Monica Langefeld...
The foot you are looking for in order to walk easily and gracefully on uneven surfaces, sand, inclined planes and cobblestones is the RENEGADE FOOT from FREEDOM INNOVATIONS.
That is what I use and have for the past three years,
I have yet to take it back to be refurbished or adjusted by my Cerified Prosthetist Wayne Koniuk of San Francisco Prosthetics who recommended it to me.
Welcome to my world free of pain and not walking like a duck!
Dan Sorkin...Chief Stump <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, July 03, 2009 at 17:49:50 (GMT)
Dang!
I need some of your magic or at least your insight and knowledge.
Congenital deformity of right leg from knee down, generally termed as a type of club foot...operated on 6 times to make it "socially and cosmetically" acceptable, walked like a waddling duck due to 3 inch length discrepancy, yada, yada, yada...
31 years later took a wrong step off a curb and heard a pop.... that was April...the leg came off 4 days ago and I feel guilty feeling so happy about it.
I don't know where to look for support, feet or anything! Can you advise please?
I want to walk, on the grass, on the beach, I want to finally touch the ocean!
Monica Langefeld <mlangefeld@cox.net>
USA - Friday, July 03, 2009 at 17:42:08 (GMT)
We just opened our new online store a few short weeks ago and attended our first Amputee Coalition of America conference held this past June.
Let me introduce myself. My name is Ted Nachbar and my company's name is Direct Amputee Supply, LLC.
Being involved with the wholesale distribution of prosthetic supplies to amputee’s practitioners for nearly fourteen years, I decided it was time to bring some of those items directly to the amputee at a more reasonable cost.
My field of expertise includes an item that I had patented for use in prosthetics along with the ability to provide service and technical support on many items including hydraulic knees, manual knees, prosthetic pin locking systems, and many materials used in the building of prosthetic limbs.
I recently joined the Amputee Coalition of America, a national organization that provides much needed peer support for amputees as well as litigation for amputee rights.
My new ecommerce website, www.directamputeesupply.com had our Grand Opening there and we were able to showcase some of our items to the patrons.
Our on-line store consists of carefully selected items that the amputee can easily order and replace on their own without having to go through their practitioner.
The store's main focus of operation is to save the amputee valuable time and money while supporting their needs with replaceable products such as socks, deodorants, skin care products and comfort aids. We plan on expanding our product line and with your help, we'll know what you are looking for.
Until next time, check out the website and let us know what you think!
directamputeesupply.com
Ted Nachbar <ted@directamputeesupply.com >
USA - Wednesday, July 01, 2009 at 03:10:07 (GMT)
I am a recent foot amputee and am having a very difficult time with it. I would like to be around people who understand the feelings i'm having and be a support for them as I hope they can be for me.
Thank you!
Carol Montag <cdmlaff@yahoo.com >
USA - Wednesday, July 01, 2009 at 02:59:34 (GMT)
Greetings Candace & Mary Martin:
I don't know anything about all the life challenges and complications which your amputation has caused, but only wish to offer some encouragement based on my own experience.
I was over 40, single (never married), running my own professional photography business by myself (sole means of support), living alone and with no family members within thousands of miles, when a driver who ran a stop light caused an accident necessitating the amputation of my right foot a few days later.
I was in 3 hospitals (sequentially) for 9 days. A half week after I came home, I did a portrait of a client in my studio standing on my one remaining foot and supported by Lofstran(spelling?) crutches. While in my hospital bed, I also negotiated a photographic contract (executed by two photographers I hired over the phone for the job) using the free phone they gave me to use in the hospital. The income from that contract paid my next month's studio rent.
The amputation caused all sorts of complications in my active and independent life. However, as soon as possible (when my leg finally healed enough), I went to a prosthetist and was filled for a new below-the-knee leg and foot.
Now (it's been over 10 years since my accident) I not only walk, but dance and hike and ski (with a knee brace)...And, when I walk, most folks have no idea whatsoever that I am an amputee.
Although at the moment you may have lots of obstacles to overcome due to your amputation, you are still alive and have a choice as to whether you see your glass as half empty or half full: i.e., you can focus on your loss, or on what you still have left.
I truly hope you shall find ways to "start living again"....Keep in mind that your attitude will play a huge role in your future!
As my Latin teacher brother reminds me in his emails, "CARPE DIEM"!!! (i.e., as the Romans said hundreds of years ago, "seize the day!")
Best regards
M. Christine Torrington <christine@sfphotopro.com>
San Francisco, CA USA - Sunday, June 28, 2009 at 18:56:53 (GMT)
I'm a 52 year-old female and recent amputee (Right leg aka) looking for a support group.
I guess I'm handling this all right except for the almost every day little crying jag I have for one reason or other.
Sometmes because I feel like my life has totally changed and I'll never be able to do the things I used to do - I can't even keep my house clean.
Sometimes because I don't know what to expect and it scares me.
Anyway, here's my info:
Mary Martin <mebdm1956@yahoo.com>
Whiteside, TN USA - Sunday, June 28, 2009 at 18:50:09 (GMT)
Dear Jason Koger,
You are an inspiration.
http://www.youtube.com/watch?v=vF7aqvtVhj4
So is your wife. Your family & the world are fortunate to have you & your story of courageous optimism.
You are my role model!
Sincerely
Dan Sorkin
www.stumps.org
Chief Stump
Fight organized crime.
Don't re-elect anyone.
…anon.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Saturday, June 27, 2009 at 21:12:37 (GMT)
My name is Candace Blanton
I had a below the knee amputation on my right leg on March 13.
I am not handling it well.
I don't know where or how to start living again.
I have not started physical therapy so I am bedridden. I am scheduled to be "evaluated" on June 30.
Could someone contact me to give me advice?
Thank you!
Candace Blanton <caelfosbl@aol.com>
USA - Wednesday, June 24, 2009 at 12:47:21 (GMT)
I was born missing my right arm just below the elbow.
Growing up as a child I wore a standard hook, but once got highly involved in sports I quit wearing it.
I have participated in every sport that I have wanted to without really having to modify anything. Now I am really interested in riding dirt bikes. I know they make the "recklus" auto shifter for bikes, but I am sharing a bike with my partner and can't make any major modifications.
I have been looking for a prosthetic to help with throttle and holding on issues.
Does anyone have any websites or ideas for me? Anything will help.
Thank you!
Tammi Mahon <Boardchik@aol.com>
Carmichael, California USA - Monday, June 15, 2009 at 01:30:26 (GMT)
I was in a car accident in February.
They say I am a miracle.
I could use a support system.
I am new (lol) at this and sometimes I feel the brave face I put on and other days I don't.
I am a through knee (left) amputee (still weird to describe myself that way). Many rods, plates, other broken spots and three time brought back from dead. My amputation was done to save me.
The phantom pain and sensitivity is the worst.
I do o.k. mentally I think. I do bury it, I have no one to talk to.
Currently residing in Wichita Ks. with my sister and her family. Went from accident in Mt to my mom's in Id to Ks. Hopefully I can get the help I need and get a leg.
Thank you.
Kelly Danielson <nae_danielson@yahoo.com>
Wichita, Kansas USA - Tuesday, June 09, 2009 at 12:45:41 (GMT)
Amanda Claridge in Salem, Oregon...
Thank you for sharing your story with us.
That sense of humor will get you over the rough spots. It always worked well for me after my amputation in 1968.
You say you can only walk a few steps in your prosthesis.
The problem is easily fixed by a COMPETANT Certified Prosthetist.
The problem you describe comes from an ill fitting prosthetic socket. It should fit like a comfortable old shoe.
Also...
The angle of the prosthetic foot and the length of the prosthetic leg itself has to match perfectly with your "good" leg. If it doesn't, back pain and stump abrasions will appear.
You have to be aggressive in demanding a perfectly fitting prosthetic device.
Until I found C.P. Bob Putzi & Wayne Koniuk of San Francisco Prosthetics in San Francisco I had the same problems you are experiencing today. They created a perfectly fitting socket, attached the foot at a proper angle and adjusted the length of the prosthetic leg until I was comfortable walking.
Today I rarely think about walking with pain...I DON'T HAVE ANY!
Go back to your prosthetist and have him make the proper adjustments for you.
Good luck Amanda!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, June 07, 2009 at 13:29:31 (GMT)
I am a 28 year old right AKA.
I was diagnosed with cancer in my right knee and thigh in November 2008. After chemo and radiation treatments, I had knee replacement surgery March 5th 2009. They had to do some blood vessel grafting because the tumor had wrapped itself around all the good ones.
In the recovery room, I lost feeling in my toes and went back in for surgery to try and save my leg. After a seven hour surgery, the decision was made to amputate.
I have taken everything pretty well considering the rollercoaster ride it has been, and somehow still have a sense of humor, joking with the docs and nurses and naming my tumor after Steve McQueen.
I have my first prosthetic and have now returned to work, but I am depressed and despairing that I will ever walk more than a few steps. I know there is a light at the end of the tunnel, but right now I can't envision myself getting there, and I have a lot of impatience. I have a great support network through family, friends and coworkers, but there are things that get to me that only an amputee will understand.
I'd like to talk with someone who had had a similar experience, but any contact is welcome really.
I have a blog at ironrose1980.livejournal.com and I can be reached at ironrose1980@yahoo.com.
Thanks!
Amanda Claridge <ironrose1980@yahoo.com>
Salem, Oregon USA - Sunday, June 07, 2009 at 13:12:37 (GMT)
Hi, my name is Nicki...
I'm having a slight issue. I'm a partial foot amputee and I seem to be having a bit of trouble finding someone to replace the part of my foot that I'm missing.
I've tried going to a few prosthetic companies and they seem to want to make me something that isn't going to be functional for me. I don't want a device the goes up my leg and straps on.
I have good motion in the rest of my remaining foot. I've done a little research online and have seen others like me with the exact same amputation. I've seen where you can get the silicone or something made that resembles a foot.
I currently reside in the State of Georgia. I'm starting to become discouraged. Right now I'm currently wearing a walking boot. I want to get out of this boot because my foot is completely healed.
Is there anyone that can point me in the right direction?
Do, I need to travel outside my area? Meaning to another state?
HELP! It's okay to email me.
Nicki Darling <nickidarling@att.net >
Alpharetta, Georgia USA - Thursday, June 04, 2009 at 16:41:27 (GMT)
Hi I am a 4th year medical student at the University of Manchester in the UK.
I am about to produce an educational DVD for people who are about to have an above or below knee amputation.
In the past all such videos and leaflets have been designed by doctors on assumptions of what people are most worried about.
I am first finding out the specific worries that people have and then designing the video/leaflet with the patient ideas.
If anyone has the time or enthusiasm to help me please get in touch either on here or at
ben.darwent@student.manchester.ac.uk.
It doesn't matter if you awaiting an amputation or have had one in the past or are just simply knowledgable; any help would be greatly appreciated.
Thanks
Ben Darwent <Ben.Darwent@student.manchester.ac.uk>
Manchester, England - Wednesday, June 03, 2009 at 17:15:12 (GMT)
Dana Anderson in Florence, NC...
Before opting out for the Dirt Nap I have several suggestions.
1) Find a Certified Prosthetist who can properly fit your stump to its socket. It sounds as if the C.P. Prosthetist you have today is an incompetant MORON. There is no reason why the socket cannot be made to so perfectly fit that you feel better wearing it than not.
2) Type the words MIRROR THERAPY into the GOOGLE search engine & use it once you find it. It is simply a mirror in a cardboard box. You will be amazed at how quickly your Phantom Pain either disappears completely or is significantly reduced after using this remarkable CHEAP device.
These two simple steps (pardon the pun) will make life worth living again.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, June 01, 2009 at 20:03:29 (GMT)
I was pleased to find this publication and to see that perhaps I am not quite as alone as I have felt since losing my left leg below the knee to a surgical site staph infection.
I ruptured my Achilles tendon in January 2006 and after two years of fighting this infection it was decided that amputation was the best option for getting me back to a somewhat normal life. I had lost the tendon to the infection as well as having significant nerve damage, leaving my foot almost completely without sensation other than the phantom pain that had already begun. The pain was and remains completely indescribable, which makes this website all the more important since so many others here know of what I speak.
My life now is anything but normal. I live alone now after my wife decided it was more than she could deal with.
I have had my prosthesis for just over a year now and I still cannot wear it for more than three hours. After a couple of days of using it it takes a few days completely off it for the pain to subside a bit.
My stump reaches literally two inches below the knee, giving me little leverage in trying to bend the knee.
The doctors at pain management recommend that I seek out another surgeon to take off my knee.
I have always been an active person, earning a good living with my hands as an electrician. I have also been a drummer in local bands for the past thirty years before this change.
Since this all began I have gained fifty pounds, further adding to the pressure and pain in the leg. Facing alienation, an uncertain future, and constant pain I can't help but dwell on a final option on a daily basis.
It is nice to read of all those that have faced this with more courage and optomism than I apparently have, living life with the vigor and opportunity that I used to enjoy.
I just can't see there from here.
Thanks again for the website and the chance to vent my frustrations. I just wanted to document my plight in the event I don't survive this ordeal.
Dana Anderson <blogwiser@gmail.com>
Florence, NC USA - Monday, June 01, 2009 at 19:52:41 (GMT)
Hi! I am a new RBKN amputee.
I have a super narrow foot 81/2 AAAA. My prosthetic foot had to be shaved down on both sides which included "shaving off the last toe, part of the 3rd toe and the great toe.
The foot still does not fit most of my shoes.
Does anyone have a suggestion for a better fitting foot apparatus?
Thanks!
Danette Schader <danetteschader@gmail.com>
USA - Friday, May 29, 2009 at 00:03:01 (GMT)
I am Cherryl Abello and my mom is a bilateral above-the-knee amputee. We are from the Philippines.
My mom and dad had a motorcycle accident July 20, 2008. My dad had multiple fractures and suffered a minor head injury. My mom on the other hand broke her right limbs in 5 places. She broke her scapula and she lost both of her legs coz her legs were literally crushed by the car (a taxi) that hit my parents.
The doctors weren't able to put the legs back together because it was just hopeless.
My dad retired from his work about 6 yrs ago and my mom, who was the highest-ranking nurse at a big hospital here in the Philippines was forced to leave her job.
The owner of the taxi company that hit my mom and dad refused to buy her prosthetic legs because they said that the purchasing of the prosthetic legs is not their responsibility anymore because they already settled the hospital bills.
Money is really a challenge for us now. I would like to know if you know any organization that will sponsor a pair of prosthetic legs?
Have a good day,
Chen-chen ^_^
Cherryl Abello <cherryllyne@gmail.com>
Philippines - Wednesday, May 27, 2009 at 03:18:15 (GMT)
Hi. My name is Peggy...
I am a below knee amputee for 5 years. I've also been a Mommy for 3 years.
I learned quickly that there are very few resources for amputee women going through a pregnancy and dealing with an infant, and now a toddler.
I've started writing a blog about my experiences, and I thought that it might be helpful for other amputees. It also sheds the comical aspect on what can happen in situations when you are an amputee.
www.amputeemommy.blogspot.com
Thanks.
peggy chenoweth <eyegalster@gmail.com>
USA - Saturday, May 23, 2009 at 13:24:06 (GMT)
Hi Dan!
I am a new amputee (RBKA) and in the prosthesis training segment of my new journey.
Please add my name and information for your web site.
Thanks!
Danette Schader <danetteschader@gmail.com>
Helena, Alabama USA - Thursday, May 21, 2009 at 22:53:54 (GMT)
Hi ... My Name is Jennifer!
I have a lisfranc injury and I am considering having my leg amputated due to my foot injury. I feel like my life is falling apart because I am running out of answers. I am in constant pain and can barely walk.
Please anyone with any information that would like to chat, Email me at Jennifer.Cole@selu.edu.
Thank you
Jennifer Cole <w0224689@imap.selu.edu >
USA - Thursday, May 21, 2009 at 02:45:54 (GMT)
Corey...
Good luck with the amputation and your T-shirt business.
By all means link wwww.stumps.org to your web site.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, May 20, 2009 at 17:26:34 (GMT)
Hello this is Corey again...
I just wanted to give you an update. A really big Physical Therapy clinic is donating their time to help me get in shape. At first they were focused on trying to make my ankle and foot work. They quickly found out that this was just not going to happen.
My next appointment my PT had the owner of the clinic come and talk to me. He let me know that in his best opinion amputation would be the only way I would ever be able to walk.
They are now helping me get my knee and hip in shape and ready for a prosthesis. That way I will heal faster and walk sooner. They were really my last hope of saving this leg. So, on Thursday I have a Doctors appointment to talk about and maybe set a date for the amputation.
I was having some trouble handling this until I started trying to think of the fun side. I have been making t-shirts for my self and family of all kinds of things for a long time.
Two weeks ago I heard a saying that made me laugh. It was " the lesser of two evils".
I thought about me with a stump and thought "my other leg must be more evil". So, I designed a t-shirt based on that. Then I started having all kinds of idea's! I told one of my friends and supporters who is an amputee and he said I should make them available to everyone. That they were good!
I looked on line and found a place to do that. Its at:
www.zazzle.com/coreycola*
10% of every shirt goes to the Barr Foundation to help in this time of need! I don't know what i would do if it wasn't for the help of others.
The other 5% goes to me to save up so that when I go to the hospitals visiting I can bring t-shirts to give out. Unfortunatly, I have to pay full price on the shirts too. But at least they are out there. They are for the person with a sense of humor. They are all rated G. Nothing nasty. I had a request for a nasty one already. I refused to make it even tho it cost me a sale.
Anywho, I just want to thank you for your help and sharing your story with me.
I would also like to ask if it is ok to put a link to your site on my store?
Thanks again,
Corey
www.zazzle.com/coreycola*
Helen Colagrossi <gunnertcm6@yahoo.com>
USA - Wednesday, May 20, 2009 at 17:22:14 (GMT)
Srdjan or Sergio from Croatia...
It was 41 years ago that I elected to amputate a badly mangled left leg as a result of a motorcycle accident.
My fault. I was speeding and lost control.
I never regretted the decision to amputate.
Immediately after surgery I was up and walking with the aid of crutches for several weeks. Then I used a cane for several weeks until my balance was restored to walk unaided.
I experienced phantom pain (the brain does not accept the fact that the limb is gone and gives feeling to a limb that is no longer there).
That phantom feeling is necessary because it tells you where to place your foot on the pavement without looking down.
It takes about a year for the stump to stop shrinking so you will need to keep adding stump socks to make the prosthetic socket fit properly.
Physical therapy after the amputation is important to achieve new balance and retrain your muscles.
After 8 months to a year you will need a new socket made for your prosthesis. The new socket will no longer need all of those stump socks you had to add to accomodate the shrinking residual limb.
Today I drive, fly an airplane, dance (poorly) and walk "normally".
You will too!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Saturday, May 09, 2009 at 14:14:01 (GMT)
hello,
i'm srdjan or sergio from croatia -
last two years i'm suffering from badly broken right leg. my bones can't heal well and surgeon recomanded amputation.
i'm very upset about my condition and i'd like to talk with someone who is amputee.
i found your webpage while i was searching about informations and noticed that you had elective amputation surgery many years ago.
i'm 30 now and don't want to spend my life on crutches. in last two years i didn't stand on two legs without crutches. i'm tired from limb saving sureries and want to walk again.
i have never meet an amputee and i'm not sure what to expect from surgery. i'd like to talk with you if it's not problem.
many thanks for reading this.
best regards
i'm srdjan or sergio from croatia <srdjan.krajisnik@gmail.com>
Croatia - Saturday, May 09, 2009 at 13:54:43 (GMT)
Branch Hunsaker in Dallas, Texas...
Thank you & Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, May 01, 2009 at 02:36:33 (GMT)
Hello...
I just recently came across your web site. Though I am handicapped, I am not an amputee. I am however finishing school at UT Southwestern (in Dallas, Tx) prosthetics and orthotics program.
I was looking for a support-group type website for an assignment, and I came across your site.
I think it is a great forum. I will definitley be directing my future patients to seek advice from you all.
Good luck, and thanks a ton!
Branch Hunsaker <branchhunsaker@yahoo.com>
Dallas, Texas USA - Friday, May 01, 2009 at 02:34:13 (GMT)
Corey C. in Kathleen, Geargia...
I had the same decision to make in 1968 after my motorcycle accident. My left leg was crushed and broken in many places. I also crushed two vertibra and broke several ribs.
I was in the hospital for several months before I realized that the doctors were experimenting to see if they could save my left leg after the other injuries healed.
Presented with the same information you got I elected to have my left leg amputated below the knee.
I have never regretted the decision because it permitted me to walk again naturally ending any future surgeries.
If I had known about the ERTL Surgical Procedure in 1968 I would have elected to have that done because it almost guarantees no post operative pain. The procedure builds a bridge preventing the wishbone effect in the residual stump as opposed to other amputation procedures.
You should be able to walk almost immediately after the ERTL Procedure with crutches.
An amputation is as safe or hazardous as any surgery. No more...no less.
After amputation surgery I was in the hospital for one week.
Have the amputation and get on with your life.
After amputation surgery I earned an FAA Aircraft Instrument Flight Instructor certificate (I currently teach at Buchanan Field in Concord, CA), I dance...poorly, walk fast and do everything I used to do before the amputation.
Do it and good luck with your ERTL Procedure!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, April 27, 2009 at 00:28:18 (GMT)
Subject: To Keep or Not To Keep That Is The Question!
Hello...
I was in a motorcycle accident on September 6 2008. The bike is fine. I took all the impact on my right leg.
I broke my Tibia and am now missing a 1 1/2" section but have a bone graft that is not taking very well. I also broke my fibula in two places.
They cannot repair it.
I have two rods in my lower leg and lots of screws. I lost most of the muscle on the inside and front side of my leg. They took my lat. muscle from my back to do a muscle flap. It measures, 11" x 6".
The skin graft came from my left thigh. My hip broke in five places and they "fixed" it with 23 screws.
My hip feels better the more I use it.
My knee has some discomfort but they say that will get better in time. They went through my knee to put the rods in and to get the bone graft from my femur. My ankle is fused in a drop foot position from being in a splint for so long. My toes are also fused and can only move about 1/4".
I have lots of nerve damage that pains me very much every day. Mostly at night as I try to stay busy during the day. I have been working hard to get this ankle to move with no luck. The more I work on my toes the worse the pain is.
The OS says I will have more surgeries to keep this leg. Or I can have one surgery and be done with this.
What a thing to have on your head.
I have read all about the Ertl procedure and talked with some amputees. I have been trying to find people who have had damage this bad and kept their leg and are able to walk fine. Every time I ask I get introduced to an amputee.
I guess my questions are:
How long after the Ertl would I be able to walk?
How dangerous is an amputation? As far a death goes?
How long in the hospital?
I don't know, maybe just any advice or help you can share with me.
This is the hardest decision I have ever been faced with. I just don't know what to do at all.
Thank you very much for your help and for this site!
I have a Wife and four wonderful kids!
Corey C. <gunnertcm6@yahoo.com>
Kathleen, Georgia USA - Sunday, April 26, 2009 at 23:55:07 (GMT)
Margaret Rajnic...
The opening line in your dating resume should be, "I am an Above the knee (or below the knee or upper extremity amputee...which ever you are" followed by, "I love camping, sky diving..." or whatever your interests are.
I found as an amputee, being open & unashamed of the fact that I am an amputee breaks the ice and separates the wheat from the chaff.
Those men who would be put off because of your "disability" are not worth your time anyway. It is good to know who they are early on.
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, April 24, 2009 at 15:07:20 (GMT)
Hello...
I need some assistance in discussing the subject of my being an amputee with men.
I am a single female (no its not my profile for a dating site) and need some advice from men and women on how they tell somebody that, "I am an amputee".
I am on a dating web site and have several persons to meet and I need advice.
Thanks
Margaret Rajnic <zlataraj@gmail>
USA - Friday, April 24, 2009 at 14:57:23 (GMT)
Dear Sammy,
We do have something in common.
After my motorcycle accident I had the same choice as your husband and never regretted it. I voluntarily had my left leg amputated below the knee soon after to prevent the doctors from experimenting.
I wanted to get on with my life.
I found that it was normal for the stump to rapidly shrink for the first year. To compensate for the normal shrinkage your husband should be using more & more Stump socks to compensate for the increased space.
It does stop after about one year unless there is significant weight loss or gain AFTER the year.
Bacterial infections occur if the stump socks are not changed daily. Because of the heat & moisture in the prosthetic socket, bacterial bugs thrive...they love it.
Also...
If the prosthetic socket is not a perfect fit abrasions will occur encouraging bacterial infections.Your husband's Certified Prosthetist should be making constant adjustments to insure that the socket is not rubbing a specific spot raw.
There is light at the end of the tunnel. I had my B/K amputation in 1968. Today I remain an active FAA Certified Instrument Aircraft Instructor. I teach, walk, dance normally because I have a perfectly fitted Prosthetic Device. The foot I use is the RENEGADE from Freedom Innovation. I use this foot because it permits me to walk normally on all kinds of surfaces including sand, cobblestones and inclined planes.
The very best of luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Saturday, April 18, 2009 at 15:31:06 (GMT)
Hi
It seems that we have something in commom.
My husband had a motorcycle accident March 08. After
3 months in the hospital, rehab and home visiting nurse he developed an infection and had to have a below the knee amputation.
The doctors wanted to experiment some more but my husband had enough and discharged himself from that hospital and found a doctor that was recommended to us to do the amputation.
He was relieved to have it done and be rid of the pain he had been going through for 31/2 months. He had 8 surgeries in 2 months.
It has been very hard on our family. We have three children. He has not been able to
work for a year now and I don't know if he will be able to return.
He has been fitted for a prosthesis. It has not been
successful yet. He is continually shrinking rapidily and had to be refitted.
At present he has a bacterial infection and we are getting medical attention so that he can heal and try again. He has been in good spirits about his amputation and
has never felt sorry for himself.
I think that I have been the one that has been missing the limb more than he has.
It has been an emotional rollercoaster for me and the children, we have three, and of course for him. He has been strong through the whole thing.
I am writing because I think that he needs some kind of support group to answer some of these
questions.
Is he ever going to adjust to the prosthesis?
Will he always have infections?
How long will it take for him to adjust to the new prosthesis?
I am his wife and I will have been there for him 110% and always will, but I think I need some support too! I have been feeling a little depressed about the whole thing because everytime it feels like we are going forward we take one step back and I know it gets to him to.
He does not mind me writing to you. My husband and I
are in this together and we both need support.
Please e-mail us.
Sincerely
sammy ballz <ballz961@hotmail.com>
USA - Saturday, April 18, 2009 at 14:53:50 (GMT)
I have a friend who lost his right hand in a farming accident some years ago. His stump is to where his wrist was.
He has never complained and has adjusted incredibly to using his stump just like a working hand on the farm. He does not wear a prosthesis.
A couple of months ago both his parents were killed on the farm in a tragic accident and he is now running it on his own (currently with loving help and support from our small rural farming community).
My husband has been helping him on the farm and has identified that he is in the mid stages of carpel tunnel syndrome in his left hand/arm - which is of great concern.
He is also experiencing pain and discomfort on the end of his stump and the underside of his forearm from having to do so much more with his stump than he used to.
My husband was wearing protective gloves and said it was hard work on his hands.
What we need help with is finding a protective leather gauntlet or something of the like that can fit over his stump and up his forearm, cover the stump and not fall off.
Does anyone know of such an item available or anywhere to search or contact about getting one made.
Thank you so much for reading this and if anyone can help us help him - it would be appreciated beyond what words can express.
Sarah Stanaway Kemp <sarah@arty.net.nz>
New Zealand - Thursday, April 02, 2009 at 01:11:23 (GMT)
Hi Dan,
C.P. Wayne Kuniuk of San Francisco Prosthetics asked me to send you an e-mail regarding some needed components for a mission the Barr Foundation is involved in.
Bob Frank is a prosthetist from NY and has made 3 trips to Ibarra, Ecuador where he works with a prosthetist and technician in a clinic that was started by Club Rotario de Ibarra.
Since the clinic has opened, they have fitted 70 patients.
Their goals is to provide prostheses for 100 amputees this year.
They have already evaluated 50 amputees on Bob's last trip in January.
He will be returning in May and is need of the following components.
30 male and female socket adapters, 4 hole and 3 or 4 prong, with rotation and without 50 foot bolts and pyramids for "Trulife" feet.
Wayne thought you might be able to send out a request to your mailing list (or web site) to see if anyone has any old prosthesis lying around.
Thank you in advance for your help.
Eva J Hughes, Executive Director
The Barr Foundation
BR>
136 NE Olive Way
Boca Raton, FL 33432
HYPERLINK mailto: t-barr@t-barr.com
HYPERLINK http://www.oandp.com/barr
www.oandp.com/barr
561-391-7601 (Phone and Fax)
Eva J Hughes, Executive Director, The Barr Foundation <t-barr@t-barr.com>
Boca Raton, Florida USA - Wednesday, April 01, 2009 at 19:15:43 (GMT)
hi, my name is jeanette anderson. i survived an accident on december 30, 2008 that killed the most beautiful man on the planet, fritz hayden, of austin, texas.
fritz and i were riding together on his bike that afternoon to see a friend when a man driving a ford f-150 passed out at the wheel, crossed the median and hit us head-on. we were each traveling in excess of 70 mph when we crashed and fritz was thrown into the oncoming traffic lane. i spun across the road into the ditch. witnesses who saw the crash said they thought "i was a tire being blown off the truck."
i never lost consciousness at the site of the crash, but i never spoke with fritz again, either; as we were on opposite sides of the freeway, according to the accident report. fritz died that day of massive head trauma.
i endured seven surgeries in the six weeks i spent at brackenridge hospital in austin. i lost my right leg and am awaiting fitting for a prosthesis. the nurses at the trauma floor told me that "i should have died" given my massive injuries and internal bleeding. i received forty-seven pints of blood throughout my procedures to stop the internal bleeding. i am grateful for the gift of my life, but i am still in mourning.
my heart is still broken from the loss of my friend. his friends held a benefit within a week of the crash and raised a generous sum of money as well as an outpouring of support for me and my father. their love and support was transcendent and healing for both of us. fritz's family, as well, reached out to us in love and kindness. for these gifts, i am humbled and indebted.
i am seeking the contact of other crash survivors or of friends of fritz's to sustain me as i recover from this horrible event. please write.
sincerely,
jeanette
duluth, minnesota
Click here to Email
Garry Van Kirk
Bikers Accident Survivor Forum
bikeraccsurvivor@bacsuv.com
B.O.L.T.
Phoenix, Arizona
Supporting Our Right to Ride, Supporting Bikers In Their Time Of Need.
You can only protect your liberties in this world by protecting the other man freedom.
~Clarence Darrow~
Garry Van Kirk <truemensa@msn.com>
Duluth, Minnesota USA - Sunday, March 29, 2009 at 21:56:12 (GMT)
am a forty-four year old woman with an aka of my right leg.
I was riding a motorcycle with a friend in Austin, Texas in december 2008 when we were hit head on by a Ford F-150 traveling in the opposite direction.
My friend, Fritz Hayden, was killed that day; and I spent two months in the hospital recovering from my injuries and the resulting seven surgeries.
I feel very isolated in my experience and I am wondering how to talk to or meet other amputees. I am in the process of fitting for my prosthetic and am still experiencing a lot of pain and discomfort.
I am a divorced parent of two sons, and I have had to live with my father while I recuperate. Any wisdom to be shared? Any contact information?
My email address is jeanetteanderson@charter.net.
Thanks!
"utterly human, divine and awake."
--Dorriane Laux
Jeannette Anderson <jeanetteanderson@charter.net>
Duluth, MN USA - Sunday, March 29, 2009 at 21:30:26 (GMT)
I live in Maine and love to swim in the ocean. I wear a prosthesis to do this and try to use old legs so that I am not destroying my working legs. Currently, I am need a left foot around size 12 womens (10 mens).
Do you have an old left foot that you would be willing to part with? I am not picky about type, etc. or even about the size.
Thank you
Sue <smurray039@aol.com>
Maine USA - Saturday, March 28, 2009 at 02:17:04 (GMT)
Jaye Alynn BS, CPT, NTP, MNT-c...
1) I highly recommend the ERTL Procedure for your B/K amputation...The ERTL details are located elsewhere on this web site
2) There are no limitations after surgery. However you won't be able to run as fast as you did before surgery unless you have a specific carbon fiber running leg fitted.
3) Support group forums are available on the Amputee Coalition of America web site (GOOGLE it)
4) I had a B/K amputation in 1964. Today I remain an active & current Instrument Aircraft Flight Instructor.
5) the only limitations I see are those imposed on yourself.
Good Luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, March 26, 2009 at 19:28:15 (GMT)
I saw a post from you on an amputee networking site and was wondering if you could provide some help.
I'm a 45 year old female. After a lifetime trying to salvage a congenital club foot, the parts are worn out and I've scheduled a BKA this November.
Can you share with me what you've run into as 'limiting'.... .quality support forums.....
Anything you have to share is greatly appreciated.
Wellness Partner
Holistic Nutrition Therapist and Certified Personal Trainer
Apex Recreation Center
Jaye Alynn BS, CPT, NTP, MNT-c <greyvulf@comcast.net>
USA - Thursday, March 26, 2009 at 19:15:20 (GMT)
This is Steve Bogna again.
I told you about my passion to alleviate pain.
I have been progressing with my Night-Kap.
Hanger Prosthetics invited me to their Education Fair in Reno, NV, to talk about it in front their workshop. I think it was a big hit. They all pelted me with questions afterwards, (No, I wasn't pelted with eggs....) They are now testing a unit out on a patient to confirm that it truly can be a benefit for people.
My website has been put together to a decent degree. I really hope to get production underway soon. There are a few issues left, like getting the optimum sizes down for each type of amputee.
But, for the most part, it has been received well, and I have worked out most of the kinks.
www.night-kap.com (Patent Pending)
Through loads of research I was able to confirm that HEAT really does play a role in fighting pain. (Through the reduction of nociceptor activity).
It also allows for better blood flow by dilating blood vessels,which is important to the healing process, as well as long term health...
All in all, I think I'm getting somewhere, and perhaps people will soon know how good the Night-Kap is.
I've met several amputees that I wouldn't have otherwise; I like working with the different challlenges and hope it continues to be a positive journey.
I hope you're doing well. If all goes right, I'll be in Atlanta in June for the ACA convention to exhibit my invention there.
Sidewinder Solutions
Makers of the Night-Kap
Steve Bogna <stevebogna@gmail.com>
USA - Monday, February 23, 2009 at 21:31:28 (GMT)
Hello...
I am a high power lineman. I lost my right leg after 16 surgeries on the right and 3 on the left due to a fall smashing both legs.
I walked for 3 years on a flex foot with no expectations, but got around very well considering. I was able to climb 200'+ high voltage towers...so back to work I went YEA!
I heard of a new foot so I did some checking. I found out insurance probably wouldn't pay for it so I shelled out the money and got it shipped to Spokane with a lot of anticipation.
It was weird to get used to. Going up steps was great but at the top of the stairs it would hyper extend my knee (very painful and unsafe).
I was getting used to it finally BUT it wouldn't take an electrial charge so I had to send it back. That took 2 months.
It does strange things. Sometimes when on creates its own chattered movement. The foot will migrate down so the toe is pointing way forward causing more hyper extension ( oh boy goody) and now we are back to having charger issues.
I have a family that went without so I could try this foot trying to make my life better.
OUCH that hurts after getting it and finding out it's JUNK.
I feel obligated to let my fellow amps stay clear or at least buyer BEWARE. These are close to $30,000 each!
Ask me what I'd like to do with it. I can't get anything for it on eBay.
I should have known when they told me "once I put it on it's mine," NO RETURNS.
Well I get so damn frustrated with it I'd love to go back to my flex foot and THROW THIS JUNK THROUGH THEIR FRONT WINDOW or shove it where it might not be such a comfortable fit.
I haven't even had it a year!
So fellow amputees spread the word that you heard of a high power lineman in Washington state that had a Proprio foot less than a year and _____HATED_____ it.
Too bad too. I fell in love with the concept.
FOR SALE VERY SLIGHTLY USED PROPRIO FOOT
EXTREMELY CHEAP
Give me a call or drop a note.
(509) 429-7353, madmuttly@yahoo.com, sruss@pn.usbr.gov, 1015 S. Clark ave. Republic, WA. 99166
steve russ <madmuttly@yahoo.com sruss@pn.usbr.gov>
Republic, WA USA - Sunday, February 22, 2009 at 00:57:57 (GMT)
Hi fellow amputees,
I have a below knee amputation as a result of a car accident in 1985. I was the guy on the motorbike.
I have seen a post on this site stating that they are not aware of any exercise equipment for amputees.
I am writing to let you know there is specific designed equipment available.
After suffering intense pain for over 6 years as my stump grew spurs and grew outward through the bottom of my stump, I had a second amputation and faced a long hard recovery with physios that had never met amputees before in remote parts of New Zealand.
Frustrated I employed a professor of sports and exercise science at Massey University to conduct a literature review to show the needs of amputees and the guidelines to the equipment that would be required to assist their requirements.
I have developed and clinicaly tested with MidCentral Health and NZALB a machine called the "Limbar(TM)" under the company name Hydraujoint(Ltd).2002
If any amputee would like to find out more about any of my machines or when they will be available in their country please email me.
I am currently in Australia and New Zealand with interested parties looking at manufacture rights in several more countries. Including Thailand, Cambodia and Bali.
If you are a manufacturer of either prosthetic limbs or exercise equipment and interested in the manufacture and distribution rights in your country or state please also contact me via email.
Aiming to make rehabilitation and exercise machines available to all amputees that require them.
Stephen Kemp <stephenk@mobileemail.vodafone.com.au>
Australia - Saturday, February 07, 2009 at 13:41:15 (GMT)
Research On The Quality Of Life
I am a doctoral researcher in psychology at City University, London UK.
I am running a study exploring the quality of life of people with acquired or congenital limb loss and am looking for people from any country to complete a 20 minute questionnaire via the internet exploring the quality of life of people with limb loss.
In summary, the study looks at how people view their own quality of life in relation to other people, and whether they feel their quality of life has changed over time. The findings of this study will contribute not only to our understanding of how we view ourselves compared to others, but also to gain a deeper understanding of how people adapt to circumstances in their lives.
As part of the questionnaire you will be asked to provide some demographical information (e.g. age, gender), the circumstances of your limb loss, indicate whether you are living with any medical conditions, and will be asked to rate your own quality of life and make judgments about the quality of life of other people. Your participation and responses to this questionnaire will be completely anonymous and confidential.
For completing the questionnaire you will be given the opportunity to enter a prize draw with a chance to win a £20 (or equivalent) Amazon online voucher.
For more information on this questionnaire and to participate, please click on the link below, or cut and paste the link directly into your browser. You must be 18 years or over to participate.
http://www.staff.city.ac.uk/psychstudies/EW5a/
If you have any questions about the study or have any problems accessing the site, then please email me at
e.l.walsh@city.ac.uk.
Thank you
T: +44 (0)20 7040 4578
City University, School of Social Sciences, Northampton Square, London, EC1V 0HB, UK
Emma Walsh, Doctoral Researcher, Dept. of Psychology <e.l.walsh@city.ac.uk>
London, England - Monday, January 12, 2009 at 21:29:28 (GMT)
Hello,
I Am having difficulty locating other people with a Lisfranc (or Chopart) amputation.
None around here that I've been able to locate.
Do you know anyone ?
My surgery was 11/17-08.
325.829.1961
CHARLES BRIGGS <cwaynebriggs@sbcglobal.net>
USA - Sunday, January 11, 2009 at 13:33:49 (GMT)
Certified Prosthetist Wayne Koniuk of San Francisco Prosthetics says, "I have done this by having the person sit on a six inch thick square of soft pottery clay covered with some thin plastic.
The person gets in the chair and motors around for some time. High pressure ares will be displaced by body weight and movement. You have to add or subtract clay until uniform pressure is achieved.
I then use magic to turn this molded clay into a cool high tech seat cushion made from a foaming silicon.
It works every time!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, January 06, 2009 at 04:40:19 (GMT)
I am an occupational therapist writing on behalf of a client.
He has a high above knee amputation of his right leg, and he had a complete hip disarticulation on the left in early '08. While in the rehab centre, he was prescribed a high profile ROHO cushion for his power wheelchair. This initially seemed fine, but he was also on a lot of pain meds at the time.
In recent months, my client has been constantly uncomfortable while sitting up in his chair. He is in excrutiating pain a lot of the time, particularly on the left where he is actually weightbearing directly on the pelvic bones only.
He is feeling very hopeless that he will ever be comfortable again.
We have tried the Quattro ROHO as well, and had a consultation with a seating specialist who completed some pressure mapping, but nothing we have tried with this client has improved his comfort level.
I am asking for your help to connect with people who have similar amputations to find out what they are sitting on - they are truly the experts after all.
Any links you could provide us or specific contacts would be extremely helpful.
Thank you in advance for whatever assistance you are able to provide.
Sincerely,
Genny Neufeld, OT Reg., (Ont.)
Occupational Therapist
Saint Elizabeth Health Care
Genny Neufeld, OT Reg <theneufelds@rogers.com>
Ontario, Canada - Monday, January 05, 2009 at 23:31:13 (GMT)
Thanks for your post.
My partner recently became an above knee amputee. He just got his "C" Leg but it is very slow going.
We would appreciate any encouragement, advice or referrals. We need to hear from others who have gotten moving with a "C" Leg.
Thanks and bless you!
Linda <L1ndaGT@aol.com>
USA - Friday, December 05, 2008 at 00:58:31 (GMT)
My name is Tyler Hyatt. I live in Sandy, UT. I'm 26 years old. I have a prosthetic leg amputated above the knee.
When I was 4 years old I was run over by a garbage trunk.
I'm married to my beautiful wife Lindsay of 3 years and we just had our first child June 30th, 2008. His name is Bentley.
I own a Tanning Salon. We bought the business in November of 2007. It has been quite an adventure.
I'm putting myself out there to help promote the
Amp1 Basektball Tour.
If you have a prosthetic limb please contact me or Scott Odom by visiting our web site:
www.amp1basketball.net
I have some videos on YouTube. Check us out.
www.youtube.com/amp1basketball
Thank you!
Tyler Hyatt <amp1basketball@gmail.com>
Sandy, Utah USA - Tuesday, December 02, 2008 at 13:33:06 (GMT)
My Husband is a BK Amputee. He has been a BK amputee for 20 years.
He uses an Alpha Original Gel Style Sleeve for his Prosthesis.
We are trying to find the same thing online, with no luck yet. We are hoping to find it for less, since we have no insurance and they seem to cost about $800.00 each.
Can you help us find this for less?
Thanks!
Limpy's Wife
CASSANDRA HAWES <riversedgelabs@msn.com>
USA - Friday, November 21, 2008 at 16:05:51 (GMT)
I am very new as an "Amputee", and hope you can help me in some way.
I was born with a very rare, severe type of Rheumatoid Arthritis, and have had many,many operations for this complaint.
Recently, I had my foot amputated from an infection from Arthritis. It was either me or my foot, so thought best if I choose 'my foot'.
What I would like to know, is---do you hear of other folk becoming amputees from arthritis, and how they managed?
I do not have a prosthesis, as it is just early days, and my attitude towards this is very healthy, and can laugh at my self.
I also have a wonderful husband who is always there for me.
Hoping you can assist me, in some way.
Yours in Australia
Pat kohout oam <salisbury83@bigpond.com>
Australia - Thursday, November 13, 2008 at 17:49:15 (GMT)
Thank you Dan for the post and information.
I have decided that the amputation is the best thing that I can do. My doctor agrees but we are having a hard time with workers comp. approving the surgery. I am a diabetic and fell and injuried my lesfrancs two years ago. I have developed unbearable pain in the area and one doctor only wants to feed me pain medication. Most recently he advised me that he works with hospice patients and he can get control of the pain.
I informed him that im not dying and would like to get some quality back in my life, not more pain medication. But because my surgeon can not identify the exact reason for the pain they are denying the surgery.
He is of course appealing their decision as its being reviewed by a doctor who doesnt know me or care to know me. That is why I have been searching for ppl with simular situations. so that I can share these with my attorney. I can not find any information on the internet that would help in my case, most are against amputation.
Its been hard as the CRPS is only a possibilitly and not a sure thing. The sure thing is that I am tired of the way my life is headed and has been for the past two years.
Once again your website is an excellent way for amputees to get together and help each other, keep up the good work.
Thanks again for your help.
Dan Halsell <sgtyogi@sbcglobal.net>
Ione, CA USA - Tuesday, November 11, 2008 at 15:00:39 (GMT)
Dan,
Please read my story of voluntary amputation on this web site.
The amputation was more than 40 years ago. I have never regretted the decision to amputate my left leg below the knee. Today I remain an active Instrument Flight Instructor, walk normally without pain, run, dance and do EVERYTHING I used to do BEFORE the amputation.
Do it!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, November 11, 2008 at 14:57:17 (GMT)
--------------------------------------------------------------------------------
My name is Dan Halsell. I am facing amputation after two years of pain and suffering after a lisfrancs injury.
I have had stents in my left leg, and an emergency bypass after the stent was plugged after the surgery to repair the lisfranc injury.
I have been told that everything that could be done has been done, and have been told by 2 doctors that BKA is the next and only thing that can be done, or live the rest of my life on pain medications and in a chair.
I have lost all quality of life. To get to the point I am looking for amputees who have had similar problems, who eventually decided to have the amputation.
I would like if at all possible if they could email me with the end results. The insurance company turned down our first request for the amputation and if at all possible I am looking for communication with those who have positive results.
Sincerely
Dan Halsell <sgtyogi@sbcglobal.net>
USA - Sunday, November 09, 2008 at 15:33:39 (GMT)
Hi everyone.
I don't know if you remember me but I posted a comment asking for advice and support for my brother in law Shane Cahill who lost both his hands.
I just wanted to say a huge thank you to everyone who contacted me and was on hand to give myself and my family advice and support. You are such an amazing bunch of people! I can't tell you how much your stories have helped me to stay strong for my brother in law.
An update on Shane.... He is out of intensive care and will be leaving the hospital in 6 days after 65 days in UCSD and he is ready to get the Hell out of there!
He is walking well despite the burn he recieved on his hip and his stumps have healed well he is already trying to use them. Nothing will keep our Shane back. Hopefully he will get some body powered hooks in the next week or so and will begin training his muscles for the I-Limb!
Maybe one day we will be able to help someone who is going through what our family has gone through.
One thing I will say is when this all happened we cried we screamed we went mad. Why us? Why Shane? what has our family done to deserve this? We have already been through so much already. We would get mad when people would say "Things happen for a reason" and "Something good will come out of this".
You know what...that something already has!
We are so lucky to have Shane here with us alive. It has brought us so much closer as a family. We have so much love and support for each other that nothing will stand in our way! So many people have been around to support us and we are so very thankful for that.
Once again thank you. A blog was set up for Shane
www.shanedogblog.blogspot.com
Check it out!
Much Love and Thanks
Emma Cahill & The Cahill Family <emmacahill82@yahoo.com>
USA - Saturday, November 08, 2008 at 03:50:56 (GMT)
Do you have any advice about the effectiveness of Ohio Willow Wood electric vacuum pump system?
I like to hike and ride my bicycle agressively enough where I sweat during most of a four hour activity. I am also concerned about being out in the woods and having the battery lose all of its charge while it is trying to maintain a vacuum on a sweaty stump.
The Harmony system I currently use has a mechanical vacuum pump that is designed to suck the sweat out through the pump and sometimes it works when the vacuum pump isn't broken.
!
Thank you,
Ron Riter <ronriter@hotmail.com>
USA - Saturday, November 08, 2008 at 00:07:18 (GMT)
I have a son, Joel Armin-Hoiland age 22, who is facing an "elective" amputation of his lower leg.
Can you help with this, or give us some names?
Thanks
Andrea Armin <AArmin-Hoiland@co.humboldt.ca.us>
USA - Thursday, November 06, 2008 at 18:24:49 (GMT)
Do you know of any place that will accept and distribute donations of clothing tailored for arm amputees?
My husband is an attorney in San Antonio, Texas and a left-arm amputee. He has a lot of business suits and dress shirts with the left suit arm tailored for his stump that he no longer can wear. I would prefer to give them to someone that can use them.
Sincerely,
Alisa Strandmo <chemteach1@juno.com>
San Antonio, TX USA - Sunday, October 19, 2008 at 14:12:26 (GMT)
Subject: Experiences with Otto Bock e-pulse pump
Hi all,
A friend of mine was put on an Otto Bock Harmony e-pluse pump to help improve her walking (lean, slight build, 6" BK) and it certainly helped.
Unfortunately these pumps seem to be failing at an unacceptable rate.
Her first pump worked for a little over 3 weeks and then wouldn't run reliably. It would just quit operating for no reason, but would work for a bit if powered down and restarted.
That one was replaced under warranty (and an admission that there was a design flaw) and the new one has lasted all of a month before it no longer held a charge. It lasts all of 3 hours instead of the usual two days. And no, there is no leak, it cycles as infrequently as it did before (2 secs every 5 minutes).
Are others having similar issues with this pump?
I have seen posts elsewhere that suggest it's a piece of junk.
It certainly has some design flaws, like being flat, when
all prothetics are cylindrical, but is there is any point it keeping it if it's just going to keep failing until the warranty runs out?
Is there something else she should consider using?
Thanks in advance for your inputs.
Doctor Bob <imcra2@yahoo.com>
USA - Friday, October 17, 2008 at 18:41:49 (GMT)
Dear Mohammed Shamil Abdo in Addis Ababa, Ethiopia...
Your request was posted to the www.stumps.org GUESTBOOK at 1453 UCT Tuesday October 14th, 2008.
The very best of luck in securing the monies needed or the donation of a pair of used prosthetic devices.
Used prosthetic devices cannot be resold in the United States of America but they can be either sold or donated to citizens outside our borders. Perhaps someone reading this posting will have had a relative or amputee friend that has passed away and will send you the legs you need.
Good luck in your quest!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, October 14, 2008 at 15:04:37 (GMT)
Dear Sirs/Madam,
Name Mohammed Shamil Abdo
Age:46
Marital Status Married
Children four
Nationality:Ethiopia
Addis Ababa
Email Addres:mshamil2000@yahoo.com
I am living in Addis Ababa capital city of Ethiopia. With unexpected accident I have lost both my legs before twenty years and now I am in big trouble to face the challenge of life.
Once upon a time after I have lost my legs one charity organization which is found in Ethiopia provided me a man made two legs by sending me to Germany. However, because of long time service my artificial leg put out of service as a result I'm in bed.
So that, my children and I am in big crisis and I'm afraid my children's will go out to street.
Unfortunately artificial leg is not found in Ethiopia. Hence I identified that man made leg is produced in South Africa Nation with a cost of 7,000.00 - 9,000.00 dollar per leg.
When my best friend go through web site he found out your company address and fortunaltely with the help of almighty God we are in identical situation.
So that I'm begging you you to help me to the best of you.
Since you feel the very depth of the symptom I expect to give me your hand.
If you are willing to provide me the charity I will send you through my full address and picture of mine. I'm looking forward to see you soon and say thanks in advance for your cooperation.
Thank you!
Mohamed Shamil Abdo <mshamil2000@yahoo.com>
Addis Ababa, Ethiopia - Tuesday, October 14, 2008 at 14:50:58 (GMT)
I thought you might be interested in the solution we found for the student's archery.
Here's my original query:
Hi,
I am a teacher of an eighth grade boy who was born without a left hand.
His arm ends about halfway down the forearm. He has developed many compensation techniques and can do most activities, including baseball, golf, biking, and playing the baritone horn.
This year the gym class plans a unit on archery at a local sportsman's shop that will be providing equipment for the kids to use as they learn archery. The student had a prosthesis in primary school, and he hated it, and he found it easier to work without it, so he broke it.
Do you or your members have any suggestions of adaptations to enable him to do archery with no left hand?
Thank you!
Leslie or David
USA - Wednesday, August 20, 2008 at 04:14:25 (GMT)
The local sportsman's shop worked with him and found that they could attach a simple wristband to the bow. The purpose of the band was to keep the bow from falling to the ground after the shot. By holding the string, the student was able to use his stump to raise the bow and he was able to sight. When he let go of the string, the arrow flew, and the bow flopped down, hanging from the wrist strap, but did not drop to the ground.
Thank you for the ideas you gave us to look at.
Leslie or David <muddleaged@frontiernet.net>
USA - Sunday, September 28, 2008 at 21:15:26 (GMT)
Colin in South Africa...
The "C" Leg is usually available on eBay for $5000
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, September 26, 2008 at 13:30:20 (GMT)
Hi there
I am Colin from sunny south africa.
I too am a TKA (through knee amputee).
Said bon voyage to my left leg in July 2005 during a repair to trackless mining equipment.
An operator ignored his supervisors instructions and crushed me against the machine that I was working on which resulted in crushed pelvis,intestines, bladder and an open fracture to my femur which after 10 days had to be amputated due to gangrene setting in.
I was shocked at what had Just happened, as its amazing how ones body deals with trauma. No pain except for the initial crushing.
I was hospitalized and medically comatized for 3 months.
I was very negative at first, but then realised I have a beautiful loving wife, daughter and above all we have JESUS. There was a reason why this happened, but I believe that GOD does not have to do ANYTHING ( Some people argue that, God, why do you heal cancer patients, but not us amputees?)
He (GOD) educated people and gave us TECHNOLOGY, such as the C-LEG, bearing in mind that the amputation will be a reminder to Always walk the straight and narrow and focus on what's really important, such as the LORD, family and friends.
Here in South africa workers compensation is somewhat lacking as they only give you cheap prosthesis's.
A C-LEG is a definite NO-NO no matter how you try to motivate it.
I am currently purchasing one (a C-LEG) from my own, "pocket" as my employer SANDVIK mining and construction are in the process of loaning me the funds to purchase said leg.
I will have to refund them once the court case is settled.
I am forever grateful to them, they are a first class employer.
You see, it was the mines neglegence and not my employer, as the mine was the 3rd party.
Meantime I'm continuing with my life and making the best of it.
Keep well
Regards,
Colin Ginsburg <colinginsburg@gmail.com>
South Africa - Thursday, September 25, 2008 at 22:19:52 (GMT)
My invention is coming along.
It’s me again, the Sidewinder. (Steve Bogna). I just wanted to let you know that I am now expecting the prototype of my invention. I plan to make some presentations and get people familiar with the product, and get their feedback on my heated stump cover for residual limbs. I still don’t know if it will be a big hit or not.
I know the heat can alleviate a fair amount of discomfort, and I also believe by keeping the limb warm, you will reduce the frequency of the phantom pains----I am not claiming that it will affect the severity of the spasms, but I think that it can be beneficial by reducing the number of times that those spasms hurt you.
I know the humidity affects me, so does cold, and if I shiver, it almost always triggers an onset of spasms for a little bit. But If I am warm enough, I rarely get spasms.
My product is designed for the “Down time” when you are not wearing your prosthesis. Wear it to bed if necessary!
>BR>
I‘ll keep you posted, since my goal at Sidewinder Solutions is to provide amputees with the tools they need to live pain free. I think I’m onto something with this invention.
You know, I must say that it is nice to be able to converse with amputees and compare notes, etc.
I can’t believe that I just tried to go it alone all those years with out any help from others. Of course, the world didn’t have the internet in 1979, too. I knew my situation was extremely unique with my vast amount of injuries, and to me, my amputation was just a small part of my recovery process, so I was never hung-up on it. It probably didn’t help my mental outlook when my dad died a year after my wreck. My amputation never set me back; as I was looking forward to it after all those failed surgeries. I just assumed that nobody could relate to my predicament, so I never turned anywhere else for those answers. In my mind, since my dad was gone, I knew I needed to find them on my own.
I have wandered down many dark avenues in search of said answers, some just for peace of mind, some for physical benefits and pain relief. Yet, the process of trial and error is costly and time-consuming. It’s so much better to have someone tell you what will work so you can go right to it.
Your website is incredible. Keep up the good work.
Steve Bogna <steve@cbdcabinets.com>
USA - Wednesday, September 17, 2008 at 21:35:55 (GMT)
Sage Loats in Oakland, CA...
Stumps 'R Us meets monthly in a different location every month. The meeting place, time, location and cost is in the invitation always posted on page ONE of this web site.
Our September meeting (Saturday September 13th, 2008) takes place at the GAYLORD India Restaurant in Sausilito at Noon.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, September 08, 2008 at 23:27:22 (GMT)
Mr. Sorkin,
I am a counselor working with a 26 year old woman who is facing an above knee amputation due to cancer. Searching the internet looking for resources for her I came across your website and looked to see if you have regular meetings or a way for her to find a community.
Right now she feels very alone, scared, and angry. Please send any information and I will pass it on to her.
Thank you for your time.
Sincerely,
Sage Loats <sloats@haartoakland.org>
Oakland, CA USA - Monday, September 08, 2008 at 23:22:14 (GMT)
My name is Emma Cahill and my husband and I live in San Diego with my brother in law.
On Wednesday he was at work as a window cleaner and was electricuted by 12,500 volts.
Thank the lord he surived but after many surgeries they told us they are unable to save his hands and he is due to have surgery on Monday to remove them.
The internal and external damage was too much.
Shane (my brother in law) was the most active person I know. He rock climbed, BMX, moto'd 50cc well think of everything extreme and he did it!
It's such a shock to everyone. The worst part is he is in a medically induced coma and will wake up with no hands.
I have been researching prostetic hands and have come across the I-Limb. I just wondered if anyone you know through your group has been in his situation. I want to learn as much as I can to help him through this extremly hard time.
He is only 34 and we know with everyone's support he will do everything he did before but just differently.
Any advice, support or information would really help our family right now. We know we have a long recovery mentally and physically ahead of us and we all would like to prepare and have information at the ready for when Shane wakes up.
Thank you!
Emma Cahill <emmacahill82@yahoo.com>
USA - Monday, September 08, 2008 at 13:23:29 (GMT)
Dave Paschold in Lincoln, NE..
Yes I have. Molly is an Honorary Member of Stumps 'R Us. She attends very few meetings however.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, August 31, 2008 at 21:44:40 (GMT)
Have you seen this one?
It is Molly the horse amputee with working prosthesis.
Dave Paschold <dlpaschold@landolakes.com>
Lincoln, NE USA - Sunday, August 31, 2008 at 21:42:04 (GMT)
Ron Mendricks in San Francisco...
Welcome...
A Stumps 'R Us Survival package is being sent to you.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, August 31, 2008 at 21:36:53 (GMT)
New to Stumpdom.
Ronald Mendricks <rmendricks@yahoo.com>
San Francisco, CA USA - Sunday, August 31, 2008 at 01:32:04 (GMT)
Paul & Barbara In Healdsburg, CA
Wayne Koniuk, C.P. is Stumps 'R Us Official Prosthetist. Whatever advice he gave you I would wholeheartedly endorse.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, August 27, 2008 at 19:52:45 (GMT)
I’m Paul Micallef and a new left foot amputee in Healdsburg, CA.
After talking to Wayne Koniuk at S.F. Prosthetics, I got some conflicting advice about a good prosthetics outfit in Santa Rosa.
Does Stumps R.Us have any recommendations about prosthetic makers in that area?
Thanks
Paul & Barbara <paul@vintage36.net>
Healdsburg, CA USA - Wednesday, August 27, 2008 at 19:48:14 (GMT)
Maryanne Taylor...
BR>
You need to go back to your CPO. It sounds like your leg is not adjusted right. I am a bilaterial bka myself and I walk without any aids whatsoever.
If you want to...E-mail direct and I will answer all of your questions. If I can't I will send you to someone that can.
Jack Pickerd aka PEGLEG JACK
JACKSONVILLE, Texas USA - Wednesday, August 27, 2008 at 17:48:56 (GMT)
I have been an amputee for over a year. Lost the leg below the knee to diabetes. I did not get PT for six months and now I am having problems walking on my prosthesis.
I am 64 and in good health both physically and mentally. The problem is that my leg seems crooked and buckles when I walk on the walker.
I ride an exercise bike for 15 minutes a day and often twice. At PT they said I have learned all they can teach me but I still can't walk for more than a few minutes on the walker..
Any suggestions??
maryanne taylor <maryannet8@hotmail.com>
USA - Wednesday, August 27, 2008 at 02:08:13 (GMT)
Diana McBride...
Did you ever think about using just a regular towel to sit the gentleman on?
Just fold a regular size towel in half lay on the board and scoot on to the transfer board with the towel underneath his botton. This will make sliding
over the transfer board much easier. He will be able to get into the wheelchair and if it is electric with arm rests that raise it will make it alot easier.
I had tried this method after my first amputation (LBKA) in August 200., Then when I had my second amputation (RBKA) in February 2004 I just would raise the arm rest and scoot into the electric wheelchair and no problem.
You would be amazed at how strong your arms will get lifting your own body weight.
You didn't mention why he has such a tender bottom maybe that is something you need to check into. An air cushion or foam w/gel cushion would be of help.
It has been awhile since I've been to this site so had to read all the latest messages that have been posted since January 2008.
I had written at that time that I had gotten an open wound on my right leg. I had to finally go to see a wound care nurse and then a doctor. Now I'm having to go back to the doctor as the new PA at my clinic doesn't like the look of the right stump.
I tried the vacuum system, Anthony put me into, BUT it was causing too much pressure on my knee cap. So he had to attach a strap to hold on the new socket and leg. I sure miss my pin liner.
A couple of times I've went to get out of the truck with a small step stool and I have lost the leg. Sorta funny
really as my daughter was helping me the day and I hollered "I just lost my leg". So she ran back to me and got my leg and then ran back to get the wheelchair. When all of us are out and about we have a ball.
Hey life goes on, just because you lose some limbs doesn't mean you can't still have a life. I baby sit with my two grand children with my husband help, of course. HA! HA!
Poor baby he gets to do the cooking.
Well that is my news for this visit.
Janet Lee Toomey <wjtoomey@sbcglobal.net>
Herrington, KS USA - Monday, August 25, 2008 at 02:43:25 (GMT)
Leslie or David,
The solution (TRS) for you may be at this web site recommended by Stumps 'R Us Certified Prosthetist Wayne Koniuk.
http://www.oandp.com/edge/issues/articles/NEWS_2008-07-02_02.asp?searchquery=Black+Iron
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, August 22, 2008 at 17:05:06 (GMT)
Hi,
I am a teacher of an eighth grade boy who was born without a left hand.
His arm ends about halfway down the forearm. He has developed many compensation techniques and can do most activities, including baseball, golf, biking, and playing the baritone horn.
This year the gym class plans a unit on archery at a local sportsman's shop that will be providing equipment for the kids to use as they learn archery. The student had a prosthesis in primary school, and he hated it, and he found it easier to work without it, so he broke it.
Do you or your members have any suggestions of adaptations to enable him to do archery with no left hand?
Thank you!
Leslie or David <muddleaged@frontiernet.net>
USA - Wednesday, August 20, 2008 at 04:14:25 (GMT)
Diana McBride...
Being a bilateial bka myself, I have on occasion used a transfer board. I don't like them.
Have you tried having your amputee sit on a small pillow and then slide across the board using the pillow to overcome the friction?
Make sure the board is really stable and will not tilt in either direction or it will give the person the feeling that he is falling off.
You may need a wider board, where the person can grip the board on both sides to stablize himself.
I can't remmember where I read it but there are Federal programs that will buy and build a van where the drivers seat is taken out and replaced with a locking wheelchair in the driver's position.
I hope this helps.
Jack pickerd, aka PEGLEG JACK <sparksjwp60@suddenlink.net>
Jacksonville, Texas USA - Monday, July 28, 2008 at 19:39:21 (GMT)
Diana McBride somewhere in the USA...
As far as I know you are doing all you can with the transfer board.
Perhaps someone reading the GUESTBOOK has a better idea.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, July 25, 2008 at 20:47:07 (GMT)
I am a physical therapist and am working with patients with amputations.
I have one patient currently who has bilateral transtibial amputations, both within 2 months. He can not yet be fitted for prosthesis.
We are having some trouble with transfers.
Text books often recommend slide board transfer but he has a tender back end and the slide board is not comfortable.
Any suggestions on how to transfer while keeping him from sliding forward onto the floor?
Thanks so much
Dianne McBride <dm72003@hotmail.com>
USA - Friday, July 25, 2008 at 20:44:18 (GMT)
Peter Klauer...
1) The pain at the tip may decrease with time as your stump gets used to the pressure of Physical Therapy.
2) You may be allergic to the GEL Liner. Try a different liner.
3) Use Self Hypnosis before PT
Dan Sorkin <DanSorkin@comcast.net>
San Francisco, CA USA - Thursday, July 17, 2008 at 11:05:06 (GMT)
I read your advice to James Buckley with interest and have a question.
I am an AKA as of March of this year. I am in a C-Leg and working with a good PT and prosthetist. I
think.
I am in the early days still but after an hour long PT session learning how to use my new leg, the end of my stump hurts too much for me to put my full weight into the socket.
My prosthetist has worked hard and made multiple modifications and now no part of the socket touches the part of my stump that hurts, so I guess that it is just pressure from the gel liner.
There is no outward evidence of soreness and the MD finds nothing wrong with the stump.
I have been told that the stump will get used to the process and the pain will become less and my walking time longer with time.
Does this sound right to you?
I should clarify by saying that at the begining of a PT session there is no pain.
Peter Klauer <peterklauer@gmail.com>
USA - Thursday, July 17, 2008 at 10:58:43 (GMT)
James Buckley in Saginaw County, Michigan...
Please have your Certified Prosthetist fit you with a NON-PIN insert. The Pin at the tip is causing discomfort you do not need
In addition you can also reduce the tip pressure by inserting a Dr. Scholl's Lambs Wool piece at the bottom of the socket to cushion your sensitive stump tip. Any Drug Store will carry this inexpensive product.
You shouldn't have to, "Get Used To Any Pain Or Missfit".
It is the job of the Certified Prosthetist to fit your socket perfectly so there is no discomfort whatsoever.
Adjustments have to be made from time to time if the stump changes shape because of weight gain or loss but even that should not interfere with your comfort.
If your Certified Prosthetist balks at changing from the Pin device to another more comfortable system you probably have a moron for a Prosthetist.
If that is the case find another Certified Prosthetist and Physical Therapist!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, July 15, 2008 at 19:52:20 (GMT)
Subject: New B/KA
Accident date:4-22-08
Prosthetic start date: 7-10-08
I am set up with a pin and lock system.
From the first day using the prosthetic, I have been dealing with pain on the bottom of my limb. After the second day of PT, I notice bruising on the bottom. For the most part I can get up and move for a short period of time with some discomfort. If I rest, then begin to move again the pain intensifies.
PT and Prosthetist are trying to figure out the correct size needed.
My question is: Do I keep working through the pain? Is the bruising a sign to slow down?
James Buckley <obuacalla@hotmail.com>
Saginaw County, Michigan USA - Tuesday, July 15, 2008 at 19:39:17 (GMT)
Just a note to say Thank You, to Jennifer and Pam for the amazing gift they have given to me.
I had no idea 'till reading their recent posts to the GUESTBOOK that I had left such an impression on either one of them. I was so overwhelmed by their letters because just by living with and accepting my disability, unbeknownst to me, I was able give them inspiration when they needed it.
As people with life changing disabilities, what we all can learn from this is that when you’re asking yourself “why” and “what is the purpose of my life now” the answer is truly right in front of us.
Angela Briguglio <angela@goldstonelaw.com>
CA USA - Friday, July 11, 2008 at 19:56:41 (GMT)
I had terrible lightning bolt like shooting phantom pain that did not allow me to sleep. Each night was worse than the previous night. I was at my wits end. Nothing seemed to work until I went to an Acupunturist here in the Los Angeles Basin.
Specifically in the Newhall, Saugus, Valencia area of North Los Angeles, (Now called Santa Clarita or The Santa Clarita Valley, CA)
I met a very intelligent and resourceful acupuncturist. I was lucky!
Her name is A. Young Kim, (661) 251-5390 Address: 18261 Soledad Canyon Road, Santa Clarita, CA 91387
She does accept most insurance plans. She asked me numerous questions before doing any procedures. She has a Bachelor's degree from Korea, and a Masters and Doctorate that she obtained here in the states.
Results were nothing short of amazing.
The first 90 minute session of acupuncture really turned me around.
Beforehand, she asked me lots of interesting questions like, "Are you a fast eater?" or "When you are cold, are your feet colder than the rest of you?" The questions gave her a better understanding of my problems and their causes.
Afterwards, she also gave me a sample of some powdered herbs to mix with water a couple times a day.
I have to admit that my spasms were reduced to nothing! It was like a light switch being turned off. It's a major relief to be let go of that burden, as I'm sure you know.
I hope she can continue to show me other ways to manage my pain episodes.
Just wanted to let you know that I'm feeling better. I look forward to every day now.
Steve Bogna <tbogna001@socal.rr.com>
Los Angeles, CA USA - Sunday, July 06, 2008 at 13:47:27 (GMT)
My name is Garland Creasey ( left above elbow amp).
I am not writing for myself but for a young lady I just met. She is remarkable. I would appreciate any thing anyone can do for her.
She had quadruple amputations and smiles when she talks to you. Her web site is:
http://www.loveoflindsay.com/
A kind word or two from others will let her know she is not alone in her world...
Thank you!
Garland Creasey <GCREAS@aol.com>
Richmond, VA USA - Saturday, July 05, 2008 at 21:29:55 (GMT)
Hello June Valentine,
Such a tragic incident to have happened on Fathers day! May God give you all enough strength to deal with this.
I am 50 years old now and had an accident and an above-knee amputation of my right leg three years ago while traveling in India. It has been a tough ride but for some providential reason, we all seem to get the strength to deal with what is served to us.
I am back into my job, doing all of the needed activities independently.
First few days will go in a daze and one doesn't realize the impact of such misfortune. In my case, I started feeling the hit only after I got a prosthesis and began a semi-active life.
Family support is extremely valuable. In the first few years, there are lot of frustrations because the amputee expects, though not really justified, the close family members to understand every small adjustment the amputee has to make in life. This is where you have done an invaluable thing by directly becoming part of a group.
That is a great beginning.
Your large family is a great asset too. The best advice is not to rush it. As one of the members suggested, it helps a lot talking to other amputees.
Hidy will do just fine. She will be absolutely normal though we all know it is a different 'normal'.
God bless you all!
Vijay Saradhi <vjsara@gmail.com>
New Jersey USA - Saturday, July 05, 2008 at 13:29:52 (GMT)
Hi June Valentine...
My name is Pam Seifert. I am an architect in California.
In October 2003 at 53 I suffered a stroke. Then two years later I had a life-altering blood clot. That one caused me to lose my left leg below the knee.
As you might have guessed I am a member of "Stumps 'R Us".
Your daughter has a big challenge ahead of her. I look at both my health "calamities" as challenges. They've taught me so much. I have a lot more empathy than I had before. I've learned to accept help and even to ask for it when necessary, though that's still not easy.
Living with an amputation is challengeing, but manageable. I found a great prosthetist through Stumps 'R Us. I have now relearned to walk twice as an adult.(I love my physical therapists!) I am able to ride my horses and do much of their care. I can drive and work too.(
I understand that a wheelchair is not a jail , but rather, a mobility tool.)
I attend lots of support groups which are enormously helpful. Yesterday, for example, I went to an afternoon stroke support group at the hospital in Berkeley where I did my acute rehab after my stroke. Then in the evening I met some friends for dinner before we went to our brain injury group in another local city.
I don't know that any of this is helpful, but I would be very happy to talk with your daughter. I don't know what resources you'll find there for her, but it is really helpful to talk with others facing similar challenges.
After losing a limb we are still the same people. I'll share a quote I love: "You don't ever get back to where you were, You get back to where you are going". (I believe our paths are only apparent to us as we live through them and learn as we go.)
Attitude is truly key- as Dan already told you. One woman in our group - a lovely, dynamic, vibrant woman , lost both legs due to bacterial menengitis (breathed in a bad germ!). She lost both legs and a bit of her pelvis too and yet she is vibrant and happy and fun! She once told me about a fellow who was physically in tact. but depressed.He looked at her thinking how glad he was that he wasn't her. She looked at him with his bad attitude thinking how glad she was that she wasn't him.
She has a demountable wheelchair and can drive anywhere. She gets into the driver's seat, disassembles her chair and puts the pieces on the passenger seat. She's travelled cross country that way.
More and more there are wonderful activities and opportunities for those of us with disabilities. It is not easy to accept becoming disabled, but it is easier if we try to live as full a life as possible with our disabilities. It does force us to figure out for ourselves what is truly important to us.
This past week I went on a really enjoyable trip in northern California: There is a program called Access Adventure begun and headed by the great grandson of John Muir. He is a life-long horseman who has m.s. This program carries on his great grandfather's legacy by taking wheelchair accessible horse-drawn carraiges on back country trips for people with mobility challenges- Great fun!
I hope the best for Hidy and her husband and all of you. If I can help, please let me know.
Pam Seifert <PAMSEIFERT@aol.com>
June Valentine in Carney, OK
What a terrible accident to have on Father's Day!
I am sending you via Priority Mail a Stumps 'R Us Survival package to give to your daughter Hidy. In addition by separate E-mail I will Cc several female members of Stumps 'R Us to communicate with Hidy through you until she has her own Internet address. They will share their POSITIVE experience with your daughter
In order to find an Amputee Support group in Oklahoma I suggest you contact the Amputee Coalition of America at
www.amputee-coalition.org
They are a fantastic resource.
Being cheerful & positive is the best advice I can offer you.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, July 01, 2008 at 20:59:12 (GMT)
My name is June Valentine.
My daughter Hidy, her husband Mike and his parents were in a 2 car accident on Father Day June 15th, 2008 when a pick up truck pulled out in front of them. Mikes father was killed his mother is ok and Mike and Hidy are still in the hospital.
Mike had 2 broken legs (thigh bone) and multiple other injuries. He still doesn't know much.
The reason I have contacted your group is that my daughter Hidy who is 41 lost her right leg above the knee. She is still in the hospital and has just beginning therapy. She does not have the Internet but we are trying to see if we can get it for her.
They are on Social Security so do not have any money.
Medicare is covering the expense for all of this for now.
I want to be supportive and do what I need to do, but this being my first time expericence with this type of situation and do not want to do anything to hinder her in any way.
I was wondering if you or any one from the group could give me advise as to what I need to do or NOT do to help her accept what has happened and recover.
Hidy has 5 childred and 2 grandchildren. She has 1 brother and 1 sister, and lots of neices and nephews.
Any advice you can give would be greatly appreciated.
My mailing address is: PO Box 125, Carney, OK 74832
Thank you!
June Valentine <gmajvalentine@att.net>
Carney, OK USA - Tuesday, July 01, 2008 at 20:47:42 (GMT)
Hi Dan,
I'm an RHD amputee, I lost my leg to necrotizing fasciitis (flesh eating virus) almost 3 years ago now. I recovered really quickly, adapted to getting around on crutches and went back to work 3 mos. later, even interviewing and taking on a new job during that time.
A few weeks ago I travelled to las vegas by myself to meet friends and on the way home I had a little problem with my crutches, with one breaking on me in the bathroom - leaving me to the mercy of a stranger to get to the gate, and on the flight crew to get me to my seat. (Um, United...two little old 4'10" asian ladies CANNOT carry a full size person in an aisle chair....you guys are begging for a law suit).
I hobbled/hopped on my one leg and single crutch rather than risk having them drop me.
As I was seated, I looked over and realized that the woman sitting across the aisle from me was a double above knee amputee. She was fantastic, very funny and personable. I didn't get a chance to get her name, but I think she mentioned she was a member of stumps 'R Us and was located out of Santa Rosa.
I found myself thinking about her repeatedly these past few weeks wishing I'd had a chance to chat more with her.
As I got on the plane I was feeling very self-conscious and at the mercy of others, and shaken up - not because I had been injured, but because it was the first time since my amputation that I was alone and "helpless". Just seeing her sitting there made me laugh - I mean, what are the odds?
Her humor immediately put me at ease and I felt better just seeing her there.
Thinking about her made me realize how valuable the humor and humanity this organization brings to so many many people are. Thank you, although I'm not much of a support group joiner, I have checked in here from time to time for stories and resources and it's all very much appreciated.
Best Regards,
Jennifer Gil <jennifer.gil@gmail.com>
Foster City, CA USA - Monday, June 30, 2008 at 12:32:29 (GMT)
PEGGY J.
You sound like one very remarkable young lady. Hang in there and have fun while you are at it. To me it is 99% of the battle when you can laugh and have fun being an amputee.
I am a bilaterial bka and I love to joke about them.
jack pickerd aka PEGLEG JACK <sparksjwp60@suddenlink.net>
JACKSONVILLE, Texas USA - Saturday, June 21, 2008 at 15:09:33 (GMT)
Valentín Secades in San Jose, Costa Rica...
Thank you!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Saturday, June 21, 2008 at 04:06:16 (GMT)
My name is Valentin.
I´m a developer from San José, Costa Rica, and was just reading stuff on your site.
I can say it is just amazing how little I looked for support groups throughout my first year as a AK left leg amputee. I was reading through some of the posts, and I just wanted to offer my help/services in whatever way I can.
I hope you have a good day, and keep up the good work.
Best regards
--
Eng. Valentín Secades M.
Lead Developer/Trainer
Quality XP Development
Software and database development/consulting 200 N Metalco Cond. El Rosal #1 San José, Costa Rica
Office USA: (503) 616-4399
Office CR: +506 235-5304
Cell: +506 398-3425
IM: Google Talk vsecades@gmail.com
Skype vsecades
http://www.qxdev.com
Valentin Secades <vsecades@indigitalcr.com vsecades@gmail.com>
San Jose, Costa Rica - Saturday, June 21, 2008 at 04:03:57 (GMT)
Peggy J. in Defiance, Ohio...
I wish everyone I knew had your attitude.
Wit, a sense of humor and the courage to look at life's disappointments as merely a bump in the long road to self sufficiency and strength of character will present you with a rewarding and happy life.
It has worked for me and I know it will work for you.
Thank you for sharing your positive story. You are a remarkably mature young woman Peggy J.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, June 20, 2008 at 16:50:54 (GMT)
I lost my leg when I was a thirteen month old child.
My mother had set a pot of boiling water on the counter unbeknownst that I was just tall enough to reach for it. Which of course being the curious child I was, I did indeed reached for the very pot of water that ended my right leg's life as I know it.
My leg was removed just below my knee joint, thus giving me the ability to wave it at my friends.
One of those friends being Ellen, who told me about stumps-r-us in the first place. She said she was bored and googled it.
I thought it sounded cool so I googled it myself and here I am.
I'm 17 now and the only time I ever vent about how much I hate not having a leg is when I am scribbling it all down in one of my many journal/sketchbooks. So, yeah I think that's everything and I guess I just wanted to be a part of this.
Thanks!
Julie Reith (AKA Peggy J.) <stub44@gmail.com>
Defiance, Ohio USA - Friday, June 20, 2008 at 16:41:53 (GMT)
Catherine in Switzerland...
You will soon be receiving E-mail from Double Above The Knee amputee members of Stumps 'R Us.
They are all doing well and have gotten on with their lives including boy friends and marriage in some cases.
Physical therapy and a Certified Prosthetist that fits you PRECISELY will open a new, successful path to a new life.
Please keep us informed as to your progress.
You are not alone!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, June 09, 2008 at 02:43:23 (GMT)
a few weeks ago i was in a bad car accident which left me a double above knee amputee. i just had the hopefully last surgery on my right stump and soon prothstetics will be fitted.
i live in switzerland and i have not found a single support group in my country so far. that's why i want to join your group.
i'm very scared concerning the prothstetics......scared of the pain, but even more scared of leaving the house and be confronted with the looks of the people outside.
i definitely need some support right now so that i can look at the whole thing with a lil bit of humour
sorry about my long rant/whine. what do i have to do to join your group?
thanks very much!
catherine <alesias.wings@yahoo.de>
Switzerland - Monday, June 09, 2008 at 02:36:12 (GMT)
Laura in San Jose
Please consider an ERTL Procedure. The details and the Orthopedic Surgeons qualified to perform the procedure is spelled out on page one of this web site.
Several Stumps 'R Us members have had the procedure with remarkable success. I will E-mail you the names tonight.
The only prosthetist I can recommend to you is Certified Prosthetist Wayne Koniuk of San Francisco Prosthetics. He specializes in a perfectly fitting prosthetic device. He happens to be my Prosthetist as well.
Contact Wayne at:
San Francisco Prosthetics
324 Divisadero Street
San Francisco, CA
(415) 861-4146
I made the same decision you are contemplating 38 years ago. I never regretted the decision to amputate.
Dan Sorkin <DanSorkin@comcast.net>
San Francisco, CA USA - Saturday, May 31, 2008 at 02:46:56 (GMT)
I just spent some time on your wonderful website Stumps R Us. It was very encouraging.
I have survived 12 leg surgeries following being diagnosed with bone cancer in my right femur 19 years ago. The last one was done on an emergency basis to remove an artificial knee with a massive staph infection, two weeks ago.
I am contemplating resisting my surgeon's advice to have yet another reconstruction (which will inevitable lead to more surgeries later on) and instead have an amputation.
I live in San Jose,CA. Do you or any of your community have a recommendation for either a surgeon or a prosthetist in the south bay?
I would like to talk to some amputees, doctors, and prosthetists before making my decision.
Thanks so much for any information you can provide
Laura Ellingson <lellingson@scu.edu>
San Jose, CA USA - Saturday, May 31, 2008 at 02:37:26 (GMT)
I like the matter-of-fact, cheery tone of your site and hope that you or your members might be able to answer a very unusual query.
I'm helping a baby who was abandoned at birth in Vietnam and mauled by a wild animal, resulting in the loss of his genitals and right leg from the groin.
He's now 22 months old.
We are trying to secure funding but need a cost estimate. Any idea how much decent prosthetic care might run for an infant (per year), and how many limbs/fittings he'd require until grown?
For more details, please go to
http://help-thien-nhan.blogspot.com/
http://help-thien-nhan.blogspot.com/
Any ideas you have are appreciated!
Thanks
Mail: CTY SEA Design
675B Nguyen Kiem Street
Phu Nhuan District, HCM City, Vietnam
Tel: (84-8)412-0985; Mobile: 84-903423978
Elke Ray <elkeray@yahoo.com>
HCM City, Vietnam - Friday, May 30, 2008 at 12:31:28 (GMT)
An old friend had her legs amputated AK about 10 years ago. Today I saw some news about monkeys controlling prosthetic limbs with their brains. I got on the web and - although it is not directly related to the news - I found out about the Otto Bock C-legs.
My friend uses high-tech but not computer controlled prosthetics and walks with with one or two canes - although stairs etc give her great problems - for short distances, e.g., from the car to a store or to work.
Do you know of Double AK amputees who have had much luck with the C-legs? I'd like to do some research on this before I mention it to her.
Best
Robert Flood <rpfecon@gmail.com>
Washington, D.C. USA - Friday, May 30, 2008 at 02:27:05 (GMT)
Lorie Tatum...
Indeed you are correct...women & men are different amputee's. Yes we want our prosthetic limbs covered and to look good {BUT} also function properly.
Are you telling us no-one will be able to tell you are an amputee?
Who is making your cosmetic covers?
I would love to know.
Thanks
Ann Gillian L/BK <lgillian@windstream.net>
Ohio USA - Thursday, May 29, 2008 at 20:28:20 (GMT)
Ron Webber in Savannah, GA...
The best of luck with the Coastal Amputee Network. It is a great name & a great idea.
I only wish more amputees would do what you did in jump starting another needed Amputee Support Group.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, May 28, 2008 at 14:30:24 (GMT)
WOW - did I just enjoy the last 2 hours or what -
Reading the Stumps R Us GUESTBOOK of course.
I have been an left AKA since April 2004, from an unusual running accident, but that is another story (everybody's got one).
I attended the ACA national convention in Atlanta last year and what a blast that was and I promised myself that I would come home and start a much needed Amputee Support Group in Savannah, GA (a far piece from U). So I finally decided 48 weeks later to get off my tail and do it.
Today it became official, the Coastal Amputee Network, was born, and in less than a day, I wrote press releases, contacted speakers (a Local PGA professional, with 2 leg amputations, who has been featured at Walter Reed Hospital), O & P support, DME folks and everyone is Happy and so am I.
I am paying for the first meeting place at a state college, just so everyone feels comfortable with the fact that there is no under the surface for this group and no one is sponsoring it.
All day I have wonder if I was crazy until I happened on your website. Dan you are the man in this crazy world and you are right, "It is just an inconvience."
God Bless you and pray that July 10th, 2008 is gonna be a Wild and Crazy time.
Ron Webber
5501 Woodland Drive
Savannah, Ga 31406
912-313-1711
Ron Webber <coastalamputeenetwork@comcast.net>
Savannah, Georgia USA - Wednesday, May 28, 2008 at 14:26:19 (GMT)
I drop by this site every 6 months or so. Today I read of several people with pain, though much greater pronounced, similar to mine. Usually I just have a mild electric tingling, which occasionally increases to feeling Im attached to a power transformer shooting into my stump through my head. If it continues for more than 3 hours, I'll take a pain pill.
I'm fortunate to have a high pain tolerance.
My prosthetic maker told me of another client with similar pain which prevented her from doing almost anything. She got a Botox shot and it stopped her pain. He said perhaps some people would need them more than once, but that she's walking now and doing fine.
Additionally, two other information bits. Due to the fact I got a job last year, my state vocational services paid for my latest foot so I could continue to be a productive member of society. It's a potential source for others who can't get health insurance. (My last quote was eight years ago, through the state, of $420/month, with a $3200 deductible. I decided to eat instead.)
Though I haven't seen him in eight years, my doctor was the best! Thomas Moore in Atlanta, who was head of Orthopedics at Emory University, and is now head at Grady Hospital. Though a severely underfunded public hospital, it has an amazing staff, and Dr. Moore saved my knee and my life. I heard in his residency he specialized in amputation, and it showed. When I developed a bone spur, he cleared his schedule to perform surgery the next morning. Great surgeon, and a good heart.
I'm bk (due to a car twisting off my foot against a lamp post eleven years ago - hey! I'm alive). I'm also part of that half of one percent who has muscle control.
I got a new prosthesis last week, which works by vacuum.
The liner is an Iceross Seal-In, ribbed with five rings to create the air seal when I push into the prothesis, air pushed out the valve. The prior three plus years, I had a pinlock. Does anyone else out there have this style? It feels very different, I suppose because the contact is lessened. At night, I initially also have red impressions on stump from the pressure, which of course fade out. I'm hoping with this leg to finally run again, and ride my bike more easily, without the wad of material behind my knee, but I'm hoping the tingling sensation I feel now is the same as before, and not circulation.
It's Memorial Day, so I'll be calling Kenny, my prosthesis maker, tomorrow, but I'd like to hear from other amputees.
(By the way, if anyone is near New Orleans, Bayou Prosthetics is wonderful.)
Thanks for a useful site.
Naomi
New Orleans, LA USA - Monday, May 26, 2008 at 20:14:27 (GMT)
Chris Cosgrove in Dogpatch, AR
A Stumps 'R Us Survival Kit is "In The Mail"
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, May 25, 2008 at 01:56:53 (GMT)
I love your web site and all the cool advice and info on it.
I was in a really violent accident last March where the p/u truck I was driving was t-boned on the passenger side at high speed resulting in my left arm being sliced off above the elbow by the seatbelt that's supposed to protect you during things like that.
My postal address is:
HC 73 Box 12A Dogpatch, AR 72648
Chris Cosgrove <lovetheblues501@hotmail.com>
Dogpatch, Arkansas USA - Sunday, May 25, 2008 at 01:54:18 (GMT)
Request for references for surgeons with a high level of experience with stump revisions and will take the advice of a prosthetist prior to surgery
I have been a LBKA for the last 31 years. I have been very fortunate to have had a minimum of problems over the years and was lucky enough to find Jim McKean, CP, here in Austin back in the early 90’s.
In 06 it was discovered that I had developed a very large bone spur over the last 30 years and it was pressing on nerves in my stump causing it to go numb. I decided that I had to have it removed and figured that I would have the surgery, heal, get refitted with a new leg and continue on as before.
Well it hasn’t worked out quite like that.
I have really had a hard time getting back to where I use to be and it sure isn’t for the lack of trying of Jim and the other folks at Hanger. My surgeon really wanted to be minimally invasive and removed the spur and left the other side of the stump as it was. I now seem to be getting really loose skin on the non surgery side and it wants to fold over creating painful creases by the end of the day. I have the uneasy feeling that the only solution to this will ultimately be surgery.
I had to take off over two months from work last year to heal from the spur removal surgery so I don’t want to do anything immediately. Right now I just want to gather some information. I would like to ask anyone out there if they know of a surgeon that has a good reputation for specifically performing stump revisions.
I live in Austin, TX, so I have could easily travel to San Antonio, Dallas, Houston, or Oklahoma City if necessary.
This would be a last resort but I am very motivated to get back to the level of activity and comfort that I have had over the last 30 years. Thanks in advance for any advice or opinions you may have.
John Hamilton <john.hamilton@roche.com>
Austin , TX USA - Tuesday, May 20, 2008 at 14:50:04 (GMT)
Hey Len,
This is directed to your wife :)
Hey Girl,
Let me tell you as a bilateral BKA......you do NOT let anyone hold you down or back as an amputee. My greatest fear as a bilateral was learning to balance and what I would not be able to do afterwards, and let my say this.....I ride motorcyles, I wear high heels {not perhaps as high as I used to wear them, but I STILL wear them.
This spawned many heated discussions with my Orthopaedist and Prosthetician who continue to argue that prostehesis are for "functionality" and not for "fashion" and my counter to them is why can't you have both??? So today, I have many sets of "legs" with different heels settings....
1} tennis shoes,
2} Flat sandals,
3} 1 1/2 inch heels.
Soooo, I won, prothesis can be for functional and for fashion. It just took a Computer Engineer Female to show them how to make it work!!! I wear dresses and skirts and to this day NO ONE can tell.
There is a difference between men and women amputee's.
Men don't care wearing and showing the world their prosthesis and women want no one to notice their prosthesis. We paint our toes, we wear sandals, and the cool thing about it is, no one can even tell.
Little changed after my surgery. Although, I had to change my single's ad after my surgery to say....."Men with foot fetish's NEED NOT APPLY :)
I lost several toes, then came the complete amputation. All I can tell you is to be patient and allow yourself to heal completely! Baby your incisions and take care of your skin.
After my surgery, I asked the surgeon when I would walk again without assistance and he told my 1 year. I look at him and said, "THAT IS NOT ACCEPTABLE"! 2 months from the day of my surgery I was up walking without assistance.
The other factor to help me was my Prosthetician....I went to his office and the first thing he asked me was, "What did you do before your amputation?"
I told him and then he told me that EVERYTHING I did before, I would do again!! Well that's not true, I couldn't walk on ice after my surgery, but I didn't care, because I couldn't do it before my surgery.
Lorie Tatum <lorietatum1963@insightbb.com>
Foster City, CA USA - Friday, May 16, 2008 at 03:48:09 (GMT)
Hello,
I have received a request for an amputee support group in Spanish. Do you know of any in this area?
Thank you!
Mary L. Garcia <garciam9@sutterhealth.org>
San Leandro, CA USA - Wednesday, May 14, 2008 at 17:20:04 (GMT)
I am a BK amputee, and would like to know if there is a web page or blog which compares all the different feet like Springlite, Freedom, Flexfoot etc. that are available.
Your information would be greatly appreciated.
Jose H. Suarez <jhsuareze@gmail.com>
USA - Tuesday, May 13, 2008 at 17:48:05 (GMT)
Giancarlo in Tumwater
There are support groups listed on the Amputee Coalition of America website, amputee-coalition.org. There is one in Lacey called the "South Sound Amputee Support Group", but it does not have contact information, so check the phone book. There are others also in the general area, from Hoquiam to Seattle/Bellevue.
There is also an outdoor group based in the Seattle area, Outdoors For All Foundation, at: 2 Nickerson Street, Suite 101, Seattle, 98109-1652. 206-838-6035. Their website is at outdoorsforall.org.
I too am an AK living in the NW (Longview). I also started as a BK, but because of infection from the original surgery, moved up (so to speak) to AK while still in the hospital.
Good luck!
Richard Morgan <Richard.Morgan@steelscape.com>
Longview, WA USA - Monday, May 12, 2008 at 20:54:09 (GMT)
Steve...
Hell on Earth is the only description I could come up with to describe your pain problems...that & the incompetence of the ER people you encounter.
The only solution I can offer is what saved my life. Self Hypnosis. It only works if you are highly motivated to make it work. Obviously you would be highly motivated.
You have one of two courses to follow to begin this new journey.
1) Contact Medical Hypnotist Seth Deborah Roth at sethdeborah@hypnotherapyforhealth.com right away. I know her work and would recommend her without equivocation. She lives and works in the San Francisco Bay Area.
2) Buy Self Hypnosis DVD, CD or Cassette tapes to teach yourself the process. That is what I did 20 years ago before meeting Seth Deborah. You can find the DVD, CD or Cassette recordings through GOOGLE.
If it were me I would contact Seth Deborah right away.
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, May 11, 2008 at 15:57:28 (GMT)
Hey, Dan.
I've been reading up on the procedure that deadens the nerve endings during the surgery to remove said limb. One guy says his pain dropped to about 1% of the the amount of pain he had been experiencing. Honestly, about the only thing that I can't seem to master is the intermittent spasms that shoot up and down my legs (mostly down the legs, and mostly my right hand side, the side most affected by my spinal cord injury.)
Because I had lots of foot surgery prior to my amputation, when I'm having the spasms, I feel the old areas that were injured. My right foot had most of the flesh ripped from the top side, from the ankle to the toes, and when those stupid spasms hit, they tend to "relive" the injury, by flashing through my body with violent abruptness. It's a funny predicament because I had these same spasms before my leg was amputated. But after 18 years, I can't figure out why I still have such severe attacks.
After 60+ surgeries, you can obviously understand that most oral medication doesn't do much for me anymore. (I have a formula for prescriptions: triple the dosage.---But I don't want to burn out my liver, either.) For years I have avoided any medication and I just "put up" with my spasms as they only occurred a handful of times each year.
In the past 3 years, the winters have been excruciating for me as the cloudy weather can trigger my spasms to start, and then I'm screwed for the next 8 to 24 hours. I can't handle that every week!! I've been doing this crap for a long time, and when it gets unbearable, I go to the ER for an injection. But that's a major hassle and at certain times, I'll get some jerk doctor who thinks I'm there just to get loaded, and I'll only get a prescription for some oral meds. Talk about a waste of time and energy! When it comes to effective pain relief, I need an injection or nothing else even comes close. The real shocker is that I'm going to the same hospital I went to when I had my wreck....I shouldn't have to put up with the imcompetency.
I only want to sleep once I've been "getting zapped" constantly and I'm worn out from being tensed up and having my legs thrash about for the past 15 hours or so.
Other than that, I think I'm good. How are you? I'm really trying to finish my book. I just wish the setbacks could be better managed. I don't want to do any epidurals; I had a friend that died during one of those. (That's really not it; my bones are so mangled in the lumbar region that they couldn't even get the needle to penetrate the proper area when I tried one years ago, and I 'd rather like to avoid that unpleasant experience if I could.) Besides, doing repeated epidurals is no way to manage that kind of problem.
Is there any new way to limit my nerve activity? Sometimes my toes feel like they're being hit with a hammer, and then it goes away for a few seconds and returns. Sometimes the pain stays in my thigh instead of shooting all the way down. It's bizarre and it depletes my energy level. Years ago, that was one thing I did look forward to. I figured that after the ampuation, I wouldn't have those damn shooting pains anymore. I was wrong about that. They are very active today. I recently had an MRI that confirmed that I've got 2 bulging discs and 1 herniated disc, nothing new there. But I don't believe that I've got a bone spur rubbing in the wrong spot, etc.
I just have these intense flare-ups that make me pull my hair out. The bad thing is that my hair is pretty thin these days.
Hanging In by Hanging Out
Steve Bogna <thegreat1@socal.rr.com>
Newhall, CA USA - Sunday, May 11, 2008 at 15:54:19 (GMT)
Well....where do I start? You have some varied questions, and I will try to reply with some history of my own, and a little "how I see it" thrown in as well. This may get long, but please bear with me.....and hopefully what I share can help.
Some of my history is on the "Stumps R Us" site but I will reiterate some of the details to make sure you have a better perspective of where I am coming from.
My amputation occurred in September of 1980, when I was 30 yrs old (left foot). The surgeon at that time had a choice to make on my leg due to what was left.....the farm equipment took off the lower part of my foot including toes with portions of the metatarsal bones remaining. This surgeon at the time had read about a modified Symes where the tendons in the shin area of the leg is attached to the pad of the stump to prevent the backward pulling on the pad and stress to the front part of the stump pad. Kind of a "fore and aft" motion on my stump pad was created---I could actually wiggle the end of my stump as I tried to lift and drop my foot that wasn't there any more. The doctor at the time said he could have done a BK (transtibial amputation) but felt I would have more durability and leverage walking with a Symes (a longer residual limb has more to work with and more surface in the prosthesis for weight bearing).
The actual amputation happened in late September, and I didn't get into a prosthesis until February of the following year. That one lasted until my leg shrank down to get into one in September of 1981....just about a year after the accident.....so it took about a year for my leg to atrophy to a "mature stump" shape. That prosthesis lasted until 1998 (it took a year in 1998-99 to get used to that new prosthesis) when I started running for added exercise, and my stump lost more volume to the point I needed to get into a new socket.
Now some comments on the pain level......the initial accident was ugly....with limited technology at the time to manage pain....the strongest stuff I got was demerol. I had phantom pain from the get go, and continued to be very tender throughout the years. The doctor told me one of the benefits of a Symes was that it was long enough that if I had to get up in the middle of the night to go to the bathroom or whatever, that I could just hobble on the end of my stump......Ha-Ha.....I could never put more than about 10% of my body weight on the end of my bare stump. The area in the front of the stump pad where the tendons in the front of the leg were attached continued to be very sensitive, and never did toughen up with the years. Cold temps made it extremely sensitive, and doubled the phantom pain activity.
Since I tried to continue to farm for the next few years after the accident (I had lots of livestock as well) I had to be on it in all kinds of weather outside. The first year in the two prosthetics were very tough, because the stump was continually changing, and was always rubbing blisters. Every visit to the prosthetist created a need to visit another time or two just to get the socket to fit better. The more I was on it in the first few months, and that year, the more phantom pain I had, and the more pain overall I experienced....but at
30-31 years of age.....I just tried to put up with it. And over the years as I tolerated the prosthesis and the pain....and got out of farming......then and now into sales.....I am not forced to be quite as active and can manage the physical demands.
Now to be sure we are talking "apples to apples" by what I understand as a Symes amputation, and what I had was where the tibia and fibula (lower leg bones) are intact and the stump pad is the part of your heel tissue that the Achilles tendon is attached into. The process is named after the doctor that originated the amputation in the 1840's in England.....a son-in-law of another famous British doctor. (sorry, not to be too anal, but wanted to be sure we are on the same page)
Now on to the near past....about three years ago....in April of 2005 my stump became VERY tender....to the point I could not walk on it without terrible pain. As a few weeks went by a blister on the end of my stump developed and peeled off, and a large crack in the stump pad remained.
I visited a doctor in the practice I had originally gone to with the accident, only a much younger doctor since my original surgeon had retired long before. X-rays proved to show that I had calcium deposits in the end of my stump...in the soft tissue of my stump pad. Those calcium deposits along with the cracked skin caused the pain. I felt that if I could get the skin to heal back up, that the pain would subside. (People with intact feet have heel skin cracks that come and go, and I thought that I could get my pad to heal.) By October of that year (2005) the skin had healed quite well, and I thought I was on to beating the problem, but with cold weather setting in, the skin cracked open again (by Feb 2006) and I was back in terrible pain with the open sore and awful phantom pain......someone always wanting to drive a knife into by big toe that wasn't there, along with lots of other sensations.
So I went back to my doctor I was visiting, and he suggested doing a BK revision. I was running away (in my mind) from that choice, because the first amputation was so painful I vowed to not live through another amputation. From that Feb-Apr-June time frame I was fighting to get that stump pad to heal back up, with little success and LOTS of pain....I was physically going downhill. By some act of fortune and divine guidance I came upon the Stumps R Us website, and Dan Sorkin emailed back to me about the Ertl Reconstruction website.
I pursued William Ertl at OKC Med Center and had surgery in July 2006 to reconstruct the stump into a BK....the very thing I feared.....and am doing very well with the resulting stump. I have about 1% of the phantom pain had experienced before, and get around very well with the prosthesis I have now. Mobility and balance are as good as what I had with the Symes.....but it does take more energy and effort to get around.......one burns about 130% of the calories as a BK amputee compared to an individual that is intact.
So the original Symes did serve me fairly well for about 26 years, but did outlive its usefulness according to some friends with medical background. My need to go to another reconstruction surgery was necessary just due to the normal "life" of the Symes amputation.
The other piece of the whole equation is to go to a reputable prosthetist that listens to your needs and is willing to keep working with you to get the prosthesis to fit you. If the person isn't willing to hear you out, find one that will. The prosthetist is as important (or maybe more so) as the doctor in this whole thing!
Now, with all of that said......can I say go out and get an Ertl? Well there are a lot of people that sing the praises of it......including me.....but you have to be the one that decides it yourself......and if you do......go to one of the Ertl doctors that get it right the first time.....don't go to a doctor that does a modified version.....you can read on Dan Sorkin's website of the many folk that have tried that and came out needing more modification. Get it done by an expert the first time.
That is enough rambling from me for now. Hopefully I have answered some of your questions. If you would like to talk in person, and you have a phone I can call you on.....I have nation wide calling on my office and cell phone.....send me your number and I will call you.....at a time that works for you.
Here's hoping all of this noise has helped a little bit, and let me know if I can help in any way.
God Bless.
Dave Paschold
402-423-0308 office
402-239-6947 cellular
Dave Paschold <dlpaschold@landolakes.com>
Lincoln, NE USA - Thursday, May 08, 2008 at 02:59:14 (GMT)
My 11 year old grand daughter, a below knee amputee, is going to camp for the first time. The type of prosthesis she is now using does not stay on while swimming.
I wonder if anyone has had any experience with the dry pro prosthesis protector?
Is it durable?
Does it keep the prosthesis on? etc.
Thanks
Libby Appley <raylibby@mvtel.net>
Mountain View, Arkansas USA - Thursday, May 08, 2008 at 01:09:40 (GMT)
I have been a symes amputee for about 2 years due to a motorcycle accident when I was 16 that left my left foot mangled. I am now 56 and am having trouble getting a prosthesis that I can wear more than a couple of hours.
I have noticed by reading from your web site Stumps R us that a lot of symes amputees seem to eventually opt for a higher amputation.
Did I make a mistake?
I was told how great it was going to be and I would be able to do anything I want but am not getting to that stage. Seems to be getting worse.
Can you get me in touch with someone who has gone this route and tell me the reasons for opting for another procedure.
Thank you!
Charley Whisner <charleywhisner@comcast.net>
USA - Thursday, May 08, 2008 at 00:57:24 (GMT)
Can you send me some group addresses in Ventura, Santa Barbara or West Valley (calabasas, etc.) since I live close to these areas?
Thanks
George Musser <gmusser@socal.rr.com>
Southern, California USA - Wednesday, May 07, 2008 at 18:36:49 (GMT)
My right leg was amputated in 2004. First BKA, in June, as a result of a kayaking accident ... then AKA, in August, as a result of infection that the VA missed.
I have tried to behave as if my limitation is more of an inconvenience, rather than a disability. I play basketball in a league while in New York, and was quite active. Since I moved out to Pacific NW, things have changed. A lot less transportation. A lot of cordiality, but very little intimacy.
I have kayaked the south Pugent Sound, and that was okay, but lonely. I have also tried to snow ski, and that turned out to be a disaster. I have a prosthetic, but my walking is limited because of painful infections in my LEFT foot, and my resisdual leg can not take more than 1/2 hour on treadmill.
I am going to start aquatic therapy next week, so maybe I can get involved with water sports.
I live in Tumwater WA, a small hamlet outside of Olympia/Lacey. I have been out here since June of 2006, and have only crossed paths with ONE other guy in a manual WC. I am confused and lonely ... for the first time ever. I do not know how to process being alone.
The AA meetings seem different. There just is not much service that I can provide, and that was how I have gotten to meet people.
I am closing out my 24th year of abstinence.
I have tried traditional churches, but I just can not get into it. A friend in New York suggested that I check out 'Stumps-R-Us' as a source of PHYSICAL activities.
What to do .... now, please.
Giancarlo <Chuckfurer@aol.com>
Tumwater, Washington USA - Tuesday, May 06, 2008 at 23:13:39 (GMT)
2 questions:
Do you know of any consultants to give us some advise on remodeling a house for a double amputee?
Any list of contractors?
Thanks
JoAnn and Frank <moffittbusichio@yahoo.com>
Contra Costa County, CA USA - Tuesday, May 06, 2008 at 02:42:37 (GMT)
Please review this: It might be of some worth
I've been reviewing alot of the postings, and I am amazed to see how many people have trouble getting a good fit for their legs! (I'm sure this is less of an issue for arm patients, as you are NOT bearing weight on it, etc.)
DUDE! I know you already know this but the proper fit is the essential key element in achieving a painless product!! It's the fit above all that determines if the patient will be a happy person---I know this to be true.
I thought my unique situation created what I thought was a rare problem in obtaining a good fit. I have to rotate my pelvis in order to walk, due to my limited range of extension in my legs. So, this twisting motion has to be taken into account so I don't run into a problem with friction, etc. I'm sure there are guys out there that have a BKA but they walk so well that you cannot even notice! Let me tell you, I'm not one of those guys. My gait is probably the worst possible gait that would allow a person to still get around. With an artificial limb, you can imagine the extra complexities. Enough boring details! What I am getting at is this:
for people in Southern California, (I guess I should say Los Angeles Area)
Jeff Vranesh of Reseda Prosthetics is very skilled, and the 2 of us have figured out a bunch of my problems. I've had at least 5 legs made by Jeff. I've done the split-toe (No, not camel-toe...) Flex foot, (with the air-bladder for adjusting the stiffness-a waste of time...) and others. I switched back from the ratching pin system because, although it allowed for better flexing of the knee because the rear of the socket can be cut really low, (Something I requested to allow me better range of motion, mostly for rock-climbing) I didn't like the fact that I would always manage to accidently bump the release button at an inconvenient time. That in itself wasn't really the problem: The fact that I knew it could happen really bugged the s*** out of me, so it was sort of "on my mind" all the time. It's bad enough being a gimpster; nobody wants to worry about parts coming off, too. I tried it for a few months, and never got over that nagging feeling, so I told Jeff we needed to go back to the suction/liner style. Jeff hates the fact that I burn through the sleeves pretty often, but it is what works for me. I have Medicare part "A" & "B", and I have never paid Jeff a penny for any of his services. He personally delivered to me on one occasion a sleeve when I couldn't get over to his office. I get about 2 sleeves a month from him. Sure, I could use more, but the price is right, so I try to get my sleeves to last as long as possible.
The guy is dedicated, he doesn't drive a big fancy car, and he cares about his finished product. Of course, he can't build your leg for free, but if he could, he would. I think he takes most any type of insurance that has the proper coverage--a rare thing today!!!! I'm so glad my wreck happened back in the day when you didn't even know how much your medical bill was, provided that you were covered--The insurance company just paid the bills.
Another point to consider: The sleeve system just feels a bit more snug when it's working right, and to me, when the leg fits well, I tend to not notice that my leg stops just below the knee. When my leg fits perfect and I walk and walk and walk, I feel like I'm tired all over--in both feet, if you know what I mean. If the leg has piston action, you deal with it, but it definitely lacks in the comfort zone. With piston action, you get "reminded" of where the leg ends with every step since you feel the rubbing action. It's just a few details but they are critical factors in getting the prosthetic to be a tool, not an impairment. You wouldn't go to work barefoot, would you? (Only if you were a surfing instructor...) The leg is like a shoe, it's something you need. Actually, my leg is great for playing tricks on people. I wouldn't have that attitude if the leg bothered me, so it's ultra important to work out all the bumps.
The pin system doesn't really suffer from piston action, but to me, the top of the leg feels too loose. And that, combined with my uneasy feeling that the release button would let go, this prevented me from liking that configuration enough to stay with it.
Anyone who needs some help can call his office (818) 993-5441
Jeff Vranesh Reseda-Prosthetics 18441 Bryant Street Northridge, CA 91325
www.resedapro@aol.com
I'm sure if you can get to his office, he'll do the rest!
Enjoy what you can.
Steve Bogna <thegreat1@socal.rr.com>
Northridge, CA USA - Tuesday, April 29, 2008 at 22:14:06 (GMT)
My girl friend in her late 50s, had an LKD amputation in ’05. She is fit, in excellent health and was very active physically prior to the event.
Although her prosthesis seems satisfactory, she walks very slowly and usually with assistance from a companion on one side and a cane on the other. Being aware of the risks of injury particularly to her hip, she has a great fear of falling. She feels the need to consciously maintain active mental control over her walking process.
We have discussed her exercising perhaps for an hour every day using a fitness treadmill with side handrails for the purpose of improving and developing greater confidence in her gait.
Is this a reasonable way to address her situation? Are there treadmill recommendations for this purpose?
What are some alternative solutions to dealing with her fears and gait?
All suggestions and recommendations are appreciated.
William Alfred <walfred@gmail.com>
Pittsburg, CA USA - Thursday, April 24, 2008 at 20:34:41 (GMT)
I hit a car head-on with my motorcycle resulting in an impact force of over 110MPH. I had 44 broken bones, spinal cord damage, and massive internal injuries, but I was also 16 at the time.
I had a ruptured spleen, collapsed Right lung, torn stomach wall, ruptured bladder, I lost 18 units of blood from a severed femoral artery.
I have had 64 surgeries, the last one in 1990 when I chose to amputate my right leg to “get on with life” since I was convinced I could not salvage my foot to my satisfaction.
Since my pelvis was fractured in 10 places, I had an incomplete spinal cord injury, mostly affecting my right side. They said I’d never walk and I’d be in the hospital 2 years. I proved them wrong on both counts. I was done with them in 99 days (and 41 surgeries) and I went back to school the very next day.
I rock climb, ride motorcycles, and anything else that I feel like doing. I now have a set of twin boys, age 10. I’m now 46, and I can help others get through their own traumatic ordeals. I am writing an autobiography specifically to address how people let barriers hinder their progress in life. I refuse to do that-ever.
I am also in the process of developing a portable, heated garment that people can wear to keep their stumps warm when they are not wearing their prosthetic device. Battery powered, with 5 heat settings, etc. It works well for me and I think it might help others, too. If you are interested in knowing more about it, please feel free to contact me.
Thanks
Steve Bogna <steve@cbdcabinets.com>
USA - Wednesday, April 23, 2008 at 23:55:17 (GMT)
Pin vs Suction
We are all different, but I for one find the pin system to be very uncomfortable. It milks my stump during the day to where the stump is elongated and distorted. The pain level commences at this point and gets quite aggrevating unless I reassemble 1-2 times during the day.
I switched back to a suction socket which happens to also be a vacuum socket. It is by far the most comfortable system I've used to date.
The pin is easier to donn and doff, but more uncomfortable during the course of the day. It's also a pain in the *** to have to undress and reassemble during a busy day at work.
Neal Seigfried <neal9935@hotmail.com>
Bixby, Oklahoma USA - Tuesday, April 22, 2008 at 00:05:23 (GMT)
I'm a partial-foot amputee and need help and some suggestions.
I need something that can be made by my prosthetist that I can wear in place of the part of the my foot that is missing. I need something that isn't bulky and can be worn with a regular shoe.
That is the objective.
My prosthetist has made 2 things for me and they just didn't seem to work. Any ideas, websites, or products that you know of or may have used, companies or prosthetist that you may know of in my area. Please feel free to contact me. I need to know that the product is going be comfortable to me and something I don't have to worry about coming off period. That's my fear!
Thank you!
Michael Reed <mreed1123@yahoo.com>
Atlanta, Georgia USA - Monday, April 21, 2008 at 02:46:09 (GMT)
I was going to UCSF for prosthetic care. My husband got sick and he had to have open heart surgery so we couldn't get back to UCSF.
We went locally to Hanger. Found out from Hangar that my knee, which is a C-leg from Otto Boch is a donated leg from someone who passed away from cancer.
I have had the same socket since I lost my leg last July.
So when we went to Hanger, we thought they would make me a new socket.
WRONG!!!!!
They said a C-leg can only belong to one person!
SUPRISE!!!!!!! They will not touch my leg or give me a new socket, because of liability.
After much research, found out this leg was registered in 2003 and has never been serviced.
My husband and I do not know what to do. We contacted John Crane from Otto Boch and he said someone should still be able to give me a new socket. But we can't find anyone.
Hangar wants me to purchase a new microprosser knee, pay 8,000 for a copay. We don't have one penny for that. Then they will give me a new socket.
I have a Kiss-Lock for a socket which UCSF started me off with. It is heavy, can't get any clothes over it.
Meg Wolff had me E_mail you a long time ago. She said she has the best leg she has ever had.
Any Advice?????????????????? I just want to walk.
Thanks
Arlene Peterson <Pflagship@aol.com >
Ripon, USA - Tuesday, April 15, 2008 at 16:06:03 (GMT)
John Loring...
I have never used a pin and locking system, but I have had no tibial pain with the suction socket I've been using since 1982 (LBKA also).
I had considered changing to the pin locking system, and my prosthetist advised me not too - he said a lot of people complain about the constant "pulling" feeling
on the end of the stump. I'm sure you know what that feels like.
This feeling does not occur with suction/sleeve style of prosthetics, at least for me, although I have never heard that complaint from a suction wearer.
I wish you well with whatever your choice is!
James Prial <james.prial@gmail.com>
San Francisco, CA USA - Monday, April 14, 2008 at 13:39:57 (GMT)
Hi fellow amputees!
To Karen in BC Canada who wants stumpy stuff like t-shirts, mugs, etc.: There is a site called Cafepress that has all sorts of cool things for us stumpers! It is at
http://www.cafepress.com/buy/amputee/-/pg_2
For Len in Foster City, CA: There are numerous relief methods for phantom pain buddy. But you might want to start at
http://www.amputee-online.com/amputee/phantom.html
and also check out the reference links here on Stumps.org.
I’ve heard several times from those in the know that if one method doesn’t seem to be helping, then by all means continue to try other things. And I’m sure I speak for others on the forum who wish the best for you and your wife, and her operation this week.
For me: I’m nervous about my upcoming purchase of my definitive leg prosthetic (I’m a LBKA since last year this week due to an infection that set in after foot surgery).
Has anyone ever used a pin and locking prosthetic and gone on to use a suction suspension system? Or vise versa? I have a great deal of pain in the terminal tibia area of my stump and would like to know which system is more comfortable over the other. I’m currently using a pin locking socket.
Thanks!
John Loring <johnloring@comcast.net>
San Rafael, CA USA - Monday, April 14, 2008 at 12:09:18 (GMT)
I have been an active CFII (Certified Instrument Flight Instructor) for more than 25 years.
I am a LBK and have been since 1968.
I have no problems with rudder control or "feel" for the prosthetic placement. In time it becomes natural.
In order to properly make positive contact with the brakes (located in the tops of the rudder pedals) I switch to a Peg Leg.
The Peg allows greater flexability and more accurate placement to activate either the rudders OR the brakes.
In order to earn my SODA (Statement Of Demonstrated Ability) to the FAA FSDO I was given a flight check using the Peg Leg.
Piece of cake!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, March 27, 2008 at 02:12:17 (GMT)
My name is Bill, BKA since 2000 had childhood cancer at age of 14. Lost leg due to radiation tissue
damage. Had revision in 2006 because of osteomyelitis. Had the dream of wanting to fly for years,
took my introductory flight a few weeks ago. Had a great flight was very excited about learning to
fly but, I had a hard time feeling the rudder petal with my prosthetic.
Will this improve with training?
Is their some advise you could give me?
Just found your site I think its a great thing for us amp's
to help each other.
Sincerely!
William Grill <stumpybill@hotmail.com>
Reddington Shores, Florida USA - Thursday, March 27, 2008 at 02:01:55 (GMT)
Dear Longview, Washington
Group Posting would not increase the value of the information or its dissemination.
Thank you for the suggestion...keep thinking!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, March 26, 2008 at 00:01:02 (GMT)
Dear Dan
I came across your site while I was looking for info regarding muscle shrinkage for my bka on the left-I have had since 2004.
Thanks so much for this site. it is very interesting and helpful.
Can you group post by state/country?
RICHARD ZEE SELZLER <richzee2@msn.com>
Longview, WA USA - Tuesday, March 25, 2008 at 23:56:49 (GMT)
Back in 2004 my husband became a DBKA or as he now calls it "cripple with attitude" seeing the world likes to put label on people.
Back in 2004 I found a website that sold cool stuff like I'm with stumpy t-shirts, mugs, & licence plates.
At the time my husband did not find them so funny and would not let me buy them.
Well four years later I have decided it is time to have some more fun and buy some stuff but now I cannot find the website.
If anybody knows of a website where I can purchase such stuff please tell me.
Thanks in advance
Karen Seddon <karenseddon750@msn.com>
Kelowna, British Columbia Canada - Monday, March 24, 2008 at 01:36:46 (GMT)
Don In Tara Ontario, Canada
About your situation and the setbacks...it happens. I am an Instrument Flight Instructor. Several years ago I was scheduled to pick up our new corporate aircraft in Georgetown, Texas and fly it back to California.
At the time I was Company Chief Pilot
A week before the pickup I fell and badly injured my stump...so badly the doc said I might never fly again.
I limped out of his office on crutches, bought a book on self hypnosis and proceeded to cure myself in time for the pickup in Texas.
Self hypnosis worked for me! It might for you as well.
About your suicidal chum. Either he will or he won't. His fate is in his hands...nobody else's.
Happy Easter!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, March 23, 2008 at 20:35:01 (GMT)
It's been a while since I contributed to the support group.
It's been a very long, hard winter up here in rural Mid Western Ontario. It's been a little over a year since I had the surgery (Left below knee amputation).. Everything was going well. My spirits were up and I was doing all that I was told to and then I took a bad fall on some ice outside of our local Habitat for Humanity.
I was in there buying some steel towel bars and various items I needed to make my life a little easier.
My knee didn't hurt at the time, but a few weeks later I started to have a significant amount of pain and the surgeon brushed it off as normal pain from over using my good leg.
Well, here I am several months and one MRI later and I get told that I have to have some surgery to my good knee and to be prepared for another bout of physical therapy for a few months.
I've already lost a year's business from my greenhouse and I've already spent money to get ready for this season, but it looks like I am going to be crawling.
I hope you guys don't mind if I unload some stuff I have on my mind. I feel like such a failure!
How is that you see so many people in the magazines and brochures that are running and skiing.. People that have lost both legs and here I am with one little amputation and I can't get it together.
I have a chum that I was in rehab with who emailed me this week to say that he is likely to have to have his other leg amputated and that they had taken his prosthesis away from to ensure that he wouldn't walk. He told me something that has haunted me ever since, he told me that he was seriously considering taking his life. I've not had a response to any of my emails from him and I do not have a phone number or address for him and I am thinking I should telephone the rehab clinic we both attended to see if they could help him, but another part of me tells me to mind my own business.
I have to be honest with you all and tell you I know exactly how this guy feels. We shared a room together for the better part of twelve weeks and shared a lot of personal stuff. Neither of us had many visitors as we both came from northern rural communities.
I don't know what it is like in the United States, but here in Canada we have a program that helps you with basic shelter and general needs, but I can tell you that they make you feel like the lowest of the lowest if you have to apply for government assistance and unless you are able to afford the best prosthetic equipment and medical support you best be prepared to work like you've never worked before at being able to take care of yourself.
I apologize to you all for being such a downer and I think I am going to have to have a little chat with my Doc to let her know how I'm feeling and maybe she'll give me the kick in the rear I need to get out of this funk....
Well, everyone thanks for letting my share. I promise you I am not the type of guy who would consider topping myself, but I am concerned with my chum. I do think I will call the rehab unit and talk with the Doc that was in charge. She will know what to do. I just hope I don't cause my buddy any more trouble then he already has??
Cheers to all and thnx
Don Levesque <Brydongrdns@netscape.ca>
Tara, Ontario Canada - Sunday, March 23, 2008 at 20:19:40 (GMT)
Greetings.....
My name is Charlie McGowan
I have been a (LBKA) since 2/05/ from diabetes. I'm 53 yeqrs old, and otherwise in good health, but back
in Dec 07, I slipped on some ice and broke my (right) ankle, wich turned into a mess in a couple of months.
Three surgeons tried very hard to save my foot/leg, but it just wasn't in the cards.
I have now lost my right leg (RBKA).
On 2/08, about a month and half out now I will be getting a cast for my right prosthesis on the 25th.
I walked very well with no aids for two years on my
(LBKA). One could hardley tell I wore a prothesis. At this point I'm very curious about how much different it's going to be walking on two fake legs.
Other bilateral amps have told me (NO PROBLEM) just be determined. I'm normaly very active so this is important to me.
I would appreciate any advice or input from my fellow amputees out there.
Thank you...
Charlie McGowan <irish_sky54@yahoo.com>
USA - Friday, March 21, 2008 at 13:36:02 (GMT)
Id like to post a question on the website.
Im bi-lateral amputee, left above knee and right below knee.
Ive got a dislocated hip following the original accident and will need some kind of reconstructive surgery and hip prosthesis
I was told today that maybe Ill need some kind of traction before any attempt could be made to fit a hip prostheis as the femoral head is 7cm higher than the shattered acetabulum.
Anybody out there ever have this kind of treatment and maybe give me some information on whether it works and what is involved, how long in traction etc?
Thank you!
Paddy Lynch <pjkett@gmail.com>
USA - Wednesday, March 19, 2008 at 22:25:16 (GMT)
My wife is going to have all ten toes amputated next week due to a bacterial meningitis infection that caused gangrene. It will be done at a Kaiser Hospital. All her toes are black and dead.
Here are a few questions that some of your members might be able to share with me:
1) Prior to, or during surgery, is there anything that I can suggest to the surgeon that would eliminate or lessen any phantom pain?
2) Is there usually phantom pain with toes amputations.
3) How long is the average recovery time?
4) What about weight bearing?
5) Do any members have "toe prosthetics?" How good are they, are they worth it?
6) My wife always loved wearing sandels, is this still possible?
7) What about any lotions to help healing?
8) Any helpful suggestions?
Thanks!
Len Duggan <lenduggan@yahoo.com>
Foster City, CA USA - Wednesday, March 19, 2008 at 14:30:13 (GMT)
Hi Everybody,
I saw the posting below from Rick Morgan -- Longview, WA, regarding his decision to go with a suction socket from a liner/pin model.
I am anxious about this decision I have to make too. It’s time for me to get my first definitive leg, having had a BKA on my left leg last summer. I don’t have insurance that will cover a prosthetic so this is hard-earned money for me. A lot of it!
Right now, I am in considerable pain.
Of course the socket I currently have (liner/pin) doesn’t fit me anymore since my stump has shrunk etc. But could I get some feedback from others in this forum on how they faired with their new sockets when they went to definitive?
What is most comfortable? Easiest to get on? Least problematic?
Those kind of things.
My prosthetist has told me to research the various options. But I don’t know where to begin without talking to my fellow stumpers who have gone through this themselves.
Any help would be greatly appreciated!
Thanks!
John Loring <johnloring@comcast.net>
San Rafael, CA USA - Wednesday, March 19, 2008 at 02:50:10 (GMT)
Hi,
I just found you guys on the web. I'm starting to get a little anxious and have been looking on-line
for information.
I am having a right side AK one week from today. I have a great team here in Portland, Oregon, a surgeon that I know and trust, a prosthetist, a PT, and a trainer. My care and prosthetic choices are all researched and planed. That has kept me pretty busy.
Today the enormity of this situation hit me like a train and , well really, it has been going on for a few days, and now I would really like to hear from someone that has been through this because hearing it from the professionals is not the same as hearing it from the people who have already been down this road.
The injury that is the root of all this was in 1974. I was a structural steel worker and fell while erecting a steel building in Boston. There were 4 reconstructive surgeries then and a lot more throughout the years, so I am not new to major surgical procedures, but the loss of the entire limb, even a limb that has been nothing but trouble for the last 34 years, is something that I am starting to have a problem with fully accepting.
I don't know if I am being clear so I'll stop. But I would like to hear from some fellow (almost) amps.
All the best!
Peter Klauer <peter@touchstonepdx.com>
Portland, Oregon USA - Tuesday, March 18, 2008 at 12:45:10 (GMT)
Saw your note on STUMPS 'R US this afternoon.
I have been an amputee since 1980, as a Symes (off at the ankle) until July 06. I had reconstructive surgery then, and am now a BK---left leg.
Times can be tough, and the pain unbearable, but it will improve. At about 18 months since my last surgery, I am back to about as full of speed as I can be at 57 yrs of age!
Stay in touch with Dan Sorkin.....he helped me immensely through my tough times in June of 06 as I fought my "old stump" and before deciding to have recon surgery in July of 06.
There are scads of people willing to talk and support you......just reach out, like you already have.
Call if you want to talk more.
Dave Paschold
1220 North 80th St
Lincoln NE 68505-2088
402-423-0308 office
402-239-6947 cellular
Dave Paschold <DLPaschold@landolakes.com>
Lincoln, NE USA - Sunday, February 24, 2008 at 03:24:03 (GMT)
Hi,
I am writing this from my fiance's (he is 50 years old) hospital room, two days after he had his right leg amputated below the knee. I am desperate for all the resources I can get for him.
For now, his contact E-mail is mine...leah4109@aol.com, along with my mailing address:
Jack Menashe
999 SW 185th Ave
#4
Aloha OR 97006
Thank you kindly!
Pamela Raway <Leah41099@aol.com >
Aloha, Oregon USA - Saturday, February 16, 2008 at 22:54:51 (GMT)
The Amputee Treatment Center has completely rebuilt their web site and has really improved it. If you get a chance go into it and check it out, and please pass this on to others for me.
Thank you!
Here is the site;
http://amputee-center.com/forum/
Jack Pickerd <sparksjwp60@suddenlink.net>
Jacksonville, Texas USA - Thursday, February 14, 2008 at 17:47:11 (GMT)
What an interesting site and I love the name.
My name is Bob(The Builder} and I live and work in Ky. My calendar age is 57 but I died four times the day I had my accident, so I started over.
I am four now.
Like Dan I also wrecked a perfectly good motorcycle four years ago. I lost my left arm above the elbow and suffered a brachialplexis injury to my shoulder leaving it with limited movement.
I knew right away that I was going to wear a prosthetic and I was going to make it work. I am now on my fourth arm and am trying to get another one. To say the least I am tough on them. I hope that this one is going to have some myoeletric functions.
I was invited to Vanderbilt University to see the ROCKET POWERED ARM in person. This is the technology that we all need to push development of new toys for us stumps. They are also working on a powered leg that actually will push off of the toe and knee. You can go from standing to a run instantly.
I hope that there are some other “uppies” out there that want to tell stories and stuff.
Life is not a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming...'Wow! What a ride!' I refuse to tiptoe through life only to arrive safely at death. My bones will mend, my glory may fade, but chics dig guys with scars.
Thanks for the site.
Bob Tessier <bob@independentbuilders.net>
Cadiz, Kentucky USA - Tuesday, February 12, 2008 at 00:50:28 (GMT)
Greetings from Upstate NY - Actually , NY 125 miles north of NYC on the west side of the Hudson River.
I will be visiting Sacramento, San Francisco and Sonoma/Napa from the 14th through the 27th (one of my friends is in the area for training.) I'll be on my own during the day so I'll be looking for things to do.
I am a left BK amputee. I think I'd like to rent a scooter. Is anyone in the area to suggest a reasonably priced rental store. I've found good deals in Florida and Tucson but I've had friends to point me in the right direction.
I'll be getting in Thursday night and leaving for San Francisco noonish on Friday. A wheel chair would also work.
I don't think I can walk long distances and want to save my "on my feet time" for places where necessary. Thanks for any assistance.
Karen Schubert <kara3215@juno.com>
Coxsackie, New York USA - Sunday, February 10, 2008 at 23:42:05 (GMT)
A few months ago I wrote about Monistat chafing gel or powder to use in socket liners. Well my husband finally found another product that I had lost behind the bed. I had purchased it about 2 years ago. Now this one doesn't say anything about controling oder as the powder does.
So here is the address.
http://www.hudsontrail.com/viewItem/46/407/7061/
HTO Low Price: $ 7.99 (S&H)
The Anti-Friction Skin Formula is a unique all natural skin lubricant created to stand up to rubbing and moisture, prime causes of skin irritation. It helps stop skin trouble before it starts, and it helps avoid the need for first aid products. It is remarkably comfortable and reliably effective. It works in dry, hot, cold, humid, and even wet conditions - and it stands up to wind, fresh and salt water.
Prevents: Blisters, Chafing, Dry Skin, Saddle Sores, Cracked Skin, Rashes.
It contains Aloe and Vitamin E
All-Natural Ingredients
Hypoallergenic
I am glad he found it. I'm using this now instead as I'm not a good one-leg stander these days. I hope this will be of help to someone else that might need a change of product.
As soon as I get my right leg downsized then I'm to be fitted for a new right socket with a relief spot so that my bone doesn't bottom out.
I'm 69 and this last 8 months have been a bit on the rough side.
Everyone take care.
Janet Toomey <wjtoomey@sbcglobal.net>
Herington, Kansas USA - Thursday, January 31, 2008 at 19:51:21 (GMT)
Dear Fellow Stumps,
After 13 years in a wheelchair, I had my hips replaced. Considering you I like to think I had my amputations at the top of the legs instead of the bottom.
Since my surgery I've lost 120 lbs and hiked, biked, and swam. Seeing you guys at the Bowling Party Saturday January 26th, 2008 reinforced my belief that we can get it done.
My wife Lucy and I got home in an exciting one day drive on the BMW Motorcycle/Sidecar. Monday PM I rode 7.2 miles on the bicycle and Tuesday swam 1 mile freestyle.
I hope to be in even better shape when we see you all again next year.
Curt & Lucy Kovacs
"Nothing is too wonderful to be true..." Michael Faraday
"A rock pile ceases to be a rock pile the moment a single man contemplates it, bearing within him the image of a cathedral."
Flight to Arras, Antoine-Marie-Roger de Saint-Exupery
J. Curtis Kovacs, M.D. <docbabe4u@yahoo.com>
Sun City, Arizona USA - Thursday, January 31, 2008 at 03:41:24 (GMT)
Barb Linder in Saratoga re: MAS socket
Barb,
I too am an AK since 2004, and am currently using the MAS socket, so while I don't have a LOT of experience, here is my two cents worth.
I went from a liner and pin lock with an ischial (?) containment socket on my 1st, temporary socket to a suction, MAS style on the definitive.
I liked the security (no losing suction) of the liner/pin lock system, but over all, the MAS suction is more comfortable. I was the first of this type of socket for the prosthetist I had at the time, and it took us a long time (and the threat of moving to a different prosthetist) before it was "good enough".
A suction is harder to adjust throughout the day, you have to take it of and redo it, not just "twist" in the socket for adjustment. But on the plus side, because it is being suspended from the entire residual limb, not just hanging off the end, it feels lighter, and the leg is easier to swing forward.
Of course at the same time, I went from a straight hydraulic unit to a C-leg, compliments of worker's comp.
As long as you have a competent prosthetist, it should be pretty comfortable. The key is communication and not settling for what the prosthetist thinks is good enough, but what you find acceptable. You are paying for this to be done correctly.
Good luck.
Rick Morgan <Richard.Morgan@steelscape.com>
Longview, WA USA - Tuesday, January 22, 2008 at 00:03:24 (GMT)
Rosemary Malarkey Social Worker...
The Barr Foundation Amputee Assistance Fund was established in 1995 through grants from the Barr Foundation. The mission of the fund is to provide assistance to amputees that cannot afford limbs, have no other financial resources, and to promote quality prosthetic care for all amputees. This is accomplished directly by providing reimbursement for materials and maintenance costs to prosthetists that provide limbs to amputees who have no other source of funding. This program is a cooperative effort between the Fund and the amputee's prosthetist to improve the quality of life of the amputee.
Benefactor sponsorships maybe also made available to those amputees whom have individuals, churches or business organizations to make tax deductible donations to the Barr Foundation whose funds can be specifically utilized for a select applicant.
In order for the amputee to receive an application, they must contact a board certified or state licensed prosthetist that may be willing to sponsor them.
The prosthetist ,considering sponsorship, must request the application directly from us by call 561-394-6514.
It is suggested that the amputee be evaluated by the prosthetist that may be sponsoring him/her, prior to them requesting an application in the amputee's name. Please provide the prosthetist with the amputee's name, address, date and level of amputation and telephone number.
At this time bilateral amputees are not being processed for funding unless another source of funding from an individual(s) or organization(s) is participating to share equally in the reimbursement level as outlined in the application.
The Applicant will be reviewed and interviewed for the screening process by one or more members of the review committee upon submission of the application, which is to be completed by both amputee and prosthetist. The applicants will be considered based on need, first time for prosthetic rehabilitation, age and general health conditions. Sponsoring prosthetist must accept our reimbursement levels as payment in full and provide a six
(6) month warranty for adjustments and components used.
First time amputees will be required to receive gait training as a condition of the approval by the sponsor, physical therapist or other qualified personnel at no cost to the applicant.
The application must be completed within 30 days and returned to us with a $25.00 nonrefundable application fee. We will then have 4-6 weeks to process the application and the prosthetist will be notified as to approval or denial. If the application is not received within the 30 day period of sending the application it will be cancelled and the prosthetist considering sponsorship will have to resubmit.
We will request that proof of denial of any other funding resources be provided at the time the application is submitted.
Thank you for your interest, if there is anything else we can do, please e-mail or give us a call at 561-394-6514
Sincerely,
Eva Barr
Barr Foundation
www.oandp.com/barr
www.ertlreconstruction.com
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, January 21, 2008 at 23:16:27 (GMT)
I am a social worker working with a patient who had a recent bka on his right leg. Shortly after his surgery he was informed that his insurance would not cover his prosthesis.
Beyond fighting this decision with his insurance company, can you offer any suggestions as to where else he might turn for help in funding the prosthesis?
Any advice would be great.
Thanks,
Rosemary Mullarkey <mullarkeylcsw@aol.com>
USA - Monday, January 21, 2008 at 23:11:02 (GMT)
Your Stumps R Us website is awesome and my family and I have learned a ton from postings.
I am an AKA since 2004, the result of a bloodclot that could not be cleared.
Does anyone have any information pro or con regarding the M.A.S. socket?
My prosthetist asked me to consider this type of socket for a new one.
Thanks for any help
Barbara Linder <buzzbarb@yahoo.com>
Saratoga, CA USA - Thursday, January 17, 2008 at 14:57:46 (GMT)
Test
joe <webmaster@stumps.org>
USA - Thursday, January 17, 2008 at 04:46:02 (GMT)
I was happy to stumble upon your website today.
My mom is a feisty and until-now healthy 92 year old, living with my 94-year old dad in SF.
This week, doctors at Cal Pacific Med Center amputated her leg below the knee due to vascular disease. She is in a great deal of pain, even with morphine. And she never complains about pain!
Today she was moved to the Post Accute Services on California Street.
Dan, my mom is frightened and so am I. I fully hope that she can go home again to live with my dad, with caregivers present.
With so many questions and so few answers, I am hoping that I can educate myself about her options through your website.
If she is able to go home, we must do serious modifications to her "row house" style home, where the garage is on the first floor and the living quarters is on the second floor.
So, if I can sign up, please allow me to. My mom is not Internet-savvy.
Also, if anyone has any immediate recommendations about caretakers in San Francisco or remodeling contractors... I am all ears.
Thank you!
Diane Martinet <dianenews@charter.net>
San Juan Bautista, CA USA - Friday, December 21, 2007 at 15:30:35 (GMT)
Almost 4 years after the amputation of my left leg A/K it seems that I must have a knee replacement for my right leg. Have any of you had this done and managed to stay active or become active again after the knee replacement?
I live in Germany where information from my doctor is not really forthcoming on what to expect..maybe he doesn't know as he hasn't had a case like mine before.
Thank you. I would appreciate any feedback!
Susan Heim <susan.heim@web.de>
Germany - Wednesday, December 19, 2007 at 15:07:43 (GMT)
Dear Carole in San Francisco...
Please call:
Amputee Car Controls...
Driving Specialties Limited
215 Commercial Street
Vallejo, CA 94589
(707) 553-1515 BUS
(707) 553-1504 FAX
Movable Accelerator Hand Controls
PHCIII Portable Vehicle Hand Controls. Cost $329.50. It can be moved from car to car. Check out
http://www.wheelability.com/labeled.htm
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, December 14, 2007 at 23:45:31 (GMT)
2 questions for fellow gimps.
1) What is the best driving technique for using the left foot? I'd like to be able to rent cars, but unless there is some sort of portable left accelerator (which I cannot fathom that Hertz would have), any tips for left foot driving would be appreciated.
2) Has anyone had a bad experience with hot tubs? I believe I picked up a whalloping infection at my stump site from my private, chlorine utilized hot tub.
Thanks so much for your great organization.
Carole McLaughlin <gewina@pacbell.net>
San Francisco, CA USA - Friday, December 14, 2007 at 23:41:20 (GMT)
A Succession of Angels
I was in Orlando, Florida, this week for my prosthetic leg. On Wednesday evening, I had kind of a magical hour. The prosthetic leg was fitting very well. So, before dinner I went for a walk by myself from my hotel in downtown Orlando, along Lake Eola — a straight route described to me by my sister Ruth, who had taken the same walk earlier in the day.
I started out on my walking journey, crossing a couple of major streets. I had to go fast to do that ... and I did. Then I walked almost effortlessly along this scenic route ... and everything and everyone seemed to sparkle, myself included. Freedom ... freedom of movement! The euphoria of walking on two legs once again (after a short inability) was making me high! I walked and glowed. People smiled, I smiled back. It was a dry, 75 degrees with a light breeze. Heavenly!
I arrived at my destination, a bookstore (which I later found out was the last independent bookstore in Orlando). I browsed around, selecting different titles. I plopped my few selections on the counter and asked if anyone had any recommendations. A friendly store clerk named Betsy kindly made some great recommendations. I settled on a book by Ann Dillard, The Maytrees.
During our interchange, Betsy happened to ask what brought me to Orlando, so I told her about my leg and prosthetist that I see there ... and, why I had traveled so far. She was very interested so I explained how the above-the-knee amputees seen on television are not the norm — they're the elite, the anomaly. That a lot of fantastic progress has been made in the technology of the knees and feet, but the socket fit (the part my half leg goes into) is still the crucial part. The part that has not advanced much. Sadly, socket technology has lagged behind the knees and the feet. Many above-the-knee amputees are not walking, or are very limited because their sockets don't fit properly. Like having a shoe that is the wrong size and filled with rocks, but you have to run a marathon in it and you can't possibly do that.
I have found a prosthetist here that is fitting above-the-knee amputees (AKAs as we are known) comfortably every day. He is committed to getting it right for the patient. He works until it is right — without any complaint or blaming the patient, something not many prosthetists do. His troubleshooting ability and teamwork are something I've never before experienced in 16 years as an amputee. It's always been an up-and-down process with the fitting, but I've NEVER worked with a more positive, compassionate, can-do and will-do person.
Betsy was amazed and said, "More people should know about him." I thought, "They will." Then she asked, “How did you find him?” I was surprised by this question, and I had to stop and reflect a minute, before replying with deep gratitude, "I was led by an angel."
A few minutes later, while walking back it came to me ... it was a succession of angels ... everyday angels, first Patty Rossbach, then Judge Farley, Merry Maiberger and Karen Hughes (all amputees). My succession of angels, people placed in my path along this journey. This journey that finally brought me to Orlando and to Stan "problems are solutions waiting to happen" Patterson. His technology is revolutionizing the fit for above-the-knee amputees, myself included. It's wonderful. Stan and his team are wonderful.
So, keep your eyes and your mind open ... because many angels walk among us.
www.becoming-whole.com
Meg Wolff <megwolff7@aol.com>
Orlando, Florida USA - Tuesday, December 04, 2007 at 14:34:03 (GMT)
Help please!
Hi and good morning!
Im Gail from Australia that lost limb left leg in car accident and now been dignosed after getting on with my happy, vibrant life with 3 autoimmune diseases.
The doctors in Australia say my outcome is poor.
Can anyone anywhere help?
They have tried me on dangerous medications to get me into a remission yet they break my stump down til it looks burnt real bad.I just want better treatments and not end up in wheelchair as its just not me. I want my life back.
I would be grateful to anyone that can help. I am prepared to travel anywhere in world rather than lose more of my leg/maybe other as joint in right not good now as diseases cause joint deformaties.
No cure yet. The doctors here say amputee's aren't a normal text book case and so they don't know what to do.
Someone must.
Are there other amputees that may have the same diseases that could help? I am so so desperate.
kind reguards
Gail
Thank you even if you read at least and unable to help, yet do hope can!!!
Gail Josephin'a <theprincess01@bigpond.com>
Australia - Thursday, November 29, 2007 at 22:49:31 (GMT)
I Am One Of You!
Hello, I am Lorie Carwile and I was so happy to see your website and how fun it looked. I live in Louisville, KY and am a bi-lateral BKA. I wish we had a group like you no-leggers out there.
My e-mail is Lorietatum1963@insightbb.com
Or
Lorie.Carwile@cardinalhealth.com
Lorie Carwile-Tatum <Lorietatum1963@insightbb.com >
Louisville, KY USA - Monday, November 19, 2007 at 20:45:04 (GMT)
Tonja in Oregon,
There are two support groups listed for Oregon on the Amputee Coalition of America's website. They do not include contact information but they are:
American Amputee Foundation of Oregon, and a group called OASES.
The ACA has a great website with lots of information and links to other websites as well for issues dealing with all parts of amputation. I check it regularly (I am an above knee now for just over three years).
You can also find a regional representative of the ACA in your area through the website who can assist you.
Best of luck!
Rick Morgan <rickanddev@yahoo.com>
Longview, WA USA - Saturday, November 17, 2007 at 16:33:37 (GMT)
My mother recently had her right leg amputated below the knee. She is only 56, she has diabetes and is a smoker.
It all started with her toe, then another then the foot and now the leg. These surgeries have all been back to back within the course of a few months.
She had the leg amputation on Nov. 6th, they sent her from the hospital to a nursing home last night; and of course she hates it there.
Do you know if there are any facilities that specialize in care for amputees? She is in San Bernardino, CA , so some place local would be preferable.
What support groups/ programs are there in this area that can help her (and her family) with this transition.
I look forward to hearing from you,
Thank you,
Elizabeth Gatgens <Elizabeth.Gatgens@Pacificlife.com>
San Bernardino, CA USA - Wednesday, November 14, 2007 at 03:48:43 (GMT)
Tonja Surgoen in Oregon...
Contact Brian Minard in Eugene at (541) 302-8275
Contact Janet Buck in Medford at (541) 608-6595
Brian had a support group there called PACE. Janet is a corresponding member of Stumps 'R Us.
Please let me know if you were able to contact either Brian and or Janet and whether they were of any assistance.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, November 12, 2007 at 23:08:18 (GMT)
I had a BK amputation in January of this year & I am trying to find an Oregon group. Do you have any recommendations?
I also have had a really positive attitude about my amputation until lately & just need to chat with some people in the same situation. Thank you for any help that you can provide.
Sincerely,
Tonja Surgoen
Tonja Surgoen <rvf@ccountry.net>
USA - Monday, November 12, 2007 at 23:05:14 (GMT)
ALPS Anti-Perspirant
Model:
Price: $13.96
Alps Antiperspirant with twice the Aluminum Chlorohydrate found in typical consumer brands to help control sweating within a socket or liner. ... more info
Alps Antiperspirant with twice the Aluminum Chlorohydrate found in typical consumer brands to help control sweating within a socket or liner. Specifically manufactured for amputees. Packaged in an easy to use spray bottle. 4 oz
Hi Dan,
I went into your reference links and found the following site
Amputee Supply Amputee Supply Company
There was the above deodorant mentioned by another person earlier.
So this should make it easier for those who can't get it through their prosthesis team. Also it lets you compare their price with this company's also don't forget S & H charges when buying on line.
Guess I will be doing a lot of surfing with all these reference links that you have. Sure gives a person something to do when they can't get up and drive some where to LOOK. I just love to go to stores and browse.
I gave my driver's license up after my second amputation. I didn't want to be driving down the street and have a phantom pain hit because they really make me stop what ever I'm doing.
Well seems like I'm going back to see how everybody is doing and if there are any new members.
Guess I should give a little more info about myself.
I retired at 60 cause I knew that I wasn't going to be able work much longer.
I'm a diabetic. In August 2003 I spent my 65 birthday in a drugged state at the hospital because they were trying to get the infection out of my left leg. Well it came down to take the leg and I live or don't and I die. So our daughter forced the issue with Wes to get him to sign the papers or she would.
So six months later in February 2004, I was in the hospital again with the right leg. The doctor took it off to the instep and a few days later there was complications. I told the doctor to take what ever he had to cause I didn't have time to get my heel healed.
I figured that I might as well kill two birds with one stone and get it over with.
So I survived and I'm still here. We are a retired US Army family. I retired from civil service at Fort Riley KS.
It seems that after we came back from Germany in 1984 my health just went out the door. I'm glad I went back to work as it gave me a lot of good memories when I have bad days. As I'm sure others have had to go through the same deal when it was their turn in dealing with their health problems.
When I was in my early 20's my mother gave me a good piece of advice.
"No matter how bad you feel there is always someone who is in worse shape than you." I've held that to be true all these years.
It takes a kindred soul to understand how I feel somedays, because they have been through it also. It is nice to be able to talk about some of the things I've been through and not feel that the person on the other end is being critical of what you are telling them.
Thank you for this open forum
Janet Toomey <wjtoomey@sbcglobal.net>
Herington, Kansas USA - Sunday, November 11, 2007 at 21:56:43 (GMT)
Ann Woolnough in the United Kingdom,
I admire your investigation and detective work regarding the use of drugs to combat Phantom Pain and the experience of others in the use of hip socket liners.
About drugs...I use self hypnosis to control Phantom Pain and or spasms when I get them. Other members of Stumps 'R Us use muscle relaxants, Bufferin or Aspirin or in one case, Chinese Moxie Sticks. It is an incense whose smoke seems to combat pain. That method did not work for me but it does work for Stumps member Karen Chu.
Amputees experience Phantom pain to varying degrees. Some have excruciating pain...some not at all. Those amputees who have had the ERTL Surgical Procedure described on page one of this web site performed by an ERTL trained Orthopedic Surgeon feel little or no Phantom Pain following surgery.
I have no experience with the hip socket question you posed so I asked our resident Certified Prosthetist Wayne Koniuk of San Francisco Prosthetics his opinion. I will forward that information to you when I receive it.
Thank you for contributing to our online GUESTBOOK!
80 Year Old Dan Sorkin
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, November 11, 2007 at 15:07:00 (GMT)
I entered your site today and found it very interesting. I have a couple of questions I would like to ask.
I had a full amputation of my left leg in May this year. I went into hospital for a knee replacement and had the artery blocked at the back of the knee during the procedure. 6 ops in 10 days later I had the amputation.
Whilst I am coping well with the loss, like everyone I am suffering phantom pain and my doctor has prescribed Lyrica (pregabalin) a neurological nerve pain reliever, and amitripyline (usually used for epilepsy and convulsive treatment).
Due to the concern of taking too much medication, I have now ditched the amitripyline and just taking the pregabalin.
Have any of your group had experience of these drugs?
At the moment I have a full hip type socket and my hospital consultant has spoken about a silicon (rubber) type attachment for the leg.
Do your group members find this latter method an advantage?
I look forward to any information you can give me.
Regards,
Ann Woolnough age 72.
Ann Woolnough <a.woolnough@hotmail.co.uk>
England - Sunday, November 11, 2007 at 14:43:49 (GMT)
Tanya McCabe Portland, OR USA...
Antiperspirant
Hi, It is me again. I went down further on your web site and found that someone (Tanya McCabe) was having a problem with perspirant with their liners.
Same here!
So I found the perfect item at Wal Mart it is called "MONISTAT INTIMATE CARE". I started with the powder and then quite a time later they came out with a gel. So now I've had to switch back to the powder because of my right leg.
I had a pressure ulcer to break open on my left leg, right on the tip of the bone. I was in a electric wheel chair for a good 4 months. My leg has gotten bigger because I can't wear a shrinker. In fact I'm having a bit of a problem using the gel socks that they put you in when you are first put into a temp leg. But Anthony my prothesis guy says being up on my legs may help the right get smaller. (Yeah it is a little.)
So he is talking about taking me out of the pin liner and switching me to the vacuum system mention below. And since I saw her letter (Tanya McCabe). Figured I'd add my two cents to see if it will help her. Also I will ask my guy about the problems she is having with the vacuum system. So hopefully we can both win on this subject.
Glad to hear she (Tanya McCabe) is on her feet. I've had back surgery twice lower and neck and I'm not able to stand up straight anymore. Right now I hope to at least get the tenderness out of the tip of my leg so that I can put my full weight on the right leg. There are days I feel just like the old saying "between a rock and a hard place".
Seems the older I get I get to that spot a lot quicker than I did when I was younger. Oh by the way I'm 69.
Janet Toomey <wjtoomey@sbcglobal.net>
USA - Saturday, November 10, 2007 at 03:24:36 (GMT)
Janet Lee Toomey...
You do not have to be a Stumps 'R Us Member in order to post a question or answer.
The answer to any question you want to ask is out there somewhere.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, November 09, 2007 at 21:14:15 (GMT)
CAN YOU POST WITHOUT BEING A MEMBER?
I've read your letters before, but didn't save or inquire about it.
I ran across a lady saying she has lost a lot of her friends because of her amputation. I'm a 2 X's BKA so I thought I would give her a new friend.
Thanks
Janet Lee Toomey <wjtoomey@sbcglobal.net>
USA - Friday, November 09, 2007 at 21:11:04 (GMT)
Leslie Krewson in Ohio..
Don't you dare go anywhere else. You found the right web site. Help is on the way.
Dan
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, November 06, 2007 at 14:53:44 (GMT)
I Am A Transmetatarsal Amputee
On july 19, 2007 I had a transmetatarsal foot amputation. I found your site tonight, but wonder if it is really where I belong. Everyone else's issues seem so much more serious than mine.
Please let me know if there are others with my type of amputation to talk to on your site, or if I should go elsewhere, and if so, where.
Thanks.....it seems like a wonderful site!
God bless you all!
Leslie
Leslie Krewson <lkrewson47@yahoo.com>
Elyria, Ohio USA - Tuesday, November 06, 2007 at 14:51:30 (GMT)
Laura somewhere in Canada...
It is if you live in Canada and can't attend the Stumps 'R Us California monthly workshops.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, October 28, 2007 at 14:10:28 (GMT)
Hi Dan,
Re: Stumps R Us (California)
Cheerful Cripples...
Is the 'Guestbook' the 'support group' ?
Thanks,
Laura
Laura <laura_teacher2@yahoo.ca>
Canada - Sunday, October 28, 2007 at 14:08:06 (GMT)
I am using the College Park Trustep at present (trial period).
I'm not sure that I really like it. It is much better on uneven ground and even a little better when going up slight inclines. However it is somewhat like stepping down on a block of wood in normal walking. Not near as comfortable as the carbon fiber heel of the renegade. A little more shock than I'm used to.
I think the split-toe is the key for uneven ground.It also doesn't have quite the spring forward feel that the Renegade by Freedom Innovations has either.
I'm sure that it would just take some getting used to.
I am looking forward to trying the All terrain from Endolite. I'll report on that when I get it. I told the folks at Hanger that I would give the Trustep a decent trial.
More later
Dan Hunt <jdldhunt@bellsouth.net>
USA - Saturday, October 27, 2007 at 19:36:26 (GMT)
Has anyone used or know about the Bartlett Tendon?
I just read about it on the O and P Edge website (Oct. 2007).
http://www.oandp.com/edge/issues/articles/2007-10_04.asp
It looks great for riding a bike, which I have done with some limited success. I would like to stay with my upright instead of moving to a recumbant.
It also just looks great for all activities.
Richard Morgan <Richard.Morgan@steelscape.com>
USA - Wednesday, October 17, 2007 at 23:10:40 (GMT)
Subject: Alpha Liners
I just got this this morning. It appears that Ohio Willow Wood, has a recall on some of their liners. Here is the web site to find out if your liner is the one being recalled.
http://www.owwco.com/linersearch/status.aspx
PEGLEG JACK, Jacksonville. Texas, USA
Pegleg Jack Pickerd <sparksjwp60@suddenlink.net>
Jacksonville, Texas USA - Wednesday, October 17, 2007 at 22:19:08 (GMT)
The best Rehabilitation Hospital I have found in the USA is the California Pacific Medical Center Davies Campus in San Francisco, California. Scott Rome, MD is the Director.
A majority of our Stumps Membership have had extraordinary, POSITIVE rehab experience there.
Dan Sorkin <DanSorkin@comcast.net>
San Francisco, CA USA - Tuesday, October 16, 2007 at 23:26:39 (GMT)
Hi Fellow Amputees...
I just got home after spending a month with about two hundred fellow amputees from all walks of life in one of Canada's largest, if not the largest rehabilitation hospital called The Chedoke Rehabilitation Hospital in Hamilton Ontario Canada.
You have to get your surgeon to refer you to this rehab centre and Dr. Sharon Grad.
Talk about a thorough work-over..
Wake up call is at 6am and if you want a decent cup of coffee you better move your butt.
This program is based on an aggressive physical therapy regime, so when we weren't in the gym or the pool working out we were snoring lol..
My pull through prosthesis was made for me on location with plastics and horse hide. They had four of us to a room, sorry Chedoke is run very much like boot camp, so if you've got a beef with someone you better speak up and work it out. There are both men and women from all ages. Spouses are encouraged to help out and generally we all go home on weekend passes. I live too far away to make use of a weekend pass, so I was one of but a few people rolling the halls in my wheelchair, but there are many things around to keep one entertained, so I wasn't bored.
I found in general everyone got along really well and we seemed to develop a special bond with one another.
Anyway, I just wanted to share my rehab story with you guys and to let you know there is help out there for us, we just have to hope our Doctor's know the best programs for us. (By the way I am eight months post-op from a radical below knee amputation)
I am going home October 26 to surprise my 90 year old mother by walking up the front steps of her house and knocking on the front door to wish her a very happy 90th birthday..... (Anything is possible)
Cheers to everyone from Don in Canada...
Don Levesque <Brydongrdns@netscape.ca >
Hamilton, Ontario Canada - Tuesday, October 16, 2007 at 23:20:14 (GMT)
Janet Stothers in Austin, Texas...
Stumps 'R Us Certified Prosthetist Wayne Koniuk of San Francisco Prosthetics says, "A well done SYMES would be much better in the long run. However they can be a difficult cosmetic challenge".
As far as an Orthopedic Surgeon in your area I would suggest an ERTL trained Orthopedic Surgeon.
On the ERTL Procedure section on page one of this web site you will find ERTL information and navigation to a directory of ERTL Procedure trained Doctors
Good luck!
Dan
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, October 03, 2007 at 12:45:48 (GMT)
My 50-year-old sister has damage to her left foot caused by blood pressure medications given her to recover from septic shock. The damage extends from her toes beyond the ball of her foot.
Originally we were expecting partial foot amputation. Now a surgeon has recommended Symes' amputation below the
ankle because it will give her better mobility with a prosthesis.
Any help you can provide that will help us research this and make a decision would be greatly appreciated.
She has no circulatory problems other than what was caused by the medications needed to save her life.
She lives near Austin, TX; and any suggestions for surgeons in that area would also be helpful.
Thanks,
Janet
Janet Stothers <stothers@sbcglobal.net>
Austin , Texas USA - Wednesday, October 03, 2007 at 12:38:59 (GMT)
Subject: All terrain foot
I have not tried it yet, and I have to admit it is designed and made by my prosthetist, but the Genesis foot by MICA looks like it would be pretty good.
Richard Morgan <Richard.Morgan@steelscape.com>
USA - Monday, September 17, 2007 at 22:18:43 (GMT)
Hey Anybody
Any feedback on the Endolite Elite(All terrain) foot? I looked at the Tru-step and the only draw back my prosthetist and I have is the replaceable bumpers. She thinks I'll go through 2-3 sets /year. Also just way more moving parts to wear out.
Does that make any sense?
The other foot she had suggested was the Freedom Innov. FS1000, but that doesn't look to have enough heel support for me. Who knows?!?
Let me know if you have experience with these feet...please.
Dan Hunt
DanSorkin wrote:
Certified Prosthetist Wayne Koniuk says, "*Inversion-foot turned to as if to look at the sole of the shoe. Eversion just the opposite.
Almost all of these feet come with a 30-45 day trial.
Check out College Park TruStep
Dan Hunt <jdldhunt@bellsouth.net>
USA - Saturday, September 15, 2007 at 20:55:49 (GMT)
I'm a 49 year old BK for 20 years, advanced teaching skier living in Charleston, WV.
I'm considering purchasing a TRIKKE (www.trikke.com). I would like to be put in touch with another BK TRIKKE owner before I spend the $500.00.
Any ideas?
Kevin D. Mann
1523 Quarrier St
Charleston, WV 25311
304-421-6556
Kevin Mann <kdmann2@yahoo.com>
Charleston, WV USA - Wednesday, August 29, 2007 at 03:31:27 (GMT)
Subject: Amputee Bicycling
To whom this may concern,
Hello my name is Kurt Yaeger and I am an amputee (BK). Prior to my amputation I was a professional bmx freestyle rider, X-games. I have ridden bikes my entire life. Since my amputation I have struggled with creating a suitable alternative to having a leg and riding a bike.
I am now in association with a company called ProTon Locks. This company has come up with an ingenius idea for pedals.
The traditional pedal system for an amputee was either a regular pedal which most of us struggled with or using clipless pedals. Neither of these systems worked well for amputees. The traditional pedal offered little or no help in regards to keeping your prosthetic in the correct position; your foot would slide off or hit the chainstay bar which would knock your foot off.
The clipless pedals locked your foot in well, however this type of pedal is hard to "get out of" and creates a dangerous situation.
The new device that ProTon Locks came up with is a magnetic system that allows your prosthetic foot to remain in place with little to no effort and at the same time creating an easy removal option if need be. This is by far the safest and most effective pedal that I have come across.
I would like to get the word out to other amputees about this product and have your organization take a look at this. Feel free to e-mail me or Dan Iller at ProTon Locks regarding any questions that may arise.
Thank you for your time,
Kurt Yaeger
The website is www.protonlocks.com
Kurt Yaeger <lameattack@hotmail.com>
USA - Tuesday, August 28, 2007 at 21:03:11 (GMT)
Hello,
I am a 38 year old B/K amputee in Connecticut. I was in a m/c accident on 8-11-06 and after 7 months of trying to get the leg to heal I had it amputated on 3-13-07.
Just wondering if there was anyone else from Connecticut out there.
Send me an E-mail, please.
Ed
Ed Tattoo <tattoo336@hotmail.com>
Northeast, Connecticut USA - Tuesday, August 28, 2007 at 20:53:09 (GMT)
Hi,
I'm Elizabeth from Pittsburg, CA and I'm ecstatic to find a group of cheerful people to connect with!
I'm 43, arthritic, with multiple joint replacements--including 5 of my right knee alone combating a staph infection I got in 1998. I've fought and fought, but now I'm finally throwing in the towel. I'm going to have my right leg amputated above the knee on September 24th.
It's kind of funny to write that knowing the people who read it are not going to recoil in shock, like everyone else I've told. People ask me how I am, and I end up comforting them--"Really, it's for the best. I'm actually looking forward to it." I've found the news can be a real conversation-killer.
I've lived the past few years with my right leg about 7-8 inches shorter than my left. With the help of a huge (but light) lift on my shoe and a huge brace on my knee, I've been able to walk (with crutches) and was actually up to three miles a day until this last flare-up of my infection made it clear that this is no life for me.
I was an active, vivacious, professional woman, and I want my life back. I've sat on the sidelines of my life all these years and now it's time to get back in the game.
I know this decision will greatly improve the quality of my life, but my knowledge of what I'm about to face is minimal. It seems I've found an environment in which I can ask my questions and maybe even crack my stupid jokes. That's very comforting to me.
Thanks,
Elizabeth
Elizabeth <betseymcquarrie@comcast.net>
Pittsburgh, CA USA - Monday, August 27, 2007 at 12:40:11 (GMT)
To Todd in Pocatello, ID...
Wow, what a story.
I too had a rod in my femur until too much infection caused my amputation to move from just above my ankle, to just above the knee on the right side. Mine was the result of an accident at work. When I tried claiming a double amputation to the State Claims adjuster she just said nice try, oh well.
Please put up a posting if you find the peg leg or skeleton leg you are looking for, I would love to have one. My first Halloween as an amp I dressed up as a pirate (I understand that is a common costume for us) and just wore the prosthetic I had since it is the modern day equivalent. The best part was when a 4 year old wanted to know if my leg was really broken or just part of the costume.
As Dan said, a sense of humor really helps. When I first realized there were no support groups in my area I debated starting one and calling it Amputees Anonymous. It would be like AA in that we would get together, discuss issues we were having, let others know of stuff we found out and just all around moral support. But it would only be a 6 step program (ba-dum-dum).
Hang in there.
Richard Morgan <Richard.Morgan@steelscape.com>
USA - Thursday, August 23, 2007 at 02:52:36 (GMT)
Todd in Pocatello, ID...
What fantastic survival instincts you had in order to save your 14 year old daughter from serious injury at enourmous cost to yourself. Your talent for survival coupled with the wit & humor you displayed here will serve you well.
My leg's off to you!
I had my Certified Prosthetist create a Peg Leg for me to use whenever I nstruct in airplanes (three times weekly). You can also pick up from eBay a used metal prosthesis to use at parties and Halloween. In fact your Certified Prosthetist will probably have a used one he cannot resell that you could use as a vehicle for entertainment.
About Phantom Pain...
Self hypnosis works for me. Try it!
Good luck Todd. Your Membership package is "In The Mail".
Dan
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, August 21, 2007 at 17:07:28 (GMT)
My name is Todd Bohn todd@bohnteam.com , www.greathomesinidaho.com ,
I am a 41yr old “investment property expert” realtor/hard core biker/father of 7 from Pocatello, Idaho.
I love your site. I just happened on stumps r us tonight while searching the internet for info about where to find a real peg leg or an anatomically correct metal skeleton foot (like the terminator) that I can wear for Halloween.
I’m being fitted next Tuesday for my first LBK prostheses. I decided in the intensive care unit that I’m gonna hafta have fun with this to help keep my attitude good. The day after the emergency amputation surgery I asked the team of doctors at the University of Utah Hospital if I could take my amputated leg home with me so I could have it stuffed and mounted with a brass plate saying TODD FINALLY PUT HIS FOOT DOWN AND HERE IT HANGS.
The doctors looked at me in horror and said “no, we burned it” I said “well, when I get my car fixed they let me have the old parts. Shouldn’t I be able to have my defective body parts???”
The looks on their faces was priceless.
My motorcycle and I had a disagreement with a pick-um-up truck that came around a corner in my lane on June 20th 2007. Needless to say, I lost the argument. My foot and lower left leg were virtually torn off by the front fender, I had a compound left femur fracture, crushed pelvis, my left arm has a compound fracture of the radius that still hasn’t healed and my left index finger was torn off (they sewed it back on but it doesn’t bend too well).
I now have a large plate bolting my pelvis together, a rod in my femur, a plate bolted to the 3 pieces of broken radius in my left arm and I’m missing 12 inches off my left leg including the foot. When people ask how I’m doing, I say “ I’m fantastic but a foot short” har, har.
One of my 14 year old daughters(I have triplets) was on the back of my bike when we hit the truck. I grabbed her with my right arm and pulled her off the back of the bike an instant before the collision. I landed on the asphalt on my back with my daughter riding on my chest. When we were finished sliding, she ended up with a scratch on one shoulder and one ankle. My biker buddies now call me “Tank” because the tank was about the only thing left of my Big Dog motor bike after the crash.
Now that I’m off the morphine (the DT’s really sucked) thanks Doc, I am having constant phantom pain. My missing toes are either on fire, getting struck by lightning bolts or they feel like I have an ingrown toenail. I’m going to try that acupuncture stuff. Any other ideas would be welcomed. The only remedy I’ve found so far is a few shots of Jagermeister, but the wife says I can’t do that every day. She’s probably right.
Oh yea, where can I find a terminator foot or peg-leg or other fun attachments other than that boring rubber foot.
Thanks for letting me purge my stump story
Tod
Todd Bohn <todd@bohnteam.com>
Pocatello, ID USA - Tuesday, August 21, 2007 at 16:56:10 (GMT)
David Gissen in Piedmont, CA,
Welcome to the Bay Area. Jody & I moved from Kingston Avenue in Piedmont (two blocks from Piedmont Avenue) 6 years ago to the retirement community of Rossmoor in Walnut Creek. We loved it in Piedmont but Rossmoor had what we really needed.
Please send me your complete USPS home address & telephone number and by return mail I will Priority Mail our Stumps 'R Us survival package to you.
Again, welcome to Northern California.
Dan Sorkin
www.stumps.org
Chief Stump
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, August 20, 2007 at 12:15:26 (GMT)
James in Halstead, PA...
My Certified Prosthetist at San Francisco Prosthetics says,
"If you think there is something wrong with the knee, Otto Bock will send a loaner knee,and check the function for you, they are great when the knee is under warranty. If this knee is not new you will find out then . Each knee has a serial under is easy to track.
The socket should be modified to make you more comfortable. Think about how it should be changed and ask your Prosthetist to get there slowly changing the socket for a few visits instead of all at once.
Call Otto Bock and tell them of your concern about the C-leg and I am sure that they will help you".
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, August 02, 2007 at 14:42:35 (GMT)
Pegleg Jack in Florida,
Accupuncture works for almost everybody. I am delighted it works for you!
I control my Phantom Pain with Self-Hypnosis. One of the female Stumps 'R Us members controls hers with Chinese Moxie Sticks. She lights them and the emitted smoke from the sticks wash over the Phanton Main source.
It works for her. I tried it. It did not work for me.
Good to hear from you again!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, August 01, 2007 at 00:40:18 (GMT)
DAN,
I am passing this on to you. I went out and had electric pulse and acupuncture treatment for my phantom pain that I was having in both of my legs, and WOW what a difference it made, haven't felt my stumps like this in years and was able to sleep with out using my shrinkers last night.
And the unusual fact is that I never had to take my legs off, it was all done up in both ears and you can feel it working as you are sitting on the table. I had about 8 needles in both ears for about 30 minutes and I could feel it working on my phantom pain that I would have when sitting down.
I highly recommend this to all amputees, but do realize that it may not work for everybody, because each and everyone of us is just a little different.
PEGLEG JACK
Jack Pickerd <sparksjwp60@suddenlink.net>
Florida USA - Wednesday, August 01, 2007 at 00:34:29 (GMT)
I've had a C-Leg (supposedly NEW) for almost one year but have had numerous problems with it, especially
recent conditions:
1. KNEE LOCK-UP occurs unexpectably and causes me to stumble & sometimes to fall.
Is this a mal-funtion of the micro-processor, the "stance-sensor" or a weak battery or whar?
2. SOCKET (2ND ) The upper hard-shell digs-into my groin area causing much discomfort. The prosthetists insists that he can't cut-it back, even an inch, to relieve this pressure for he says that the socket must extend that far to assure my support. To lessen irritation, discomfort, I've inserted a qauze pad between the silicon and the socket.
ANY OTHER SOLUTION?
3.INTEGRITY: Is there a possibility that I've been sold a USED C-LEG for I don't have a receipt or warranty document to indicate NEW?
HELP!
James Gurn <hesedhouse@epix.net>
Halstead, PA USA - Monday, July 30, 2007 at 20:24:19 (GMT)
Don in Tara Ontario, Canada,
What you are feeling is NORMAL! You have every right to be angry, frustrated and impatient. From your description it sounds as if you have an improperly fitted prosthetic device.
Precise fit is EVERYTHING!
No matter how high tech the device is if the socket fit is not PERFECT it will be uncomfortable and cause ulcers.
You have to be aggressive with your Certified Prosthetist in demanding a perfect fit. It does take time so don't be discouraged.
Again Don your venting is normal & healthy. You still have the proper attitude. I can only assure you IT DOES GET BETTER!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Saturday, July 28, 2007 at 16:36:27 (GMT)
Hi Dan and all....
Here I am again 6 months post-op Left BK. I think I would be lost out here on the farm in the middle of no where if it was not for your support site.
I started off so well right after surgery and was going full tilt with a healthy, positive attitude and all, but all of a sudden I started to get ulcers on my stump caused by my ill fitting temporary prosthesis and a limited medical support team here in the Bruce Peninsula. On top of it all my left leg is swollen and so painful that I am not able to transfer very well, so I am for the time being wheel chair bound.
I finally got to see the surgeon mid July and he told me the sores were caused by the prosthesis and sent me to the Chedoke clinic in Hamilton Ontario.
I am not able to drive anymore, so I've had to rely on support from volunteer drivers in my community. It is an eight hour drive round trip and I am pooped from having to go back and forth from Hamilton three days in a row.
The specialist there has come up with a plan for a different type of leg for me, but we have to wait for funding approval and then they will admit me to the clinic for a couple of weeks for fitting and to go through the rehabilitation all over again.
I guess I wouldn't mind so much, but I am out here on my own and I sit day after day doing the few exercises suggested to me by the team. I sound like a real complainer, but I guess I am just a little worried about how I will be able to get back to work and take control again.
I think I am a decent Christian man, but if I never see another Doctor or hospital it will be too soon LOL..
The really dumb thing about all this is that I am not worried about myself, I am worried about my dogs. They need exercise and fresh air and I can do very little to help them right now.
My big question is.. Our we allowed to have down days? our we allowed to get angry? I need to give myself a big kick in the butt and tell myself to get a grip, but I am finding it harder and harder to do that.
Thanks for letting me vent. I guess I just feel really stupid for allowing myself to let all this get to me.
Feedback would be appreciated and you can tell me to get my act together.
Cheers all Don Levesque in rural Canada
RR3 Tara, Ontario N0H2N0]
Brydongrnds@netscape.ca
Don Levesque <Brydongrnds@netscape.ca>
Tara, Ontario Canada - Saturday, July 28, 2007 at 16:19:56 (GMT)
Dear Fellow Gimps,
I first posted on this forum Wednesday, July 26, 2006 at 13:17:04 (GMT) I am a 38 year old left AK amputee, I have been since the age of 3. I wrote asking advice on what to look for in a surgeon as I was planning to have a tissue reduction surgery on my residual limb to remove the enormous about of loose flesh hoping that this will make being fitted with a prosthesis easier.
I posted an update on Thursday, July 12, 2007 at 01:39:10 (GMT) about finding a surgeon who felt confident in preforming the revision surgery to remove the large about of tissue that had grown on my stump. I posted that my surgery was scheduled to be preformed on Monday, July 23rd at 7am. I promised an update to that post... here goes.....
Well, it is done successfully!
Mechele <BryteEyez@aol.com>
West Fork, Arkansas USA - Saturday, July 28, 2007 at 02:24:11 (GMT)
Hello Dan and all Stumpies
Here goes folks I am a LBK and a RTMA so big deal. If you are a leg amp you put your leg on pretty much the same way I do, unless you are a double amp or a AK or a Hemi.
What do I like to do......play with my many cats! Yup my daughter has given me the title of THE CRAZY CAT LADY. I have 8 but will be giving up one since she no longer gets along with the pride. Or they don't get along with her, which ever came first. Love to play with my 5 grandchildren when I visit them. When my husband is not deployed or going to military school in another state I like to see him as well. You know the truly old saying, "If the Army had wanted you to have a wife they would have issued you one". No one reminded me of that when we married in 2000. Am I proud of him...does the sun shine in the sky????? Yup you bet. Also love to hang out at amp conventions and chat with folks, do some training of peer visitors for the ACA. Love my job the one that pays me money, I am a sign language interpreter, and I enjoy going to Deaf events. That should do it for now.
I live in VA so I most likely will not be showing up for many CA meetings. Was born in Jackson Heights NY but moved when I was 4, with my family, to West New York NJ, yes it is a real town. We could walk one block down from the apartment house to the BLVD and look up 42nd street. Hey now how is that for a trill a minute. Back in the late 50's and early 60's it was cool. Now the town is not even an inkling as to how I can remember it. Times do change.
My husband Bob as you read is in Kosovo right now. Due to come back to the states around the end of Nov. Where next? What does he wish to do when he grows up? We are not sure. See this is my second marriage and his first, get this gals I am 16 years older than Bob!!! No I did not marry him when I was in HS and he was in kindergarten. We are a fun couple tend to do our own things separately and together. Our best friends live on the base of Ft.
Belvoir, VA. Their youngest thinks I am part fairly godmother, part grandmother, part Miss Paula who comes to her house to play with her.
That is about it for now, hey write back to me, just please but in your message that you are from the amp group Stumps R Us. Of course I will check my junk mail since the mail allows all the sexual trash I DO NOT WANT and then sends stuff I do want to the junk file. Yikes.
See ya,
Paula
Paula Golladay <pgolladay@cox.net>
Belvoir, VA USA - Sunday, July 15, 2007 at 02:32:33 (GMT)
Paula in Falls Church, VA...
There is no fee to join the GUESTBOOK and read and respond to the entries. Should you ever come to California the Annual Stumps 'R Us Membership charge is $30 a year.
That entitles you to quarterly issues of our newsletter GIMPY and discounted member privileges at our monthly Northern California meeting/events which are posted on page one of this web site.
Our prayers are with your husband in Kosovo.
Dan Sorkin Chief Stump
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, July 13, 2007 at 15:26:01 (GMT)
Hello Dan,
In the way past I did hear of your group and looked at it and then with my mind leaking out of my ears forgot about it. DUH! I recall that it was hysterically funny. Aha, glad Ron King brought me back to the site.
So do I need to join to post on the web site? I did read that as I guest you could post, but does that allow me to post and read all or does joining, if you do do this, give me other privileges?
I am currently on the Heather Mills List, ok she is not my fave rave amputee but I like most of the folks on the site. I am also a lister on the Amp List on Yahoo.
I am Paula Golladay, LBK 2002 from osteoporosis, and a RTMA for the same reason in 2004. I am 58 and very proud of it by the way, I have a wonderful husband who is currently deployed in Kosovo this time around. Mom of two fully grown adults and the grandmother of 5 wonderful grand kids, all from my youngest daughter.
My homes address is:
Paula Golladay
6031 Madison Overlook Court
Falls Church, VA 22041
(Sorry it would be a long commute to physically get to the meetings, giggle, giggle)
Home phone 703 820 7987 (I am bad about listening to the answering machine messages)
Cell/Work Phone 703 304 5755 ( I do listen to these messages since it is business connected put can't answer the phone while I am interpreting)
Email: pgolladay@cox.net please put in the subject line that you are from Stumps R Us and I will keep an eye on my in box and my junk mail just in case my filters send the message to the junk file. Not you to the junk file.
Hope to hear from you soon,
Active Gimp
Paula
Paula. Golladay <pgolladay@cox.net>
Falls Church, VA USA - Friday, July 13, 2007 at 15:12:05 (GMT)
Hi Dan,
My name is Aimee Dryer. My husband Mitch is an Oneida, NY firefighter and was injured on April 22nd when a roof collapsed on him and his lieutenant while fighting a fire at a bowling alley. He subsequently had his right arm removed above the elbow on May 15th due to the 4th degree burns that completely severed his ulnar nerve.
We decided as a couple and as a family to have that done instead of having his elbow fused. We thought that by doing this he would have a better quality of life with a prosthetic than he would by having his elbow fused and not being able to move his elbow.
He had his ulnar nerve removed in a previous surgery before the amputation and we did not know to what extent if any of the use of his first three digits of his hand.
Since he had his ulnar nerve removed he would never move that the last two. He was in the hospital from April 22nd. of which he spent almost three weeks in a medically induced coma, and was discharged to the Rehabilitation Unit on June 6th. He went home on June 20th - which happened to be his two year anniversary with the fire depatment.
He had a police and fire truck escort all the way home from Syracuse. It was absolutely wonderful.
Mitch was burned over 20% of his body - all on the right side. He will need cosmetic surgery on his right ear.
While having to deal with all of the other things - I think the most difficult is his amputation... he was right handed. He seems to have a good spirit and seems to be coping well but I can see that he gets down and easily frustrated because he doesn't always see progress. I need him to understand that it will take time and will not happen overnight.
He is a very stubborn and determined man!
Well - it is late. Thank you for taking the time to read this. Please feel free to post and have anyone email me with suggestions or help on anything. We are very very new at this and I could use any advice people are willing to give.
Thank you very much,
Aimee Dryer
Aimee Dryer <mitchellandaimee@twcny.rr.com>
Oneida, NY USA - Friday, July 13, 2007 at 14:51:03 (GMT)
I first posted on this forum Wednesday, July 26, 2006 at 13:17:04 (GMT) I am a 38 year old left AK amputee, I have been since the age of 3. I wrote asking advice on what to look for in a surgeon as I was planning to have a tissue reduction surgery on my residual limb to remove the enormous about of loose flesh hoping that this will make being fitted with a prosthesis easier.
Now, approx 1 year later, I have finally accomplished what I feared was going to be impossible. I found not only 1 but 2 surgeon that are willing and are certain they can remove all of this tissue.
As I stated in my previous post the surgeon who attempted it last time claimed "too many blood vessels thwarted his attempt." I was disappointed, hearbroken and was out of my prosthesis for 6 weeks for no good reason, He did nothing to prevent the residual limb from swelling (edema??) while outside of the prosthsis for so long.
I talked these Dr's absoultely BLUE. I had a whole page of questions and did not let them leave the exam room until I felt ever question was answered to my satisfaction. So on July 23rd at 5am I will be entering in to the pre-anesthsia room to prepare for by tissue reduction surgery that will begin at 7am. I am excited, nervous, apprehensive, and fearful of my expectations based on what the surgeons told me the results would be.
And a funny thing about it.. is I am also wondering what my life will be like without the 10 lbs of loose flesh hanging off my left butt cheek, to actually have a left butt cheek again. and even funnier, I think I am going to be a bit nostalgic, (I think i am actually going to miss all that flesh!) I know, I know I am completely insane! lol. I will post again after the surgery to update once again about the outcome.
Mechele
Mechele <BryteEyez@aol.com >
????????????, ?? USA - Thursday, July 12, 2007 at 01:39:10 (GMT)
Dear Meg,
Thank you! Your success story was wonderful to read about. Thank God you are able to not only wear a prosthetic device but as a bonus you found a Certified Prosthetist that knows what he is doing!
Certified Prosthetists like Stan Peterson in Miami are rare in this culture. I only know of one other that takes a vital interest in his patients and is willing and able to spend the time necessary to solve ALL of the amputee's problems. He is Wayne Koniuk of San Francisco Prosthetics in San Francisco, CA. Wayne Koniuk and Stan Patterson are craftsman cut from the same cloth.
Thank you for bringing me up to date on your progress.
Dan Sorkin
www.stumps.org
Chief Stump
Too often we enjoy the comfort of opinion
without the discomfort of thought."
...john f. kennedy
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, July 12, 2007 at 00:08:49 (GMT)
Dear Dan,
I wrote you at the beginning of the year in search of a prosthetist. Things were not going well for me with my AKA prosthesis and I was looking for help. (I'm sure you hear a lot of his.) Well, decided to send you a POSITIVE story as mine turned out that way. Yeah! You probably don't always here the GOOD stuff!
Recently someone wrote and asked how things were going for me and what happened with NY? And what was happening with me now? Afterward I decided to send the reply to you as I thought you might like to know. This is it!
No, NY didnt work out for me. In the beginning it did, but my prosthetist wasn't able to maintain the fit as my limb changed. After another year of travel back and forth to NY every other week(a 7 hour drive each way from Maine) I got to the point where the leg was hurting so much I couldn't wear it. With my subsequent trips it didn't get any better. I was starting to say to my family, "This is killing me."
So, I thought I'd better stop going to NY.
I went for 3 months on crutches which wasn't what I wanted, but was at a loss for what to do. I got really tired of it, but focused on my work. Then started doing book signings on one leg and got pretty comfortable with that, but it was SO hard to get any excercise on one and I felt given my motivation, good health, good weight, and other things I had in my favor this shouldn't have to be my fate.
Then I set an intention about what I wanted, wrote it down (sent it to Stumps Are Us) and did more research. Then I let it go.
I didn't think I'd travel to Florida for a prosthesis, but three months later I did. It's only a 2 1/2 hour flight to Orlando from Boston (non-stop). There's soon to be a direct flight from Portland, Maine. And the leg is comfortable to sit and stand on, so no problem with flying. I couldn't have done that with the other leg.
So, I now go to Stan Patterson at P&O Associates. He has developed this elevated socket system for above knee amputees. It is a revolutionizing fit for AKA's, and he's teaching this to other prosthetists. I rode a stationary bike comfortably and walked a mile on the treadmill the third day there in a test socket. My good luck continues, and Stan is very supportive as far as being available if I have any problems. He is teaching me the system so that I can make adjustments if I have to. The best part is...he listen's to me. And it work's out great!
Stan Patterson is an incredible person. Very intelligent, compassionate, positive...his motto is, "problems are solutions waiting to happen". And he's really passionate about what he's doing. A born teacher, he loves to explain things as he knows this system in and out. He was willing to work with me in spite of problems with my insurance, since I had already been billed by the other place. He also has a great team of people working for him and they all work well together.
I walked 2 miles the other day. Haven't done that in MANY years. Stan believes that I will be running a 5K. I'm going to go see Bob Gailey (PT for gait training) in Miami when the weather cools down in the fall.
It's nice to have someone who believes in me, like I believe in myself!
So, it all worked out for the best (though it was a long road). Isn't it ALWAYS?!
Thanks for your comment and concern. I appreciate your inquiry.
All the best,
Meg
Dan thank you too for being "out there" in cyber space to listen to our requests, inquiries, etc. You do a great service as well. Thank you! Meg Wolff
BLOG: www.becoming-whole.com ~~~~~ WEBSITE: www.megwolff.com ~~~~~ EMAIL: megwolff7@aol.com
Meg Wolff <megwolff7@aol.com>
Portland, ME USA - Thursday, July 12, 2007 at 00:05:23 (GMT)
Hi!
I am a 50 year old woman who woke up on Feb. 25, 2006 with a my leg ice cold. I had my leg removed below the knee on June 19, 2006 at the Cleveland Clinic.
There is no support group in my area. I would like some support from any woman who has lost their leg.
I lost most of my friends because they can't deal with me as a amputee.
Please help,
Sincerely,
Barb Smith
Valley Grove, WV 26060
Barb Smith <Barbkasesmith@aol.com>
Valley Grove, WV USA - Wednesday, July 11, 2007 at 01:51:47 (GMT)
Hello everyone,
Just a one time mailing trying to reach out....
I just recently about 6 months ago lost my left leg below the knee and since than I have been trying to get in touch with others who may have similar situations....
Please visit my website:
http://www.artificiallimbsprosthesis.com
I am looking to see if I can help some who may not be able to get a chance to walk again - some hospitals cover the prosthesis and some don't -
I have heard so much about people being able to walk again with real good lookings like real legs ...
If you know of anyone who doesn't have insurance coverage and would like to walk agan - I hear that the prosthesis cost is real high like about 8-10K
I heard of this hospital in India where they can help. I have been in touch with the doctors there and I feel that this might help to avoid high costs and be able to walk again and be able to work again.
Cathie Kaur
Cathie Kaur <allamputees@yahoo.com>
?, ? ? - Friday, July 06, 2007 at 00:53:55 (GMT)
Subject:Ossur seal in sucktion socket for A/K
I have correspond with you in the past since I had trouble using the Ossur sealin for above knee amputation.
Well I finally last November found a Hangar office in Florida that made a proper fit and things were good. I was however gaining weight so I started a diet program along with more exercise and the fit becam loose enough that I completelly lost suction and the leg actually dropped off!
I was able to recover and hold it on by addingd socks per instructions and put them under the seal. The leg fit better but gradually I started to lose suction and the air valve would purge air on and off. I could feel my leg pistoning.
I went to the local office and they said for now to put socks inside the liner to fix the problem.
I tried that and it helps a bit but a number of amputees who have that system say that is not a good way to do it.
What is your opinion?
One expert recommended I try to place some ring under both sides of the sealin.
Have you heard of people doing that? Do you have any kits that may correct the problem?
Regards
Dave
Dave Lovull <dlovull1@rochester.rr.com>
USA - Monday, July 02, 2007 at 13:57:43 (GMT)
Hi Doug Hollowell ,
I'm 42 and had a hip disarticulation (not a hemipelvectomy) in 2004 due to a collision with a drunk in a pickup versus me on my bike up near Lake Berryessa.
While we are definitely a minority as far as amputees go, life does indeed go on with only one leg. Prosthetics are available, and I have one, but many HD's prefer to skip it all together, its a personal choice. They can be very cumbersome, and a lot of people, me included, find that they can just move faster and more comfortable on crutches and or a wheelchair. I use both depending on the situation.
I live in a condo with no special adaptive equipment, other than some grab handles in the bathroom and a shower stool. The key is having good PT/OT (physical and occupational therapy) after you recover from the surgery. Those wonderful folks taught me how to live indendently in a pretty short period of time during my stay at Walter Reed.
As mine was a left leg amputation, the only thing my car has to have is an automatic, as I can't press the clutch anymore. It was hard saying goodbye to my 5 speed and motorcycles, but as I said, life goes on. I still get to go to A's games, and many other things I had always done.
I met a fellow HD right leg amputee and he just taught himself to drive with his left foot, and he uses nothing special in his car either.
I can't answer the question about funding, as I was active duty Air Force when I was run over (stationed right by you at Travis actually), so the VA takes care of me pretty well in that department.
If it's a choice between getting infected and dying, or losing the leg, I would say the sooner you get started, the sooner you get over the rehab and get on with life!
Good luck and if you have any specific questions, feel free to email at the address below!
Ed Donnelly
Pt. Richmond Ca
itsed65@yahoo.com
Ed Donnelly <itsed65@yahoo.com>
Point Richmond, CA USA - Friday, June 29, 2007 at 19:56:20 (GMT)
Hi Dan,
My name is Doug Hollowell and I'm a neighbor of yours over here in Suisun City. I'm 51 years old, and I had my first hip replacements when I was 20, a result of Ankylosing Spondylitis.
Over the years, I've had revisions of both sides, but my right side has been the "problem child". Around 1998, I was informed that my right femur was eroding away, My orthopedic doctors tried adding pieces of cadaver bone during surgeries, but the problem continued. They even tried using an entire cadaver femur, with no luck.
Around 1999, I had my right knee and femur replaced. The specialist told me I was his second patient with a titanium femur, so I knew I was heading into uncharted waters. Well, everything went great for five years, until I developed an infection in the right hip, femur and knee. I've been told that there is nearly no chance of getting rid of the infection because once an infection gets into the metal parts there are no drugs that can clear it up.
Since 2005, I've had to have surgeries every 6-8 months to clean out pockets of infected pus that build up, primarily in my hip. Recently, I was told that the most successful way of ridding my body of the infection is to have a total hip disarticulation and, possibly, a hemipelvectomy.
I'm having a difficult time adjusting to the thought of losing my right leg. I'm hoping some of your group can give me insight to living life with one leg gone. I'd also like to find out what resources are available for making my home more accessible after the surgery.
I suppose, given enough time, I'll adjust to living without my leg, but I've gotta believe that there must be plenty of gadgets available to make life a little easier.
I'd also be interested to find out if there are any funds available somewhere to help defray the cost of changing ones home, car, etc. so that the adjustment doesn't break a person, financially.
Anyway, I'd like to hear from anyone who has gone through either a hip disarticulation, with or without a hemipelvectomy. This is a big decision, and I would like as much feedback as I can get.
Sincerely,
Doug Hollowell
505 Acapulco Court
Suisun City, CA 94585
707-422-1743
Doug Hollowell <hollow7@pacbell.net>
Suisun City, CA USA - Tuesday, June 26, 2007 at 23:24:59 (GMT)
Hello all,
I am a high powerline worker who lost my right leg below the knee 2.5 years ago. I am just curious to see if anyone has had any luck with Ossur's Proprio foot.
I live in eastern Washington(mountainous) and am hoping this foot will give me more mobility to accomplish my job climbing power poles?
Well hope to hear from some positive and negative imput,
Thanks for the site. I come to visit often. I have been given this afliction because my higher power knows that I will strive to be the best I can be and be a positive example to others.
THANKS SO MUCH
Steve Russ <madmuttly@yahoo.com>
Republic, WA USA - Tuesday, June 26, 2007 at 13:35:19 (GMT)
Hi,
It has been about a year and I still have issues with these Harmony Liners.
I'd like to find a liner from another firm that will work with the Harmony system. My next system will more than likely not be a Harmony unit.
I did try the Smith Liner. It does not work very well with the Harmony System. The Liners made for the Harmony,are just not durable... I believe the device should not even be sold, due to the durability issues.
Thanks.
Lee Thomas
leethomas@charter.net (note my e-mail has changed)
Lee Thomas <leethomas@charter.net>
St Louis , MO USA - Monday, June 25, 2007 at 23:25:43 (GMT)
Hi Dan and all;
Here I am again four months post up from a BK amp in Jan. Things were going great guns with my temporary prosthesis and I suspect that I dove in too fast and now I have developed several pressure sores on the residual stump.
My major problem is that I live many hours from medical support. At my last appointment with the nearest amp team I was told not to wear my prosthesis and to keep off my good leg as much as possible because the good leg is very sore especially when sitting still.
Now what?
The latest info from the amp team is to send me to a specialist in the big city to see about using another prosthesis system that has softer units against my skin.
I've felt that the temporary prosthesis didn't fit properly right from the get go?
The Doc told me that he didn't think the sores I have are caused by using the prosthesis, but they didn't invent themselves and they only appeared after using the temp leg??
I was a little distraught, but I can't afford the lack of communication between the medical wizards to keep me from reaching my goals.
Anyone have any tips on a different type of prosthesis that might work for me??
I am a very tall man tipping the scales at just over 200 lbs. ( I am 6' 3)
I enjoy reading what everyone has the courage to share and I welcome feedback.
Cheers all and take time to enjoy the summer
Don Levesque <Brydongrdns@netscape.ca >
Tara, Ontario Canada - Wednesday, June 13, 2007 at 18:05:15 (GMT)
Hi, I'm a Transmetatarsal Amputee (partical foot).
I wanted to know if there is anyone online that is a transmetatarsal amputee?
I currently have a posthetist but I don't think it's going to work out because he was trying to make a prosthesis for a Syme's Amputation. I don't have a Syme's Amputation. I told him that I didn't want that.
Then he showed me another type of product called a amputation gauntlet.
It looks like a leather boot that is supposed to fit in your shoe and it laces up in the front. I'm not happy with that solution either. He told me that I would have to send the shoe that I wanted it to fit so they can get the exact measurements for the insert.
But, there is a catch this insert my not fit all of my shoes. I want something that is interchangeable and will fit in any shoe that I decide to wear. Is there anyone out there that can give me some ideas of what to do. I'm starting to become very frustrated because the prosthetist and I have been trying to come up with something for about 2 weeks now.
Carmen
Atlanta, GA 30316 USA
Carmen Vita-Lopez <carmenvitalopez@comcast.net>
Atlanta, CA USA - Friday, June 08, 2007 at 19:29:13 (GMT)
Hi,
A little about me:
Due to burns when I was 2, I had both legs amputated below the knee when I was around 18( I'm 33 now). Because of the burns my stumps are extra sensitive plus I now have a bone spur. I can't handle anything hard on bottom of my stumps what's so ever. Due to other medical reasons I have to live with both of these types of pain.
I found your site while doing research on a few things related to amputees.
1: RTV foam for use as end pads. I was wondering if any of your readers had any 1st hand knowledge different types of foam. The only one I've tried in the past was A-2370. I'm not sure but the foam feels harder now and not sure if they changed how its made.
2: Due to having poorly made prosthetics for over 7 years I'm looking for some advice on getting my stumps used to pressure points that haven't had any direct contact for awhile. This is all due to my last set being made poorly and a local company that I finally gave up on after 3 years of them trying to make a good fitting leg. I've finally got a company I really like but a lot of places cant handle contact.. manly my calf muscles.
3: Due to burns the bottom of my stumps can't handle a lot of weight. Are there any tricks to help desensitize them. My nerves are over active. With just having a soft pad contact it is painful. For years I've haven't had any real contact on the bottoms and always get major water blisters because of the suction effect. So I'm trying to get used to contact.
Thanks Garrett
Garrett Fraini <cathryes@Yahoo.com>
Hemet, CA USA - Monday, June 04, 2007 at 21:55:47 (GMT)
Hello again,
I had my leg amputated in January of this year, I'm a LBK but currently walk with a stiff knee (I have a thigh corset) but spent years before this in a wheelchair with a useless leg. So, it's great finally being able to walk again.
I'm in my early 20s and it'll be great to speak to anyone around my age.
I look forward to hearing from you!
Katie <Kattiej85@aol.com>
England - Wednesday, May 16, 2007 at 15:43:38 (GMT)
Stumps R Us - casting call
Hello,
I have recently become involved in a movie being produced in Cardiff (UK), and not to beat about the bush, we are looking for amputees in the area who would be willing to play zombies for a few days.
I understand that for some of you this may be viewed as in poor taste, however I'm sure some would love the chance to be involved in this project.
Anyone Interested, email me.
Thank you for your time,
Neil Harper
Neil Harper <neil_j_harper@hotmail.com>
USA - Monday, May 07, 2007 at 22:49:49 (GMT)
Dear Celeste,
Thank you for sharing you ERTL procedure success with us. So many members of Stumps 'R Us echo your praise of this remarkable surgical procedure.
Dan
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, May 07, 2007 at 20:26:56 (GMT)
Hi Dan,
My name is Celeste and I found your email online. I was reading some of your advice about the ERTL procedure and I totally agreed with it. Dr. Ertl was my surgeon for over thirteen years, but has since left my HMO. His remarkable procedure gave me back a little bit of what my life was like before the amputation.
Celeste
Celeste <celeste93@peoplepc.com>
USA - Monday, May 07, 2007 at 20:24:16 (GMT)
Hi folks,
Here I am again.
I really appreciate all the feedback. When you send me a note could you refer to "Stumps R Us" in your subject line. I won't open email if I don't know who or where it originates.
I've had some bad days recently.
I guess the concept is just hitting home and I'm having problems with my temp leg. I don't know why, but something snapped in it and I can't wear it until I get to the city and see the folks at the clinic.
I suspect I picked up a virus at the hospital because I can't seem to get going. Anyone else have any problems with taking Lyrica pregabalin making your arms and legs feel numb?
For me going to the hospital is a three or four hour drive each way and by the time I get home I am a wreck lol.
I think one really has to keep a positive attitude and take it one day at a time?
Cheers to all and thanks again for all the help.
Cheers Don
Don Levesque <Brydongrdns@netscape.ca>
Tara, Ontario Canada - Monday, April 30, 2007 at 20:47:37 (GMT)
Hi Rick,
Although I do not know of one, it is my understanding that the e-vac system will work well for an AK. Your best bet is to have you CP contact the company that manufactures the system The name of the company is Smith Global. Good luck.
Jerry Bach <jjbach@aol.com >
USA - Wednesday, April 25, 2007 at 14:32:40 (GMT)
Rick you could contact
sales@ smithglobal.com
They are the manufaturers of the EVAC
jerry davis <jd97531@sbcglobal.net>
USA - Wednesday, April 25, 2007 at 13:41:43 (GMT)
Jerry & Joe
Unlike you two, I am an AK, due to a work injury 2 1/2 years ago. I used the liner and pin lock on my first knee, and still use it when I ride my bike, as I don't worry about it coming off as much. I use a suction fit MAS style socket on my C-leg I use everyday, and over all I like it more. Whether that is because the knee is easier to use, the shape of the socket, or the style of suspension, I do not know.
Do either of you (or anyone) know if the vacuum fit is available for Aks? I have heard about it, but do not know too much about it. I am not due for another leg/socket combo for a while, unless my shape changes.
For everyone else, I want to say thanks for being out there. I read this website, and another called Above Knee Amputee once or twice a week each, and even though I don't contribute very often, I like to "touch base" every so often, and see how/what everyone else is doing. Just knowing you all are out there is comforting. I don't run (no pun intended) into other amputees in my daily life, and there are no support groups locally (SW Washington State), so this is my outlet.
Thanks again,
Rick
Richard Morgan <Richard.Morgan@steelscape.com>
USA - Tuesday, April 24, 2007 at 16:23:04 (GMT)
Jerry:
I am rbk since 2001. I used the Alpha liner pin lock for 5 years and currently using the evac for the past 9 months.
I wouldn't go back to the pin lock system for any reason that I could imagine.
Like you I work long hours, 12, not 24, but long. With the pin lock I had to stop and readjust the leg every few hours. With the e-vac, I never stop. I can even take my pants and shoes off without removing my leg.
The only issue we both have is the sleeve. I am looking for the answer as well as you. So, whoever comes up with the best answer wins. I am going to try a new sleeve soon and will let you know the results. I am also going to try a cover over the sleeve for added protection, like the covers listed under sleeve art which is a link here .
Hopefully that will help.
Joe
Joe Bach <jjbach@aol.com>
USA - Tuesday, April 24, 2007 at 15:02:53 (GMT)
I was amputated L B/K in 2003. Ive been in a suction system harmony and now an evac. I would like to know what other amps prefer.
I am very active, sometimes working as much as 14 to 24 hours a day as a longshoreman.
The suction works very well except for tears in the sealing sleeves which happen quite often as I work around a lot of metal. Even though I work long hours I never have to add socks.
Just wondering how other amps like the pin locking system.
Thanks
Jerry Davis <jd97531@sbcglobal.net>
USA - Monday, April 23, 2007 at 21:42:13 (GMT)
Thanks all for the support from Don in Canada
Just a quick note to say thanks for the great support. It really helps. I get a little nervous out here on my own, but I am sure I will do fine.
Just a little laugh for you.
I was letting the dog out of the side door of my old farm house and forgot to put the brake on the wheelchair. I bent over to let the little guy out and I and the wheelchair went sliding out the door. I was laughing so hard that I couldn't get back up for a few minutes and the dog thought I was playing so I had him all over wanting to play tug of war with my shrinker sock lol.. I thought you'd get a kick out of that.
Well, it's late for me to be up so I am off to bed..
Take care all and thanks again for all the kind words of support.
Cheers Don
Brydongrdns@netscape.ca
RR 3 Tara, Ont. N0H 2N0
Don <Brydongrdns@netscape.ca>
Tara, Ontario Canada - Sunday, April 22, 2007 at 04:23:35 (GMT)
Hi Don in Canada...
You bring back memories of what I went through 6 years ago.
I came home just like you and went through the same thought process.
I started walking just like you and every day just went a little further. First to the front yard. Then to the end of the drive, before I know it, I was at the top of the street. Within a few months I was waling "the dog" for over an hour and even in the woods. This is after working a 10 hour shift.
My temporary leg lasted about 8 months before I receive my permanent leg. I just got my second permanent leg about 6 months ago.
So, hang in there my friend and before you know it you will be walking the dogs like you did before.
BTW: The dog I walk is my son's pitt bull, also on a leash.
Joe
Joe Bach <jjbach@aol.com>
USA - Friday, April 20, 2007 at 14:06:21 (GMT)
Don Levesque in Canada,
It has been my experience that the temporary prosthesis is replaced with a "permanent" one after 6 to 8 months depending on when the stump stops shrinking. I say "permanent" because they do wear out or need maintenance from time to time. Mine last from 3 to 5 years.
I have a hard socket with a RENEGADE foot made by FREEDOM INNOVATIONS. I love it because it allows me to walk on uneven surfaces and up and down inclined planes with no discomfort.
Once you are fitted with a prosthesis and have learned to walk with it you will have no problem walking the dogs.
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, April 18, 2007 at 22:35:26 (GMT)
Hi,
I was discharged from hospital Friday the 13th and it is great to be home.
I think it is important that I don't get lazy about my exercises so I try to walk (albeit assisted with crutches) the length of our lane on the farm twice a day (about 1000 ft.) I've yet to figure out how I am going to walk the dogs. I can't let them off their leashes as they would be off hunting in the woods and I would be lucky if they managed to return.
Anyone got any hints on that one?
The other question I have is how long does one usually work with the temporary prosthesis before I get fitted with my permanent leg, or is that always a work in progress?
I sure felt for Heather Mills when she fell dancing on TV. My heart really went out to her. I don't usually watch programs like "Dancing with the Stars", but I wanted to see how she made out.
I have a lot of respect for anyone who tries to overcome what ever challenge one might have..
The snow is almost all gone from this part of our province in Ontario, but it is still a tad chilly.
Cheers to all
Don
Brydongrdns@netscape.ca
RR 3 Tara Ontario N0H 2N0
Don Levesque <Brydongrdns@netscape.ca>
Tara, Ontario Canada - Wednesday, April 18, 2007 at 22:20:53 (GMT)
I first wrote back in November 2006 about my B/K. Since the time of my writing I am still totally disabled and bedbound. I was in a felony hit and run accident on October 23, 2006 and everyone, even my orthos were amazed at my recovery and release to home on November 19th. I was only home for four weeks of healing time due to a shattered left leg that needs bone insertion (part of hip or pelvis), plates and pins. When I went in on December 19th I expected to wake up with the efixiator off and a splint on my left leg, but woke up to the efix in a new position.
They found infection in my bone due to the dirt when I ejected and antibiotic therapy was started.
In January infection in my amputated limb was found due to absesses so more irrigation and antibiotics. I am now still waiting on word from the second lab to tell Infectious Disease if they are even treating both with the right medications as they do not even know if it is the same bacteria they are fighting.
I still keep my faith due to findingthis site and also a book called "Way of the Peaceful Warrior" see www.danmillman.com tell them Cheryl from Florida sent you, as his assistant sent me an autographed book, which is a must read for all about living in today and how we all have a purpose, but I do find myself more depressed as time goes by.
They keep telling me they should get the results back at anytime and they cannot take a chance with this as they have one chance to save my left leg and I do understand, and that alot of samples get sent in constantly but find myself wondering why it takes so long, and when will I ever move forward.
As I read through the guest book and see alot talk about infection it does help me to not feel alone in this fight but was hoping for some possible feedback from anyone who has been through infection related setbacks to help me to understand the wait and know the time framing others have been through. I have been told that I will be able to do everything I did before and I believe that as I am a fighter but just need to feel that I am somehow moving somewhere forward in this process.
I look through the different prosthesis information you sent me but they cannot fit me until they know there is no infection so even though I have a prescription for my beginnner prosthesis that is on hold too.
I guess I am just reaching out for some advice and inspiration from others in my situation. I have alot of support from my devoted husband, children, and small circle of friends but for them they do not know from experience how this can be, like everyone here does.
Sorry to be so long winded but I wanted to include all information related to my situation, and also wondering how advanced of a prosthesis I can get now that I no longer have health insurance and am on a share of cost Medicaid plan my share of cost makes no sense to me.
I live in Florida and was told that my beginner prosthesis would become my swimming/shower one as I asked about a waterproof prosthesis as I feel since we have an above ground pool ( we rent) it would be good therapy and also want to be able to sometimes shower without a chair or possibly even swim in the ocean. Is this possible or do you have to remove it for sea water?
Once my husband returns to work between that and my disability I may lose it my Medicaid and also wonder if that occurs would I qualify for the Barr Foundation as our outgoing bills are so high it will take all of my disability and most likely any pay he gets to pay our bills but on the website I only see that it is covered if you have no other means to pay and they say if I can return to work being on the prosthesis that many hours a day it may only last 3-5 years per prosthesis.
Also I wonder if I could benefit from the ERTL Reconstruction procedure? I was a General Manager for a restaurant when this occured and would like to reurn but it would mean 10 hour days on my prosthesis, maybe with this only time would tell??
Any information that all of you wonderful members here, and you too Dan would be SOOOO appreciated!! Once again sorry for asking so much but I just feel lost and think this is the best place I have seen for correct answers.
Sincerely,
Cheryl
Any individual emails are welcomed to calliecat420@hotmail.com, just please state in the topic replying from Stumps R Us as I am very careful about not opening unknown emails. And thank you again to anyone who is willing to write to me.
Cheryl
Cheryl <calliecat420@hotmail.com>
FL USA - Monday, April 16, 2007 at 13:32:01 (GMT)
Hi...my name is Katie. I'm 21.
I had an elective amputation 12 weeks ago after suffering from CRPS type 2 (RSD) for 11 and a half years.
I have a below the knee amputation but I have an unstable knee and have a knee corset that keeps my knee straight.
It wont be a permanent thing though.
I no longer have pain and the amputation has been a success.
When I was researching before my amputation there was a lot of negative news where amputation just made things worse for a CRPS sufferer. As it has worked for me it would be great to know if there are anymore positive outcomes.
If you have had an amputation to rid yourself of CRPS (RSD) and it worked for you then please contact me.
Katie
Katie <KattieJ85@aol.com>
Somerset, England - Wednesday, April 11, 2007 at 17:33:14 (GMT)
Hi Dan and Fellow Readers.
I am on a weekend pass from our local Rehab unit at the Grey-Bruce Regional Health Centre. It is Easter weekend and it has been snowing for three days.
I was looking for some info on help to get a small ramp made to help me get my wheelchair in and out of our farm house door and I saw this thing that said "Stumps are Us" and I couldn't pass that up.
I had my surgery in Hamilton Ontario at St Joe's on Jan. 30th and was discharged from there after a rehab intro program on Feb. 21st. I came home to a wheelchair and amp board. After a few falls I finally had my first appointment for my Temporary Prosthesis and was put into the rehab program.
I am a week to discharge and I am terrified. I live out in the middle of no where and I will be alone. Well not alone exactly, I have two dogs that keep me busy and normally I would have my cold frames started and I would be thinking about the up coming year with my greenhouse, but not this year.
This all started nine years ago with a simple surgery to correct an old subtaylor and cuboid fusion of my left foot. My post op cast was put on too tightly and when it was removed my foot and leg from the knee down looked like it was living a different life then the rest of my body. It looked like it had been burnt.
I was diagnosed with something called RSD or now referred to as CRPS type 1. I had never heard of such a thing, but I was in an incredible amount of pain for years. I took copious amount of opiates and finally the neurologist at the pain management clinic in London Ont suggested that I take oral methadone.
I asked for a referral to one of the best orthopaedic surgeons in Canada and he and I came to the conclusion that the best course of treatment for me at this stage was an amputation.
I knew I had made the right decision a few short hours after surgery.
I can sure tell the difference between surgical pain and the pain from RSD. I am still taking some pain medication, but not as much as I was. I have been introduced to Lyrica Pregabalin and it has helped tremendously. I take Hydromorphone four times a day to deal with a nerve that has attached itself to something at the left bottom of my stump. We are working on that with hot/cold treatments and aggressive massage that helps.
Anyway, I am just over eight weeks post op and I figure I am doing fine. One day at a time and I don't believe in that old cliché "No pain, No gain".. If you're having legit pain, do something about it!
Take care everyone and I'll keep you posted..
Cheers from Don in Tara Ontario Canada Brydongrdns@netscape.ca
Don Levesque <Brydongrdns@netscape.ca>
Tara, Ontario Canada - Sunday, April 08, 2007 at 01:02:31 (GMT)
J. Wong-Rolle...
Have your friend make an immediate appointment to see Certified Prosthetist Wayne Koniuk at:
San Francisco Prosthetics
324 Divisadero Street
San Francisco, CA 94117
(415) 861-4146
Wayne Koniuk is Stumps 'R Us certified and recommended Prosthetist because he specializes in A PERFECT FITTING PROSTHETIC DEVICE. Mr Koniuk is my Prosthetist as well.
Good luck!
Dan Sorkin <DanSorkin@comcast.net>
San Francisco, CA USA - Monday, April 02, 2007 at 00:00:46 (GMT)
Hi! I am writing for a friend who had a below the knee amputation. He has had infections, pain on his stump and from his prosthesis. I tried to find resources on the web to help him get a new better fitting or better working prosthesis, but he said he talked to Stumps and the company I found back east isn't a good company. Can you recommend something in the Bay area for him? He has Kaiser, and I know they have a Vallejo facility, but heard it may not be that good. Before the amputation he was very active, and cannot be now-his prosthesis doesn't seem able to help him balance enough, plus it causes him pain. He is the stoic type, and seems to think nothing can be done-but it seems he is taking way too many pain killers, and his weight is up because he cannot be active. He used to hike and backpack and now cannot even walk easily.
I don't know what reasonable expectations are for his situation, but am worried that he is jeopardizing his health because he thinks nothing can be done. Can he get someone to help him get a better prosthesis? I heard his cost about $1500 about 2 years ago-which seems very rudimentary from what I have seen out there.
He has a doctor is SF, but hasn't seen him in a long time, probably since the initial surgery. Thanks
J. Wong-Rolle <wongrolle@hotmail.com>
Vallejo, CA USA - Sunday, April 01, 2007 at 23:58:06 (GMT)
ssnnlee@netzero.net...
Stumps 'R Us Certified Prosthetist Wayne Koniuk suggests that it sounds like a medical, surgical problem and he (or she) should return to his (or her) surgeon for an assessment.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, March 22, 2007 at 10:41:03 (GMT)
Michael Hawkins,
Being an amputee, I can say one of the best things to help was letting me do things on my own. Yes, it is nice to have people do things for you, but as someone who was always looking for ways to help others, it was sometime frustrating for others to step in before I was even able to try.
Offer to ride along to appointments, but if he is able to drive, let him do it if he wants to.
My wife always insisted I take someone to each of my appointments which were about 45 miles away, but sometimes I just wanted to be alone.
Look up resources, such as Amputee Coalition of America, and let him know where to find help for other issues if he needs it.
Rick
Richard Morgan <Richard.Morgan@steelscape.com>
USA - Wednesday, March 21, 2007 at 17:31:15 (GMT)
My son, Michael 26 years old, became a BK amputee yesterday. The doctors are helpful but what can he expect in the next few months, years?
What can we, as his parents do to help without getting in the way of his recovery/rehab?
What questions should we be asking?
We (Michael, family and friends) are all still coming to grips with what has happened and we're glad he's still alive. Any information will be very helpful.
Michael Hawkins <jejoge05@comcast.net>
Tucson, AZ USA - Wednesday, March 21, 2007 at 01:32:47 (GMT)
Carmen Lopez in Atlanta, GA...
Stumps 'R Us Certified Prosthetist Wayne Koniuk suggests a smaller liner size or an antiperspirant or BOTH.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, March 20, 2007 at 05:56:11 (GMT)
I wear my prosthesis about 16 hours per day 7 days a week. I wanted to know is it normal to get air in your liners after wearing your prosthesis for long periods of time?
I seem to be getting air in my liners after just a couple of hours and find that I have to take it off and clean the liner and my stump and then that works for a couple of more hours. But, then here comes the air again.
Is this normal?
How often to you need to replace your liners?
Any information given will be gladly appreciated.
Carmen Lopez <carmenvitalopez@earthlink.net>
USA - Monday, March 19, 2007 at 13:08:48 (GMT)
ssnnlee@netzero.net in Solano County...
You're in luck. DRIVING SPECIALTIES LIMITED who specialize in hand controls for amputees is located at:
215 Commercial Street
Vallejo, CA 94589
(707) 553-1515
Come see us. We have missed you at the Bowling parties. The next one is in July at the Serra Bowl in Daly City, CA.
The next Stumps 'R Us lunch is Saturday March 24th...11:30 AM at Spenger's Fish Grotto..Schmick Room in Berkeley. Details on page ONE of this web site.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, March 14, 2007 at 01:09:02 (GMT)
Hey Dan,
I hope you remember me. I attended one of your bowling get-together. At that time, I lost my right leg. I am now a bilateral amuputee. I live in Solano County.
I hope you can provide me with someone who can convert my car to hand controls.
ssnnlee@netzero.net <ssnnlee@netzero.net>
Solano County, CA USA - Wednesday, March 14, 2007 at 01:01:43 (GMT)
Stumps 'R Us Certified Prosthetist Wayne Koniuk Wins The American Academy Of Orthotics & Prosthetics Annual Award For CLINICAL CREATIVITY!
The Clinical Creativity Award will be given to Wayne A. Koniuk, CP. For the past 25 years he has operated the San Francisco Prosthetic-Orthotic Service. He provides amputees highly functional prostheses and has successfully rehabilitated many athletes and competitors.
Presentation of the Clinical Creativity, Research, Honorary Membership, and Clinical Commitment Awards will take place at the Annual Business Meeting, Friday, March 23 at 7:00 am in Golden Gate C.
The Academy’s 2007 Annual Meeting is being held March 21-24 at the
San Francisco Marriott. For complete program details and to register online, please visit the Academy’s Annual Meeting website at www.academyannualmeeting.org.
To Register:
Call the Academy (703) 836-0788 and we’ll register you over the phone.
Fax your Registration Form to (401) 765-6677.
Register online at www.academyannualmeeting.org.
The Academy Annual Meeting –
An Exceptional Education Experience
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, March 09, 2007 at 14:55:22 (GMT)
I live one day at a time and very much try to make each day count as much as possible. I have been an amputee since 9-6-02. I have been thru many injuries that resulted from the original accident that caused my amputation.
At first I was all up, it's ok I am still alive, it was only my foot not my life. My prosthetists, Mark Maguire(Advanced Prosthetics, Omaha, NE.) has been nothing but a tower of strength for me thru my ordeals. He has come to my home, on Saturday, and brought me a new foot and put it on because he was so excited for me to get a foot that had more response. He met me at the hospital when I broke my hip in 5 places, to remove my prosthetic, so my hip would have the least amount of pain. He sent Jeff, a very knowledgeable young prosthetist, with me to Ohio to be there in the surgery room, in Ohio, when I had the ERTL procedure.
I can't praise him and his crew enough.
My point to all this? Life is not fair some times. Being an amputee is NOT easy.
My body is not like any other amputee in the world. I will never be able to do the things I used to do. I will not be able to work the rest of my life.
Point being, have a positive attitude because sometimes that may be all you have to fall back on. Expect the best but be ready to readjust and except your life the way it has to be.
I was told I expected to much, that's why I would get knocked down every time I would find out I was not going to get any better than this. Love your life every day, make it the best you can have. Don't lose your sense of humor and love for life because of some set backs you never saw coming.
I hope every amputee can get back to their lives and do everything they did before. But those who can't, adjust to your new life and enjoy it.
That's all folks!!!!!!!!!! lol lol
Debbie Coonrod <debc328@msn.com>
Council Bluffs, IA USA - Thursday, March 08, 2007 at 16:50:11 (GMT)
Hi there,
I am looking to see if there are any amputees in the Yuba City, CA area? My brother -in- law just lost his leg (about 6 months ago) from below the knee down and I was hoping to find someone that he has something in common with. He doesn't really know anyone in the area. His name is Chris and he's 22 yrs old. He likes fishing and outdoors stuff, and he needs a woman friend in his life too.
If you know of anyone let me know! Thanks!
ps. i heard of you from someone on the amputee treatment website..a guy said you might be able to help
Ellie
Ellen Millhouse <elliekatem@gmail.com>
Yuba City, CA USA - Wednesday, March 07, 2007 at 14:27:55 (GMT)
Tony Barr was one of the most generous, genuinely dedicated, humorous souls I had ever met. It is with sadness and disbelief that I read his obituary today.
Tony Barr was instrumental in changing so many lives including my own positively. His unwavering advocacy for the ERTL Surgical Procedure helped make so many amputee futures bright and for all practical purposes painless.
Tony was both networking collegue and information source. His "A Survivors Guide For The Recent Amputee" was and is the candle that cursed the darkness for so many.
Tony Barr was one of the few that will be missed by so many.
Sleep peacefully dear friend. You earned the rest.
Tony's Obituary follows
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, March 07, 2007 at 03:48:11 (GMT)
The Amputee Community and Stumps 'R Us lost a great friend today
ANTHONY TALBOT BARR Anthony Talbot Barr, 59, of Boca Raton died peacefully on March 5, 2007.
He was born July 18, 1947, in Chicago, IL. Tony was predeceased by his father, William G. Barr of Joliet, IL; mother, Elinor Talbot Harnett of Ft. Lauderdale; and most recently by his sister, Robin Barr Pellegrino of Boulder City, NV. Surviving Tony are his daughter Lisa (Tim) Russo; granddaughter, Tabitha, grandson, Nick; and great grandson, Timothy all of Troy, NY. He is also survived by his sister, Kathleen (Dave) Barr Kruger, of Lilburn, GA; brother, Michael (Carroll) of Powhatan, VA; and sister, Susan (Jeff) Hellberg of Amarillo, TX. Also surviving Tony are the love of his life and soulmate, Eva Julie Hughes, and his "other mother", Dolores Schneider.
Tony graduated from the University of Tampa with a bachelor of science in 1970 and subsequently started T-Barr, Inc. a commercial real estate company. He was a member of the National Association of Realtors and a longstanding member of the US Polo Association. In addition to his involvement in real estate, Tony's dedication was to The Barr Foundation as both a Board Member and its President, traveling to Third World countries to make people "Whole Again" through The Barr Foundation.
He was a member of the elite group of skydivers who had logged over five hundred jumps, but his passion was polo and his polo ponies.
Friends may call from 2-4 and 6-8 pm on Wednesday, March 7 at Babione Funeral Home (East Chapel), where a funeral service will be held at 7:00 pm.
The family requests that in lieu of flowers, donations be made to The Barr Foundation, 136 NE Olive Way, Boca Raton, FL 33432.
The family and Board of Directors of The Barr Foundation are resolute to continue the work of the Foundation in memory of its founder, William G. Barr, and now its Champion Tony Barr.
Babione Funeral Home is in charge of arrangements, 561-395-8787
To express condolences and/or make donations Visit PalmBeachPost.com/obituaries
Published in The Palm Beach Post on 3/6/2007.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, March 07, 2007 at 03:42:38 (GMT)
Liz Heywood in Spencer, NY...
Once you make the decision it gets better every day.
Congratulations and welcome back to the world of the living. You will never regret what logic & good sense told you what was the right thing to do.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, March 05, 2007 at 22:06:23 (GMT)
Hi Dan & all--
Thought I'd send an update on my situation.
Last Monday, Feb. 26, I became a brand-new AK amp. This was the culmination of my year of research, appointments and arguments with doctors who advised me to fuse my leg straight, and support and advice from wonderful amputees who contacted me after I posted questions here last November.
I had the surgery Monday, came home on Thursday & I'm doing fine.
It feels like I've finally crashed through a wall into a new stage of my life after deterioration from 30 years of walking with the fused/ankylosed knee I developed as a teenager after untreated osteomyelitis.
The friends & contacts I've found here at Stumps have made all the difference. Electing for amputation seemed like a unique trip until I realized how many have already done it and turned their lives around.
I'm still a work in progress but the absence of my leg feels like a space where my new mobility is about to appear. It's exciting!
Liz Heywood
Spencer NY USA
Liz Heywood <lheywood@localnet.com>
Spencer, NY USA - Monday, March 05, 2007 at 22:00:24 (GMT)
Recently, your website was brought to my attention by Burke Thompson of Oregon. I am wondering if you or any of your readers can help me?
I have read from your guest book and noticed that many of your guests are from the west coast, but thought I'd put a request out anyway.
I am 49 years old and in good health, have been an above-the-knee amputee for 16 years; my weight is appropriate for my height and build, and does not fluctuate. I have a long residual limb, and good insurance, and the motivation and tenacity to get a leg (i.e., I have a lot going for me!) Two years ago I had an ERTL procedure with good results. Since then, I have gone through two prosthetists both of whom I worked with for approximately one year. I am in Maine and both of these prosthetists are in New York. I decided to travel there because of the larger population of people/amputees/prosthetists with experience fitting above-the-knee amputees.
In these clinics I have met some people that have been fit well, others that haven't been; unfortunately, I fall into the latter category.
I have devoted at least every other week to traveling to New York to make myself available for fittings, etc. The second prosthetist got me up and walking and billed my insurance. With the increased walking, I gained muscle in my upper thigh and at that point needed more adjustments, had them done, but from that point the leg started hurting. At each fitting the leg fit became progressively worse than the last and deteriorated to the point that I am no longer wearing the leg because it hurts too much to wear. (Shock pains to the residual limb which I hadn't experienced since before my ERTL procedure.
I decided that I cannot tolerate this type of torture.) I am worn out from the travel (a six- to seven-hour drive each way), and my prosthetist has lost interest and time as he only works two to three days per week.
What I am looking for in a new prosthetist is:
1.) One who is located within a two-hour drive of Portland, Maine: Could be Boston, New Hampshire, etc.
2.) Qualities: Passionate about what he/she is doing Compassionate. Has fit many above-the-knee amputees and able to maintain the fit.
3.) Personality: Must be Kind, Respectful, Good listener, Good comprehension
Any help/tips/recommendations that anyone can give me would be greatly appreciated!!
Sincerely,
Meg Wolff
Author of Becoming Whole, The Story of My Complete Recovery from Breast Cancer
www.megwolff.com
www.macrobreastcancersurvivors.com
Meg Wolff <megwolff7@aol.com>
ME USA - Friday, February 23, 2007 at 15:02:08 (GMT)
Dear Holly
Contact Tony Barr at the Barr Foundation in Boca Raon, Florida t-barr@t-barr.com He may be able to help.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, February 21, 2007 at 19:40:54 (GMT)
I just found your website and I am grasping at straws here. I have a 22 year old stepson who served in Iraq during the "first wave". When he returned he and his buddies all bought dirt bikes. He had an accident on the dirt bike while still in the military three years ago.
He had his foot rebuilt at a military facility.
About a month ago, an infection ran through the foot and there was no choice but to amputate it below the knee.
Unfortunately, he was a mechanic intern at a dealership and his insurance does not kick in until March 1, 2007.
The military "lost" his paperwork and due to some other issues they may not consider themselves financially responsible. He does have a military attorney, but it could be years before he knows anything about his "case".
He now has 30,000 dollars in medical bills in Idaho Falls. We are following up with the hospital's aid reccomendations but those are not looking good as well. In 6 months he is going to need a lot of cash for his prosthetic leg.
I guess I am wondering if there is an agency anywhere that provides any type of aid for individuals who need help purchasing a prosthetic?
I appreciate your time and efforts so much. Your website is very informative. I myself wrecked my Harley five years ago, luckily I was not injured. I consider myself very lucky.
Thanks so much. God bless you for helping others
Holly
Holly Gederos <hgederos@mt.gov>
USA - Wednesday, February 21, 2007 at 19:38:26 (GMT)
Jeanne Morris...
He may be nice. He may be an amputee BUT your Certified Prosthetist sounds like an incompetant moron.
Find another CERTIFIED PROSTHETIST in your area and have him (or her) fit your socket properly.
There is no reason why after this much time you are not walking properly and WITHOUT PAIN!
In what city in the USA are you? Perhaps I can suggest a proper vendor.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, February 19, 2007 at 05:22:50 (GMT)
I'm Jeanne morris and I can't figure out why my prosthetist can't make my leg comfortable to walk in? He is an amputee. I trust him. But the end of my stump is so sensitive and I get such pain walking.
I'm only 47. I want to be active. Anybody have any Ideas?
This is my third leg.
Thanks
Jeanne
Jeanne Morris <jamiejeanne@sbcglobal.net>
USA - Monday, February 19, 2007 at 05:16:33 (GMT)
I haven't posted for a while but have some [personal] good news to share.
I have suffered with constant pain, occassionally chronic, since a road traffic accident in 1981 left me with a paralysed arm [brachial plexus lesion] and elected LAE amputation in 1991.
In the intervening 25 years I have attended various pain clinics and tried various pain treatments from TNS device to copious amounts of whisky. I attended a pain clinic in November 2006 and was seen by a Mr Thorpe, Anaesthetist and Pain Management Consultant who prescribed a mixture of Amatryptil [mild antidepressant] and Pregabalin [neuopathic pain suppresant].
I've been using it ever since...
The occassional shooting pains still occur though less frequently but the constant background pain and frequent thumps are on the wane - it's amazing! I used to suffer very badly during the night - every time I turned over it would cause a massive bout of unbearable pain - not any more, and the drugs have a side effect of helping me sleep significantly better than I have in the past 25 years.
The Anaesthetist told me that only 2% of people who suffer constant pain following "neurological trauma" will suffer with it for as long as I have.... I guess that makes me special :O)
If anybody wants to know the doses please contact me and I'll be happy to share them.
Regards, Barry
Barry Procter
Henfield, Brighton, UK
email: barry.procter@uk.ibm.com
Barry Procter <barry.procter@uk.ibm.com>
Henfield, Brighton United Kingdom - Thursday, February 15, 2007 at 21:13:47 (GMT)
Ron,
I have had a walking boot since day one of the infection. It did not help at all until I could walk without it. Now, I can walk in the boot with less pain, but it still hurts pretty bad. When I first get up from sitting for awhile it really hurts (almost fall down from pain) with or without the boot. It hurts due to weight bearing and motion.
As far as fusion goes....
1. If it takes away the pain seems like a big if.
2. If the infection does not come back seems like a big if (from the original accident the bone is not smooth and straight, but has lots of irregulairities and hidey-holes for infection).
3. If it can be useable again is iffy (I have pretty high standards and expectations for usefulness--above all I want something that works reliably without limitations). 4. If this thing is going to plague from here on to heaven and is going to result in bka anyway, then I would rather just get on with life.
Another question? Since I have already been laid up for 4 months with this thing and now working in extreme pain, what can I expect for healing time with bka and Ertl?
I am healthy, in shape, not overweight and have a "git 'er done" attitude. Is it possible to walk out of the hospital after surgery?
My understanding is that I will be fitted with a prosthetic while I am still under anesthesia.
By the way, this won't be the first time I have given up a body part for life, libery, and the pursuit of happiness. Four and a half years ago I had a colonectomy with "J" pouch performed due to Chronic Ulcerative Colitis, and I couldn't be happier with the result.
The info and advice has been invaluable. Thanks,
Jim in NV
Jim Stockman <jimestockman@yahoo.com>
USA - Friday, February 09, 2007 at 11:40:37 (GMT)
Jim (in NV)
Like Dan, I have had the Ertl Procedure and have been quite happy with it. However, each person must make the decision themself, with proper information leading up to the decision.
(You can read my story on the ErtlReconstruction.com website if you like)
My ankle man told me that when I was in my cam-walker (walking boot), if I still had the pain, a fusion most likely wouldn't help. The fusion is to 'lock the ankle in place". The cam-walker is designed to do the same thing. So, if in the boot I had tons of pain, he didn't see that fusion would really help me.
(of course, this was told to me after a fusion surgery, and we were discussing another fusion, since I was 'breaking down' the current fusion.
Have you completely immobilized your ankle and seen if that removes/reduces the pain? If not, take a few days/weeks to test that out. At least you will have the knowledge you tried and found out the the fusion really isn't an option.
This is coming from the webmaster of ErtlRecosntruction.com. While I am obviously a HUGE advocate of the procedure, all options should be investigated before taking that final step (no pun intended)
Ron King
Ron King <ron.king@gmail.com>
USA - Thursday, February 08, 2007 at 16:16:45 (GMT)
Jim in Elko, Nevada...
In my opinion you should have a below the knee amputation using the ERTL Surgical Procedure. The ERTL Procedure is described with a link to the ERTL website on page one of the Stumps 'R Us web site www.stumps.org I recommend the ERTL because it is the only one I know of that creates a bone bridge at the stump end for strength and buries the nerves in soft tissue that eliminates or greatly reduces any post op pain.
Good luck!
It was more than 30 years ago that I had the same decision to make. I never regretted it...NEVER.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, February 07, 2007 at 04:57:06 (GMT)
Dan and others,
My name is Jim Stockman and live in Elko, NV. I fell of a 38' cliff on 7/1/97 and shattered my lower leg/ankle. It is was nearly amputated then but they were able to reconstruct it over the course of three surgeries.
I had constant, though dull, pain and nearly debilitating pain off and on until 10/04 when I had half the hardware removed (the other half was buried under bone).
What a difference! No pain to speak of since then until a root canal w/out antibiotics and developed a staph infection 10/06. Surgery to clear up the infection and remove rest of hardware, but now have SEVERE pain when walking and aching at rest. I was off work for 3 and a half months because I couldn't walk (work as a heavy equipment mechanic) and now back at work but can barely walk.
Specialist says ankle fusion or bka is the answer, but recommends fusion. First accident I had compartment syndrome resulting in nerve damage, circulatory damage, and skin graft. My foot is not perfect, but maybe good. Toes do not work well.
My question: What (in your opinion) will give me back my quality of life, activity level, and as pain free as possible? I ride dirt bikes, play sports, and chase my young kids and lovely wife, as well as have an active, on feet all day job. What would you choose? I have always leaned toward bka ever since the accident because I was so limited with my messed up leg. I am very interested to get your point of view (people without problems seem to think keeping the leg at all cost is the best).
Thanks for your site and the info available.
Jim in NV
Jim Stockman <jimestockman@yahoo.com>
Elko, NV USA - Wednesday, February 07, 2007 at 04:54:46 (GMT)
Hi,
I would just like to pass on a link to a wonderful Austalian company making stump socks that are orderable over the net and shipped worldwide
I know many amputees find it hard to find a source of quality socks at reasonable prices.
Love your site, keep up the excellent work and know we all appreciate it.
http://www.hellersocks.com/index.html
Barry Porter,
Bathurst, NSW,
Australia.
pondo666@internode.on.net
Barry Porter <pondo666@internode.on.net >
Bathurst, NSW, Australia - Friday, February 02, 2007 at 16:48:39 (GMT)
I saw my doctor today and she seems to think it was (the bump burst the other day like a big pimple) a Baker's Cyst .
Nothing to worry much about.
I may have torn some cartilage or something during my accident that was not diagnosed.
Robert Webster <Robert.J.Webster@navy.mil>
USA - Wednesday, January 31, 2007 at 20:52:34 (GMT)
Rob Webster...
Possibly pimple, ingrown hair or onset of blister check the liner you are using .....
Does the crease in the liner at the backside of the knee where it bends match up to the bump on the skin????? If so you might want to take steps in keeping it cleaner exfoliated and a bit dryer i.e. less sweat and possibly out of the leg for a few days.
Have a good one. Ride safe
"Two Tires Downside"
Joe Kennedy
RBKA (Rider)
Joe Kennedy <joseph.kennedy72@verizon.net>
FL USA - Monday, January 29, 2007 at 16:30:54 (GMT)
Your question was a new one for me. I don't have an answer.
I would suggest you ask your Certified Prosthetist if the socket fit might have something to do with the above socket swelling. Other than that your Doctor should have an idea and hopefully a solution.
Thank you for responding positively to others in our GUESTBOOK.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, January 26, 2007 at 14:04:58 (GMT)
I am a 36 year old L/BK due to a motorcycle accident 18 months ago. Doing well overall and am even back on the motorcycle after we (the bike and I) got fixed.
It actually took the bike a while longer to get fixed/modified.
Anyway, my question is this;
I like my socket and Renegade foot however I have felt a bump forming behind my left knee a little above the socket. I can only really feel it when my leg is straight. It doesn’t hurt but it can be uncomfortable at times. It is larger now than it was a few months ago.
I am going to be seeing my doctor next week and was wondering if you had any ideas about it?
Thanks for the great web-site by the way. I have contacted many people on it and hope to help others as well.
Riding on,
Rob
HDRider
Rob Webster <robwebster@comcast.net>
USA - Friday, January 26, 2007 at 13:56:38 (GMT)
Hi,
I need to call someone who can convert the braking system on my motorhome.
I do not want hand brakes. I am looking for someone who can realign the brake to the left side of the steering column.
Do you know anyone who can do that?
Thanks for your help.
Frank Billeci <fuzyfrank@aol.com>
USA - Tuesday, January 16, 2007 at 02:22:16 (GMT)
Roberto Donati in Los Angeles, CA...
The best place to inquire would be through the
ACA (the Amputee Coalition of America). You can scan their Web site at:
http://www.amputee-coalition.org
Or E-mail them directly at:
editor@amputee-coalition.org
Or call them TOLL FREE at:
(888) 267-5669
The ACA has the largest data base of Amputee Support Groups in the USA that I know of.
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, January 16, 2007 at 00:42:23 (GMT)
Dear Mr. Sorkin,
I found your website thru Google.
I am a marraige and family therapist in Los Angeles and have a few patients that have lost fingers, hands, arms etc. I am having a difficult time finding a support group for them in the LA area. I was wondering if you knew of a website or links or phone numbers I could call, that would guide me and my clients in the right direction.
Thank you so much.
Roberto Donati M.A. MFT <robertodonati@gmail.com>
Los Angeles, CA USA - Tuesday, January 16, 2007 at 00:36:48 (GMT)
Hi! My name is Fran and I am a 44 year old bilateral bk amputee(second amputation just happened this past December) and a single mom of a beautiful five year old daughter named Sadie. We live in Lynnwood, Washington in the basement apartment of my sister and brother-in law's house. When I lost my first leg, the recovery time for me was a snap! I was back at work 2 weeks after my surgery and walking upright in 5 weeks.
I don't remember being depressed or sad or frustrated back then. This time around feels very different to me, maybe it's because I have now lost both my legs, and you know; once they are gone, they are really and truly gone. I am depressed and sad and very frustrated but mostly scared. It's the waiting that is making me crazy, waiting for my limb to heal so I can start the process for a new prosthesis, the hours seem like days, and the days seem like weeks. Being stuck in this wheelchair doesn't help much either; can't drive yet, can't pull up my pants after using the bathroom without transferring from my chair to my bed to do it. I know all of this is transient but the waiting is crazy making. And then, Sanjay(my prosthetist) calls me to tell me this:
My insurance company (AETNA) has decided in all of their infinite wisdom to deny my evac pump system on my right leg because they deem it experimental/investigational. The frustration for me is immense because they covered my first vacuum pump prosthesis back in 2005 so why now are they saying the pump system is experimental, and to top it off, MEDICARE does cover the vacuum pump systems, the particular device I have(EVAC) has it's very own code with Medicare and they do consider it a covered device. It is beyond me why insurance companies play god. I mean the letter they sent my prosthetist was ridiculous: "This is your final appeal, do not write to us again regarding this, blah, blah, blah!!!!!" I despise insurance companies, and right now I am paying a fortune for my COBRA premium and realize that it is costing me and the agency I work for a fortune for health insurance and each year they cut more and more and decrease benefits but raise the premiums, AGHHH!!!!
Technically my prosthetist cannot hold me responsible given their contract, etc but now they are out over 5 grand and now with this second amputation I am need of yet another prosthesis and the vacuum pump has been the best set up for me. It has allowed me to raise my daughter, continue living the life I was accustomed to prior to amputation, etc and I am at a loss as to what to do from this point on...
So; I ran across this site while searching for help online and thought this might be a good place to begin...
I am wondering if there are other folks who have had similar problems with their insurance companies and if so would you be willing to share your experiences with me and maybe impart some of your wisdom in my direction. It's wrong of AETNA to do this, and they need to be stopped somehow!!!!
Thanks so much for listening. It has been a rough couple of months and now with this news, it only adds to my depression and anxiety.
Peace Always,
Fran Olla-McCabe
19430 70th Place W.
Lynnwood, Washington USA
F.OllaMcCabe@hotmail.com
fran olla-mccabe <f.ollamccabe@hotmail.com>
Lynnwood, WA USA - Monday, January 15, 2007 at 08:53:13 (GMT)
Nikki Thompson in Snohomish, WA...
The first place I would try to borrow used or new prosthetic devices would be from your local Certified Prosthetist (check the yellow pages for Prosthetic devices OR Certified Prosthetist).
Next I would contact the Otto Bock Company (www.ottobock.com) and state your case.
You have a WONDERFUL idea for an 8 minute descriptive presentation.
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, January 12, 2007 at 03:33:55 (GMT)
I am a student at Snohomish High School. I am preparing to compete at the Washington District and State Debate Finals giving an expository speech.
Expository is a competitive speech event in which students give an eight minute explanation of a topic they feel is important.
I am giving my speech on the history and future of prosthetics and am in need of some visual aids. The Stumps 'R Us site intrigued me and I think you may be just the person who might know where I could find some prosthetic devices to enhance my speech.
They could be old or broken as long as they are representative of function they are supposed to perform.
I would really appreciate your help in finding these treasures.
Thank you!
Nikki Thompson <u-r-enchanted@comcast.net>
Snohomish, WA USA - Friday, January 12, 2007 at 03:27:21 (GMT)
Next week on January 18th, I will truly CELEBRATE the six month milestone of my Ertl Recon surgery. (I had the surgery at the Oklahoma University Medical Center with Dr. William Ertl.)
I will try to update what has happened at a later time, and give you a synopsis that may be on the Ertl website/patient testimonial.
I did finally get into a definitive prosthesis on Dec 11th (I went through two check sockets--from Sept 21 to Dec 11th) and have had some challenges with pain, but the last week, things have been improving. I did go back to work on Sept 12 full time while still on crutches, and have been working full time since then.
I'm not "jumping off jeeps" yet (from the Navy SEALS video), but can stand on my prosthesis--full weight bearing with little pain. I truly believe I am where I "need to be" at this time!
Thanks for everything you have done to promote the Ertl procedure.
Dave Paschold
402-423-0308 office
402-239-6947 cellular
dlpaschold@agriliance.com
Paschold, Dave <dlpaschold@agriliance.com>
USA - Thursday, January 11, 2007 at 14:30:02 (GMT)
It has been a long time since I have visited the site, but, I am back.
I recently had a new socket made and after 6 years of the pin locking system I was talked into trying the Tech Harmony system.
Well, I tried the tech model, and one from genesis, then my leg guy mentioned there was a model out that ran by battery that really kept the leg on even when sitting for long periods of time. Whenever the vacuum gets low, the pump sucks the air out.
So far I am a happy camper.
It has been around 4 months and I am still happy. Actually kind of even jogged a bit, something I could not do before. I usually go from 5:30 AM to 6:30 PM daily at work and do not take my leg off to adjust at until I get home from work.
I no longer never have to stop, and readjust because the leg has slipped during the day from all the walking I do. That is great considering I am plant manager who walks the production floor all day. I used to have to stop at least once every 3 hrs...now, nothing.
Also so far no big deal in heat either as I was in Vegas and Florida within the past 4 weeks. I can go on and on, but won't. Need to get to work.
If anyone has any questions, ask away, either private (joebach3@hotmail.com) or on this forum.
JJ Bach <jjbach@aol.com >
USA - Wednesday, January 10, 2007 at 17:22:05 (GMT)
Hello,
My name is Tina Wolfgram. My Dad Timothy Canfield just recentely got his left arm amputated and is having severe phqntom pain. He has no desire to eat and is losing a lot of weight.
Is there someone out there that my dad can talk to that has gone thru the phantom pain and can give him some helpful things he can do to releve all the pain my dad is in 24-7
Thank you to all who may reply with much needed help.
tina wolfgram <tchump333@peoplepc.com >
USA - Monday, January 08, 2007 at 20:53:15 (GMT)
Kevin O'Reilly...
I'm not sure what kind of prosthetic you have but but if you are ripping thru pants I would assume you either have the lock and pin system or the knee strap.
One suggestion is this. I have a suspension type prosthesis and use the Otto Boch sleeves. In these sleeves they send what is called a gaiter which is suposed to prolong the use and wear and tear of the sleeve by covering it with a band. I don't use them as they are a pain in the ass to use but if you could somehow cut an old stump sock or an old sleeve or even your wife's old nylon to go over the area that's rubbing it should prolong the pant wear and tear and rubbing in that area.
Suit pants are especially prone for damage.
I hope this helps.
Joe Kennedy <joseph.kennedy72@verizon.net>
Lutz, FL USA - Sunday, January 07, 2007 at 14:32:40 (GMT)
Randy,
Contact Tony Barr of the Barr Foundation in Boca Raton, FL. He & I would both recommend the ERTL Procedure for you because it is the ONLY surgical procedure that properly prepares the residual limb for a comfortable, mostly pain free prosthetic device.
Tony's amputation is exactly what yours will be.
Tony's Email address is t-barr@t-barr.com
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, January 03, 2007 at 19:15:46 (GMT)
My doctor just told me I should consider a reconstructive amputation of my ankle/lower leg.
Shocking news. I would like to gather all info, so I wanted to talk to someone who has gone before me! Do you have a refferal I might talk to?
Thank you.
Randy Ziraldo <rziraldo@yahoo.com>
USA - Wednesday, January 03, 2007 at 19:12:10 (GMT)
I need some help from the Stumps 'R Us.
A brief intro. My name is Sal Becker and I am 50 yr old bilateral ak of 3 yrs. (Damn almost sounds like I am in AA).
Due to fighting MRSA for a year and half I am just now getting to the prosthetics. Just got into basic knees, up to about 200 feet at a shot without assuming the confessional position.
The help I need is that I want the computerized knees.
Yes 2, one for each leg.
Of course the Insurance company denied them as being investigational and experimental. As far as a bilateral AK using them, unfortunately there is little to dispute this.
So our plan of attack is to prove that bc/bs has paid for the knee in the past either uni or bilateral. With enough examples there, with there being a L number under Medicare (medicare doesn't pay for or assign codes to experimental or investigational equipment) and with what is being done at Walter Reed Hospital using the c-leg for both unilateral and bilateral amps, we think we can beat the denial.
So anyone who has had bc/bs (blue cross/blue shield) pay for their computerized knee, if you could please contact me and allow us to use you as an example, it would be really great. If you had Empire bc/bs pay it would even be better.
At the end of the run, successful or not, all information obtained will be posted to a website for public use and hopefully make it easier for the next person.
Thank you.
God Bless and Happy New Year to all.
Sal Becker <salbecker@cox.net>
Phoenix, AZ USA - Tuesday, January 02, 2007 at 19:45:57 (GMT)
My daughter would like to circulate her newsletter for Young Amputees and your Stumps 'R Us readers.
If you would like to receive “Young Amputees in Action” (it is a PDF file in color)Email me at:
jmjotters6@yahoo.com
You can write or call at:
2437 Baker Rd.
Modesto, CA 95358
(209) 572-5136
Thank you!
Mary-Lynn Ott <jmjfarmgirl@clearwire.net>
Modesto, CA USA - Tuesday, January 02, 2007 at 01:11:48 (GMT)
Kevin...wherever you are,
To avoid the worn pants problem I wear sweats most of the time. The only time I wear conventional trousers would be to attend a formal occasion.
In the spring and summer I wear shorts.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, December 19, 2006 at 14:35:05 (GMT)
I am a BK and have a question. I am tired of replacing pants because the edge of the prosthesis is rubbing against the knee of pants causing holes in the knee portion of pants. Does anyone have any info on how to correct this?
Love your site...keep up the good work!
Kevin O'Reilly <kevino@iglou.com>
USA - Tuesday, December 19, 2006 at 14:28:01 (GMT)
Lisa White in Perth, Australia
Don Scheiman in Sunnyvale, CA USA can solve your exercise problem...easily. Contact him at:
dscheima@sbcglobal.net
Don works with upper arm amputees and bi-lateral amputees with extraordinary success.
What he will do is to coach you through his exercise methods using easily affordable devices you can use at home.
I just got off the phone with Don explaining your problem so he is expecting your Email.
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, December 17, 2006 at 20:01:42 (GMT)
Hi,
I am a 31 year old bilateral above knee amputee, for the last 7 years. I am absolutely lazy when it comes to exercise, and have a sit-down full time job.
I have gained nearly 8kg in weight since losing my legs, and I haven't even attempted pregnancy yet!!
Walking was my favourite exercise and I really miss it.
I am seeking advice from other non-exercise amputees as to what physical activity ideas helped for them. I found any exercise with my legs on to be unreliable, as I have very problematic stumps and tend to rely on them to get me through the working day - so my spare time is in the wheelchair.
Swimming seems to work, but finding the time doesn't. Some say swimming before work, not after...but I find my stumps are too fragile (skin grafts) to handle my legs being put straight on afterwards.
Help!
Smugly married and getting plumper by the year....
Lisa E. White <lisaw129@yahoo.com.au>
Perth, Auistralia - Sunday, December 17, 2006 at 15:39:07 (GMT)
My name is Stephen Reynolds and I just came across the Stumps' website.
I'm a new LBK.
I wish I had found your site sooner; it's better than the ones I've been on previously.
Thanks for your time.
By the way, if anyone needs a good prosthetist up here, south of Seattle, just let me know. I found a great one that REALLY listens & REALLY cares.
Best Regards,
Stephen Reynolds
LBKA 9/06
Stephen Reynolds <gracedandforgiven@yahoo.com>
Federal Way, WA USA - Sunday, December 17, 2006 at 01:04:09 (GMT)
Hello,
Please allow me to introduce myself. I am an above knee amputee from Vancouver Canada. I lost my left leg as a result of a motorcycle accident in 1974.
As a former paralymic swimmer and skier, I created an amputee resource website at www.amputee.ca. My website is included in the Amputee Coalition Links of Interest Section here:
http://www.amputee-coalition.org/links/nllic_links.asp?companytype=General%20Information
My website is also featured at the following international sites of interest to amputees:
http://talbronstein.org/archive/2004_12_larry_gardner.htm
http://www.amputee-online.com/ampucast/gardner/larry_gardner.html
http://www.ossur.com/template110.asp?PageID=255&newsid=865&Tpl=0
I have experienced phantom pain for many years, and I have written an article on the use of Farabloc for treatment of my pain, which has been overwhelming at times. Here are links to the articles:
http://www.amputee.ca/PhantomPainMain.htm
http://rehabilitation.medicalengineer.co.uk/Dealing+with+Amputee+Phantom+Pain.php?page=1
My experience with Farabloc has been very positive. Please let me know if any of you have had and experience with Farabloc for amputee phantom pain relief.
You can visit the Farabloc website at www.farabloc.com. Farabloc has been the subject of many years of pain research and is proven effective at relieving phantom pain. You can view the studies at their website.
I hope the Farabloc limb covers can help others like it has helped me.
Please let me know if you have any questions about Farabloc. I hope to hear from you.
Regards,
Larry
Larry Gardner <larry@mrwebsite.ca>
Vancouver, Canada - Sunday, December 17, 2006 at 00:52:04 (GMT)
Dear fellow amputees,
I am a double bk amputee living in Rochester, NY. I have been a member of the US Disabled Sailing Team since 1998. I had the good fortune of representing the USA in the Sydney 2000 Paralympic games. I am currently sailing with my friend David Schroeder in Miami, FL. David is an English professor at Miami Dade College, a C 5-6 quadriplegic, a former national and world record holder in wheelchair track and marathon, and member of the US Disabled Sailing Team five times.
We are looking for an athletic, lower extremity amputee, that would like to tryout for a team
position in our Paralympic sailing campaign to represent the USA in Beijing, China in 2008.
If you are (or know of) an athlete that is either a single bk amputee, double bk amputee, or single ak amputee; who accepts their disability, and wants to compete at a world class level, enjoys being on the water, and is willing and able to undergo intensive training in Miami, we are interested to talking with you.
If you are the person I've described above... please contact me.
Keith M. Burhans, Rochester, NY USA KMBNOFEET@aol.com
Want verification? GOOGLE Keith Burhans Sailing
Keith M. Burhans <KMBNOFEET@aol.com>
Rochester, NY USA - Tuesday, December 12, 2006 at 03:44:31 (GMT)
My daughter Ella is almost 3. Ella was born with fibular hemi melia and her R foot was amputated when she was 9 months old.
She wears a prosthetic and does very well.
I gave her a hockey stick and a plastic golf ball to play with. She is swinging both L and R but seems to be more accurate swinging L. She is R handed.
So does that mean she will be Dominant R footed (her prosthetic leg) or L dominant?
If anyone knows the question to this answer please contact me.
Thank you for your time.
I got her R handed golf clubs for Christmas wouldn't you know. Didn't think about that!
Sue Rodriguez <suezrod@msn.com>
USA - Tuesday, December 05, 2006 at 17:57:39 (GMT)
Hello, everyone!
Well, I fly off to Oklahoma City for my ERTL surgery tomorrow. I just want to let you know how much I've appreciated your support and kindness. I feel really positive about this surgery and strongly feel that this is my best option for the best possible outcome.
I'll have appointments with the doctor and at the hospital on Wednesday (12/6), then will have the surgery first thing in the morning on Thursday. I'll be in the the hospital 3-5 days, then in the hotel to recuperate before my return on the 14th.
If you're interested in learning about the surgery you can go to www.ertlreconstruction.com. If you click on the "Ertl Pages" tab and then on "Ertl Amputees", you'll be able to read about several people who have had the procedure.
Again, thanks for all of the support - it's meant so much to me.
Sincerely,
Tanya
Tanya McCabe <dangergirltm@hotmail.com>
Portland, OR USA - Tuesday, December 05, 2006 at 13:42:16 (GMT)
Am I glad I found you!
My name is Fred Schmerling, an 80 year old above-the-knee amputee. I live in Wyckoff, NJ and belong to the Amputee Support Group at Kessler Institute in Saddle Brook, NJ.
It's been about 2 years since I've been without my left leg. I was operated on for a simple knee replacement and developed a Staph infection in the hospital which could not be gotten rid of.
The end result was amputation.
I'm living at home with my wonderful wife who takes real good care of me.
I was a commercial artist all my life and now I've fallen in love with computers and love what they can do.
With my digital camera, I make greeting cards for friends to show I'm feeling good and I surprized myself with all the terrific ideas I came up with.
Hoping to hear from you...If anyone is interested I can send tham copies of my work.
Fred Schmerling <Uglysoto@aol.com >
Wyckoff, NJ USA - Tuesday, November 28, 2006 at 22:06:27 (GMT)
Sadieei Brown...
First off you are not a cripple in anybody's eyes. Each and everyone of us amputees whether we were born with it or had to have it done have gotten on with our lives. So in saying you are just physically handicapped in some slight way.
To me a cripple is a person that has to have 24/7 care and is unable to help him or her self.
I am a bilaterial BKA (below the knee amputee). I lost them in 2002, and I am back doing about 95% of what I was doing before I lost them.
Jack Pickerd <sparksjwp60@cox.net>
Jacksonville, TX USA - Friday, November 24, 2006 at 16:26:54 (GMT)
Jess in Saskatoon, Saskatchewan, Canada...
Thank you and a Happy Thanksgiving to you and yours.
Us cheerful cripples have to do what we can to pass on the knowledge that what has happened to us is just not that big a deal.
I take a lot of my inspiration from Stumps 'R Us Athletic Director Alan Fisk. Alan is a QUADRUPLE Amputee...no arms...no legs...yet a more cheerful, optimistic young man you would be hard pressed to find anywhere.
Alan is a Career Counselor at San Francisco State University where he inspires others every day.
It just occured to me that Thanksgiving is not one of your Canadian holidays. I stand corrected.
Merry Christmas & a Jolly New Year!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, November 24, 2006 at 16:02:06 (GMT)
Hiya Dan,
I stumble upon your site every now and then and I figured I'd let you know that your sense of humor always makes me chuckle.
I'll blow a little of that sunshine now to reaffirm to you that you're doing a wonderful thing here with Stumps R Us. I'm another one of those two wheeled statistics, RBK back in 1999, and life is great.
Keep it up Dan!
Jess <mini-mojo@hotmail.com>
Saskatoon, Saskatchewan, Canada - Friday, November 24, 2006 at 15:50:58 (GMT)
i just came across stumps R Us .. was hoping you would post this for me
I am a born cripple, upper body, BE left arm .. if thats the correct term. if not .. i have a left arm shoulder to wrist .. no hand ...see i don t hang with the medicals, but am trying to find out if there is a name for this state of affairs .. dont get me wrong i have little to no issues with my crip stauts in my world, on my terms but i am trying to find it for a reason ... i was born in the late 1960s, its not thalidomide ..
if you want to know more ask away ... i seem to recall it started with M ... but i know nothing else ...
Sadieei Brown <sadieeib@hotmail.com>
London, England - Wednesday, November 22, 2006 at 22:32:35 (GMT)
I became a right aka in may 05 after two years of pain, hobbling about on a crushed leg from a drunk driver turning in front of my motorcycle.
Anyway, the internet is new to me and I,m browsing for sites about amputee,s, and this one seem,s interesting. So maybe I can make some new friends and get some information from experienced aka,s.
Thanks
Steven Pennington <scottp@webound.com>
Conway, MO USA - Tuesday, November 14, 2006 at 15:59:43 (GMT)
This Guestbook is a lifeline for me. I'm a 45 year old divorced mother of 2, and I'm moving towards an elective AK amputation for the same reason I've heard over and over here: to get on with my life. I live in a small town in upstate New York south of Ithaca.
Thirty-one years ago I developed chronic osteomyelitis, and because of my parents' religion (Christian Science) I had no medical treatment. I spent ten months without getting out of bed while the infection spread and drained from my shin to mid-thigh. My knee joint was destroyed and eventually fused itself. After six months in a wheelchair and eighteen months on crutches I was able to walk on my leg which fused at about eighty degrees. More importantly I was able to ride my horses, and this was what got me through years of depression & PTSD.
After twenty years I broke free from my religious mindset and saw a specialist about my knee. In the meantime I'd been extremely active training horses, riding at a racetrack and working on a dairy farm. The doctor said all that could be done was to fuse my leg straight. That was a no-brainer for me--I already HAD a fused leg and I was strong & busy so I put the question on hold. This was in 1995.
Well, this year my body fell apart--my "good" knee is arthritic, my left ankle very deteriorated and painful and I've lost a lot of strength and flexibility. I can barely walk and can't stand still at all. The orthopedic head at Buffalo General's teaching hospital said my fused (ankylosed) knee is exceptionally rare and difficult and can't be replaced. (He gave the operation a 5% chance of a good outcome, 30% chance of a fair outcome.) He advised me (like two other doctors I saw) to have my leg fused straight & eventually fuse the ankle as well.
I've been researching AK amputation and talking to a prosthetist to get all the information I can. My hope is that amputation would give me the chance to continue to ride, walk, and x-c ski and maybe even start bicycling again. It seems to me the doctors project their own fear of losing a limb & want to save my leg at all costs. I realize saving limbs is their business, but I've HAD a fused leg for 30 years (in a bent position no doctor in his right mind would have approved) and it has not been easy and now it's wrecking my body.
I have an upcoming appointment with a vascular surgeon (in January) to see if he'll do the surgery. Have any of you folks had to lobby this hard for amputation? Are doctors really this ignorant of the positive potential? It's a weird position to find myself in--I feel as though I'm chewing off my leg to get out of a trap. The more I educate myself about amputation, the more calm and relief I feel, and I know my decision is mostly made already. My kids & friends are very supportive but it's hard arguing my case with doctors! I just want to end the pain and be able to MOVE.
Anyone with thoughts on this, please respond! Thanks so much for being there to hear me.
Dan--this is a great site you have.
"Life is either a daring adventure or nothing at all. Security is mostly a superstition. It does not exist in nature."--Helen Keller
Liz Heywood <lheywood@localnet.com>
Spencer, NY USA - Thursday, November 09, 2006 at 23:37:27 (GMT)
Dennis Brown in Stone Mountain, GA
The BB-5500 Bidet Has The Touch Pad Control Module you are looking for
http://sanicare.com/bb-500.html
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, November 09, 2006 at 00:22:06 (GMT)
Dear Fern,
5'4" and 115 lbs is a small person and the Harmony by Otto Bock would be so heavy it would feel like an anchor. I have been told the active vacuum is so great that people do not complain about the weight.
I do not really believe that.
I get the same result with a expulsion valve allowing the natural piston in the socket act to expel air until the pressure is equalized and all motion is gone.
Wayne Koniuk, C.P. <limbart@sbcglobal.net>
San Francisco, CA USA - Wednesday, November 08, 2006 at 14:34:41 (GMT)
Researchers at the University of Toronto and around the world want to know about your experiences with upper limb absence. This anonymous survey will ask about your lifestyle and experiences with limb absence, your healthcare experiences, and your views on upper limb prostheses. By filling it out, you will help us understand what you want (or don't want) in your future healthcare and/or prostheses. You will contribute to important research and have the chance to share your experiences and opinions. Plus, you could win a great prize valued at $250!
If you have already completed our survey, thank you for your time and participation! If you would like to complete the survey, it can be found online at:
http://www.prismlab.org/survey.htm
The survey takes about 20 to 30 minutes to complete and is available in English, Spanish, French and Dutch. We would love to hear from you and will be sure to communicate the opinions expressed to healthcare providers, prosthesis designers and of course, our participants worldwide through conferences, journals, and public reports.
Please feel free to contact me if you would like more information about this survey. Thank you!
Sincerely,
Elaine Biddiss, Survey Coordinator
PRISM Lab
Bloorview Kids Rehab, 150 Kilgour Road, Toronto, Ontario, Canada M4G 1R8
T: 1-416-425-6220 x3270 or 1-800-363-2440 x3270 (toll-free)
F: 1-416-425-1634
E-mail: esurvey@prismlab.org
Elaine Biddiss, Survey Coordinator <esurvey@prismlab.org>
Toronto, Ontario, Canada - Tuesday, November 07, 2006 at 15:50:03 (GMT)
I am a recent BK amputee (01/04) on the left leg with partial paralysis and a messed up hip on the right side so my prosthetic leg is my good leg.
I am in need of my second prosthetis.
My current one is a pin and lock system. I am interested in a vacuum system like the OttoBock Harmony but my prosthetist is against it saying the liner tears a lot and I can't risk a fall.
Please email me with your pros or cons for vacs versus pin lock. I am 5ft 4 and weigh 115lbs. I am really struggling with this decision.
Thanks,
Fern
Fern Alix LaRocca CFP EA <fern@afdadvisors.com>
Sunnyvale, CA USA - Tuesday, November 07, 2006 at 12:22:16 (GMT)
Hi All,
I'm am a blind, bi-lateral BE (below elbow) amputee, having lost my hands and eyesight, most of my hearing, most of my face (which is no big loss, since I didn't look all that good prior to the explosion anyway), and my right kneecap, in a demolition accident in 1984.
I was serving with the Army at Ft. Lewis, WA, when two pounds of plastics detonated slightly before I intended, screwing up an otherwise nice Sunday afternoon!
Being blind, I had a Krukenburg(?) procedure on the right stump (about 10 inches long), which is where they split the stump from the end, to the elbow, then separate the muscles, wrapping them around the two bones in the forearm. This gives me a lobster claw-type forearm, which allows me to somewhat feel what I grasp.
I rotate my wrist clockwise to close the pinchers, and counter-clockwise to open.
Prosthetics are not that useful to the blind, since I cannot "feel/see" what I am grasping!
My left stump is about 6 inches long, and too short for a "Kruk."
I just finished my degree at University of Phoenix, and am employed as a Software Developer for Freedom Scientific, Inc., a developer of the JAWS (Job-Access With Speech) screen reading package that allows the blind to use computers.
For keyboard access, I use an outdated Adapt-2-U, a device that allows me to do keyboard input via Morse code. I can manage 55 wpms with this method, and use it to access my job, banking, shopping, etc.
One of my challenges (other than my 11-year old daughter, going on 30), is that I am trying to find a bidet that has controls I can operate!
I currently have an American Bidet, and it has a lever just to the left, and behind, that I can reach with my left stump, but the company is out of business, and the seat doesn't fit standard toilets all that well.
I would like one with the touch pad, but one that could have the pad mounted about shoulder-level (when sitting) that I can just touch with my left or right stumps.
Perhaps a remote?
Anyone got any ideas on these puppies? Perhaps a foot pedal?
Any assistance would be appreciated!
PS:
I cracked up when I saw/heard the name of the site on Google!!
Thanks,
Dennis...."Visually impaired as a bat!"
Dennis Brown U.S. Army Retired <DennisTBrown@Comcast.net>
Stone Mountain, GA USA - Saturday, November 04, 2006 at 22:26:23 (GMT)
My dad just had his right leg amputated yesterday. He has been suffering from rheumatoid arthritis for a couple of years. Initially, they only took the toes, but due to the restrictive blood flow, the wound was not properly healing.
I knew that a leg amputation was a possibility, but it was so devastating nonetheless. The only thing I can think about is how active my dad used to be, how he walked me down the aisle, how things will never be the same.
Has anyone out there suffered an amputation caused by RA or know of someone who has?
I know that he has such a hard battle ahead, which could be compounded by his illness.
Does anyone have any advice or words of encouragement?
Thank you.
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."
---Albert Einstein, 1879-1955---
Celeste Barber <cel_e2001@yahoo.com>
Culloden, WV USA - Tuesday, October 24, 2006 at 18:45:42 (GMT)
Tom...I'm an honorary Stumps member. I had both hips replaced this past year. I say I had my amps at the top instead of the bottom.
I'm also a retired doc (family practice and ER)
I have a BMW K1200LT with a sidecar.
I read your post on the Stumps guestbook and thought you'd like the following site.
http://www.mtb-amputee.com/motorcycleamputee.htm
When you're going through Hell, keep going.
Winston Churchill
"A rock pile ceases to be a rock pile the moment a single man contemplates it, bearing within him the image of a cathedral."
Flight to Arras
Antoine-Marie-Roger de Saint-Exupery
Curt Kovacs, M.D.
Sun City , AZ USA - Thursday, October 12, 2006 at 23:12:23 (GMT)
Thank you...I'll research Hosmer's options and availability.
Rick Carlsen <RickCarlsen@prodigy.net>
USA - Wednesday, October 11, 2006 at 12:25:03 (GMT)
I have started the only gay (LGBT) amputee peer support and discussion group in San Francisco. Our first meeting was Saturday. We will be meeting monthly. I have done a lot of community outreach with more to come, and I thought there may be some in your group who might be interested.
I am myself a RBK from a motorcycle accident in 1992.
We have a simple website set up at www.sanfranciscogayamputees.org that I update with meeting schedules and contact information. I have also got a listserve set up.
The next meeting is Saturday November 11 from 11:30 am to 12:30 pm at the LGBT center at 1800 Market street in San Francisco.
Peter Little <peterclittle@msn.com>
San Francisco, CA USA - Tuesday, October 10, 2006 at 00:16:47 (GMT)
Tom Lanno in Boone, NC...Your best bet is to contact The Amputee Coalition of America's National Limb Loss Information Center Toll Free: (888)267-5669
The ACA has a national data base of Amputee Support Groups.
Good luck Tom!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Saturday, October 07, 2006 at 12:42:35 (GMT)
Dan...I am trying to keep a positive attitude about the impending amputation of my left leg due to diabetes. I enjoyed your photos and approach to dealing with things.
I, too, am a motorcyclist and while things look somewhat bleak today, I will keep your "Stumps R Us" thoughts to help me through this.
Do you know of such a support group in the north western North Carolina area? (Boone, NC)
Be well -
Tom Lanno <tplanno@bellsouth.net>
Boone, NC USA - Saturday, October 07, 2006 at 12:37:13 (GMT)
The Inspirational "This Old Cub" and Stumps R Us
"This Old Cub" is our critically acclaimed documentary feature about Ron Santo, former All-Star 3rd Baseman for the Chicago Cubs. Ron is a double amputee who has lived with diabetes for over 48 years. The second act of our film documents his courageous rehabilitation after his second leg amputation.
Ron's story has already inspired thousands of people who suffer from diabetes and, through our film, we have raised $500,000 for the JDRF.
It is our goal to get This Old Cub out to as many patients as possible across the country who have undergone, or will soon undergo, amputations. We know Ron's story can have that same kind of positive impact on the people out there who are amputees. We would like to create a win-win situation with an organization that shares our goal in getting this film out to as many patients as possible.
Your involvement could be as simple as reviewing the film for your members but we are certainly open to any ideas or thoughts you might have.
There is additional information on our website, www.ThisOldCub.com.
I'll look forward to hearing from you.
And if you are a SF Giants fan, please do not hold that against us since Ron played for the Cubbies.
Patrick <contact@thisoldcub.com>
Chicago, IL USA - Thursday, October 05, 2006 at 22:31:35 (GMT)
Hi...I have a question for you.
My name is Christie Hagedorn and I have been an amputee since 1985 due to an accident. I have a left B/K trauma amputation which has lead me through many journey's. 11 years on crutches and 22 surgeries.
I am a fitness trainer for the YMCA of Davenport IA. My dream is to start up a huge program through the YMCA's of America to get amputee's into fitness and personal training and come for mental and emotional reasons as well!!!
I have personally trained non-amputees and they are sooo encouraged by me and what i have done and can do just being a amputee.
I now have my 4 kids grown. I would love to get other amputee's excited and about exercise and fitness!!!!!
If you know anyone who would love to be personally trained or if you have any suggestions i would love your input!!!!
Thank you for everything you do for amputees.
christie Hagedorn <tim_christie@mchsi.com>
Davenport , Iowa USA - Wednesday, October 04, 2006 at 19:10:17 (GMT)
Reba Goodwin...I elected to voluntarily amputate in order to get on with my life. I never regretted the decision. I didn't want to face a life of UNECESSARY pain and limited mobility. The amputation solved that problem COMPLETELY!
Your decision is a sound one and I have a recommendation for you.
Please consider having an ERTL surgical amputation. You will find links and full explanation of the procedure on page one of this web site.
Be sure to get a video tape of the ERTL procedure and choose a surgeon recommended and trained by the ERTL brothers. (the tape is available from the Barr Foundation in Boca Raton, Florida). Be certain you and your Doctor get the follow up protocols from the ERTL trained surgeon.
Good luck in your second chance at a better life!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, October 04, 2006 at 13:32:28 (GMT)
I am a 35 yr old mother of two preschoolers. I live north of Boston. I have had 13 surgeries in 15 years on my left knee, but with many more to go.
I have been considering electing an above-knee amputation to improve the quality of my life.
As an athlete in high school I tore my ACL, meniscus and cartilage. Half a dozen surgeries later, I was finally diagnosed has having a "malalignment", my femur and tibia did not line up properly, presdisposing me for all my injuries. I had my tibia cut in half and rotated and pinned. However, still having caritlage issues, I grew bone spurs which dug holes into my femur. I had a cadaver bone transplant which subsequently failed.
I had doctors tell me the only thing left to do was to pin my femur and tibia together, which to me would be no life at all.
Last year, I finally found someone to give me a total knee replacement- he said it was one of the worst knees
he has seen, like an 80 year old. The replacement had given me some relief, but I only get between 15 degrees and 90 degrees of mobility.
I now keep having to have aggressive scar tissue removed. Each time it is surgery, then physical therapy and then the scar tissue comes back within weeks of being removed. My Tibia is also osteoporotic and every step is painful. All of which has caused scoliosis in my back and pain daily.
I am weary, want to get off the pain meds and be an active mother with my two children. Emotionally, I can't handle having to keep going in for experimental surgery after surgery, just to end up needing full replacements every 10 years or so.
I just want to get healthy again, play with my children and not have to watch from the sidelines because I am in pain or on meds.
According to your introduction, you said you do not regret your choice. Do you know of others who have elected amputations?
Thank you for listening.
Reba Goodwin <rgoodwin22@hotmail.com>
USA - Wednesday, October 04, 2006 at 13:22:46 (GMT)
Rick Carlsen in Fayetville, Arkansas...Stumps 'R Us C.P. Wayne Koniuk suggests HOSMER.
daniellle cavezza <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, October 03, 2006 at 13:02:50 (GMT)
I have a pretty short stump on my left arm, only 3 inches below the elbow, due to birth defect.
I'm 46 and have worn my prosthetic my entire life, a split socket elbow joint and hook. My lack of leverage has required the use of a "step-up" style elbow hinge. The problem is they get sloppy after a few months, and there doesnt appear to be many suppliers/styles.
I tried one by Otto Bock recently for the 1st time. It worked great about 6 mos, then broke.
Does anyone know a supplier of a good, sturdy step-up hinge??
Thanks.
Rick Carlsen <rickcarlsen@prodigy.net >
Fayetteville, ARK USA - Friday, September 29, 2006 at 12:09:34 (GMT)
Sarah Iverson Sundance Catalog Community Relations
Contact The One Shoe Crew. Their address is:
One Shoe Crew
9328 Aizenberg Circle
Elk Grove, CA 95624
That is precisely what these good people do.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, September 28, 2006 at 00:24:36 (GMT)
Hi there
My name is Sarah an I work for Sundance Catalog we have a large amount of shoes we receive from vendors as samples, because they only send one shoe we don't have any need for them and are looking for a place to donate them to. Is that something you would be interested in?
Sarah Iverson
Sundance Catalog
Community Relations
Sarah Iverson <Sarah.Iverson@Sundance.net>
USA - Thursday, September 28, 2006 at 00:21:08 (GMT)
My husband is an amputee who has lost both of his lower legs below the knee to diabetes. We live in Oregon and he is looking for a support group.
He would like to talk to others that are similar to him. He is only 79 years old and has a wonderful attitude and doesn't feel sorry for himself.
Please let us know of a localsupport group.
Thank you
Daniel and Judy Clark <ju5cl@aol.com>
Riddle, OR USA - Tuesday, September 26, 2006 at 12:55:22 (GMT)
Lorraine Skiles in Union, MO... If the young man is in Mo.
he most likely has coverage under Medicaid, provided he wants to be helped.
He should make an appointment for an evaluation and estimate for rehabilitation with a local prosthetist that most likely will submit his payment to Medicaid.
Go to www.abcop.org and enter the city and town the amputee lives in and ask him to contact them.
If he does not qualify below are our funding parameters.
The Barr Foundation Amputee Assistance Fund was established in 1995 through grants from the Barr Foundation. The mission of the fund is to provide assistance to amputees that cannot afford limbs, have no other financial resources, and to promote quality prosthetic care for all amputees. This is accomplished directly by providing reimbursement for materials and maintenance costs to prosthetist that provide limbs to amputees who have no other source of funding. This program is a cooperative effort between the Fund and the amputee's prosthetist to improve the quality of life of the amputee.
Benefactor sponsorships maybe also made available to those amputees whom are not USA citizens and have individuals, churches or business organizations to make tax deductible donations to the Barr Foundation whose funds can be specifically utilized for a select applicant.
In order for the amputee to receive an application, they must contact a board certified or state licensed prosthetist that may be willing to sponsor them.
See:
http://www.abcop.org
The prosthetist ,considering sponsorship, must request the application directly from us by calling 561-394-6514.
It is suggested that the amputee be evaluated by the prosthetist that may be sponsoring him/her, prior to them requesting an application in the amputee's name. Please provide the prosthetist with the amputee's name, address, date and level of amputation and telephone number.
At this time bilateral amputees are not being processed for funding unless another source of funding from an individual(s) or organization(s) is participating to share equally in the reimbursement level as outlined in the application.
The Applicant will be reviewed and interviewed for the screening process by one or more members of the review committee upon submission of the application, which is to be completed by both amputee and prosthetist. The applicants will be considered based on need, first time for prosthetic rehabilitation, age and general health conditions. Sponsoring prosthetist must accept our reimbursement levels as payment in full and provide a six
(6) month warranty for adjustments and components used.
First time amputees will be required to receive gait training as a condition of the approval by the sponsor, physical therapist or other qualified personnel at no cost to the applicant.
The application must be completed within 30 days and returned to us with a $25.00 nonrefundable application fee. We will then have 4-6 weeks to process the application and the prosthetist will be notified as to approval or denial. If the application is not received within the 30 day period of sending the application it will be cancelled and the prosthetist considering sponsorship will have to resubmit.
We will request that proof of denial of any other funding resources be provided at the time the application is submitted.
Most likely the patient can qualify for Medicare/Medicaid funding.The prosthetist can help you determine that.
Thank you for your interest, if there is anything else we can do, please e-mail or give us a call at 561-394-6514
Sincerely,
Anthony T. Barr
Barr Foundation
Tony Barr, Founder Barr Foundation <t-barr@t-barr.com>
Boca Raton, FL USA - Monday, September 25, 2006 at 23:19:47 (GMT)
I am a nurse who is caring for a quad-amp. She is a new amp and we are trying to find ways for her to adapt and be able to go home pending prosthetic fittings. My problem is this.
She is able to toilet herself but is unable to don and doff clothing. I am interested in tips from others as to ways that they have adapted clothing to be more independent.
My client is a bilateral above the knee and missing all digits and part of the palms of both hands. Any help or advice that you may be able to direct in my way would be greatly appreciated.
Thanks so much.
Mary Ann <nursemoondancer1014@verizon.net>
USA - Monday, September 25, 2006 at 15:28:12 (GMT)
Lorraine Skiles in Union, MO...Could you be a bit more specific?
For example:
1) A/K or B/K
2) His name
3) Where he lives
4) If he is a minor who would act as his guardian?
5) Is he a U.S. citizen?
6) How would he be contacted?
I suggest you contact Tony Barr of the Boca Raton BARR Foundation with these specifics already answered. Perhaps Tony can assist you and your phantom amputee.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, September 25, 2006 at 15:20:30 (GMT)
I have just learned about a young man-- no insurance, who is minus a leg. His mother is deceased and the father likes beer --- So there is no support for this youngster.
He is a teen ager, I think.
I do not have all the details about how he became an amputee so am asking if anyone on our mail list might be able to give me information that I can, in turn, pass on to someone who is interested in getting this person on his two feet again and out of the wheelchair.
Lorraine Skiles <lorskile@fidnet.com>
Union, MO USA - Monday, September 25, 2006 at 15:14:03 (GMT)
I am a television researcher based in the UK looking for people who have survived through extreme circumstances.
We are in development with a new science based programme and in particular we are looking for people who have had to cut off a part of their body to survive and we want to hear about their brave story. Just wondering if you know of anyone who maybe interested in talking to me about their experiences and their personality which gave them the will to survive.
Hoping to hear from you soon.
Emma Martinhttp://www.angliafactual.com
Emma Martins
Associate Producer
Network Factual
ITV Anglia
(00 44) 1603 752275
www.angliafactual.com
Please visit the official ITV website at www.itv.com for the latest company news.
Emma Martins <Emma.Martins@granadamedia.com>
UK - Monday, September 25, 2006 at 15:05:12 (GMT)
Dave Paschold in Lincoln, NE...Yours was a brilliant and soundly educated choice to have chosen Orthopedic Surgeon William ERTL to perform your B/K amputation.
The ERTL Procedure has changed so many lives into productive, positive, relatively pain free futures.
Continued good fortune and even more good decisions.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, September 12, 2006 at 21:16:39 (GMT)
A brief note to let you know that I was in to see my prosthetist (Jason Dean) this morning, and was able to walk on two feet for a while.
He had made the prototype, and will make a more durable socket that I expect to get into next week on the 21st.
There was some pain to the walking, but nothing out of the ordinary for the scope of what has happened in the last 8 weeks.
Jason indicated that it would be highly improbable that I would be into anything this soon had I gone through surgery with a NON-ERTL BK. Dr. William ERTL is my hero!
It felt great to be back up on two feet for that short time.
Thanks for the interest. I will keep you updated.
Dave Paschold <dlpaschold@agriliance.com>
Lincoln, NE USA - Tuesday, September 12, 2006 at 21:10:45 (GMT)
Ken
I'm praying for you. Hope all goes well!
Agnes
Agnes Gootee <agnes.gootee@navy.mil>
USA - Monday, September 11, 2006 at 12:26:14 (GMT)
Jim Fay in Boston, MA...Join the Stumps 'R Us CREW? With your whimsical and positive attitude we would love to have you as a dues paying active member.
Send your USPS address and phone number to:
Stumps 'R Us
Attn: Dan Sorkin
2109 Skycrest Drive #1
Walnut Creek, CA 94595-1828
By return mail I will send an Amptee Survival Kit PLUS a Stumps 'R Us Membership application including an invitation to our next event in October in a Concord, CA Buffet Asian Restaurant (details on page one of this web site) It is well worth the plane ride to attend.
daniellle cavezza <DanSorkin@gmail.com>
San Francisco, CA USA - Saturday, September 09, 2006 at 19:19:37 (GMT)
Hi Dan
I would like to join your crew.
I am 58 and in 2003, I was in the Lobby of Beth Israel Hospital of Boston waiting to see a Vascular Surgeon for a Lower Leg ByPass when my appendix burst and I had the DT's.
After 3 Months in a Coma I awoke to find My Left Leg had gone to Heaven without Me. I also had a Stroke while "Napping"
Never get sick in early July-You are SURE to meet Doogie Howser-I am told.
As a Graduate of Villanova, I spent time making a living as a Manufacturers Representative-Office Supplies(B/4 Staples Etc), Small Leather Goods and fine Writing Instruments(Pens).
I have logged over 14,000 NM in 3 Boats of my own and currently STILL sail CONNEMARA, a Sabre Sloop.
In addition to 3 Months at Beth Israel, I was lucky enough to get into Spaulding Rehabilitation Hospital in Boston, one of the Worlds best.
Over 2-3 More Months, they taught me how to walk again. They also decided that I was an Alcoholic-Imagine!
I came from there yesterday after attending an Amputee Support Group as an outpatient. There were 3 of us. SO SAD.
Best
You can find Me on EBAY as:
TheCaneGent
I could not find "Nice" Walking Sticks anywhere.......
Jim Fay <JAMESLFAY@cs.com>
Boston, MA USA - Saturday, September 09, 2006 at 19:10:04 (GMT)
David Alstone ~~~~~~~~I'm not advocating breaking the law but I also know that prosthetics are being sold or auctioned on eBay.
I can't guarantee reliability or responsibility for any item there but you as an individual and your friend as Americans can buy anything you want there.
The legal mumbo jumbo about buying used prosthetic devices in America is true but I think the repercussions are for CP's and O&P Clinical Offices.
My thought is it's like the "DO NOT REMOVE" tag on the bed pillow. Who's to know where you got your leg as long as it works.
As always shop wisely and do your research
On a comical side I hear outdoor patio umbrella stands and Duct tape work well..
Have a good week
Joe Kennedy <joseph.kennedy72@verizon.net>
Lutz, FL USA - Thursday, September 07, 2006 at 22:50:31 (GMT)
I hope that at least someone will help with info or good advice
I’m writing on behalf of my friend. His situation is rather complicated, he isn’t fluent in English so he cannot advocate for himself.
He is a young,intelligent guy, who just started his adult life.
He is not covered by any insurance and he can’t afford to pay for his prostheses after he lost his leg and his job (he was/is a construction worker).
He needs to work again in order to buy himself a new prostheses. In order for him to get back to work, he needs a temporary but working A/K prostheses, There is no other means, options or any “happy endings” in this case.
I know that artificial limbs cannot be reused in the United States. We don’t want to break the law. But a technician, who is familiar with these matters has offered to assemble a prostheses for my friend. All he needs are the mechanical parts.
My friend is desperate and has no other choice but to use this temporary prostheses, until he saves enough money to buy a new one.
If anyone is willing to spare an old, right leg above knee prostheses to be disassembled, please contact me.
That would be appreciated.
I will cover all the shipping expenses and will be forever grateful for helping my friend in this very difficult, uncomfortable and uneasy situation.
Any other sugestions, tips advices may help as well.
Thank you...
David Alstone <alstonex72@yahoo.com>
USA - Monday, September 04, 2006 at 15:26:15 (GMT)
Hi, Amy...
I am the wife of a diabetic amputee (LBK) who is trying to heal some ulcers on his stump and on his remaining leg. I have been reading the posts on this site and they have been very helpful to me.
I am looking for support for myself as the caregiver and I can offer you support on your journey. Write if you would like to.
Mary in Massachusetts
Mary <WeRPenguin@aol.com>
MA USA - Monday, September 04, 2006 at 05:33:29 (GMT)
Amy Pederson in Houston, TX...
The best place to find support groups in your area would be through the ACA (the Amputee Coalition of America).
You can scan their Web site at:
http://www.amputee-coalition.org
Or E-mail them directly at:
editor@amputee-coalition.org
Or call them TOLL FREE at:
(888) 267-5669
Dan Sorkin <DanSorkin@gmail.com>
Santa Rosa, CA USA - Saturday, September 02, 2006 at 16:30:48 (GMT)
Hi...
My husband is 34 and just had a bilateral below the knee amputation, and now has had several fingers removed with the possibility of having more removed and possibly his hands.
I am looking for some info and support for him.
Thank you!
Amy Pedersen <Meandmycuties@houston.rr.com>
Houson, TX USA - Saturday, September 02, 2006 at 16:25:22 (GMT)
Hi...
I have had a Harmony system since Nov of 2005. I am very displeased with the durability of the inner liners. My prohstestist is also not pleased with them. They are only lasting about a week or two before starting to crack. They are having major quality issues.
The first one I had lasted about 5 months, and I thought that was bad, boy was I wrong.
Do you know of any other inner liners that will work with a Harmony VASS system?
I am going to try one of Smith’s evac inner liners to see how they hold up. I need something that will last.
The Harmony is more comfortable, but I need something that I know will not break every other week.
Thank you.
Lee Thomas <leethomas@prodigy.net>
USA - Wednesday, August 30, 2006 at 03:23:49 (GMT)
Linda Hogan
Stumps 'R Us Certified Prosthetist Wayne Koniuk of San Francisco Prosthetics suggests that you call:
Certified Prosthetist Stan Patterson at (407) 448-7969.
Stan fits hip disarticulations allowing the user to RUN!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Saturday, August 26, 2006 at 02:25:33 (GMT)
Linda Hogan...
It is remarkable how quickly a 14 year old will recover from a devastating injury. They are much better at it than we "adults" sometimes are.
From your description it does not sound encouraging for a prosthetic limb to be prescribed. There has to be some residual bone structure (femur) for the prosthesis to be attached.
That said, it does not mean that his athletic days are over. One legged skiers, snow boarders, drivers and pilots have conquered the problem with all kinds of ingenious solutions.
Send me your name & USPS mailing address. By return mail I will send an Amputee Survival Kit including a pamphlet bearing that name authored by Tony Barr of the Boca Raton, FL based Barr Foundation.
I have Cc CEO Tony Barr of the Barr Foundation, C.P. Wayne Koniuk, C.P, Julie Chandler and Angela Briguglio. Angela is a bi-lateral to the pelvis amputee and member in good standing (pardon the pun) of Stumps 'R Us.
Please keep me up to date on what progress is made with your 14 year old Grand Nephew.
Dan Sorkin <DanSorkin@gmail.com>
Santa Rosa, CA USA - Friday, August 25, 2006 at 22:06:02 (GMT)
Dear Dan,
I read about you on line while searching for information that might help my fourteen year old grand-nephew who. two weeks ago. was struck by a drunk driver while he was helping to push a car that had run out of gas. His left leg was nearly severed at the pelvis, and for the past two weeks doctors have beenworking around the clock trying to save his leg; however, it doesn't look hopeful. If an amputation is done, we have been told that because his hip joint is affected, there can not be a prothesis.
Is this correct information?
I guess having all three leg joints, ankle, knee and hip, impaired is something that is impossible to replicate.
Naturally our whole family is devastated and we are searching everywhere for helpful information.
Shane is the most wonderful teenager imaginable. He has always been a positive and loving boy which I'm sure will help him with his recovery. But his life will never be the same and the adjustment will be a great one for him since he is very athletic.
We are wondering what kind of referrals we might offer him that could help him with his recovery and subsequent adjustment??? Also, we wonder if there might be a really excellent specialist somewhere that we could contact on Shane's behalf?
Thank you so much~ we are greatly appreciative of all the help we can get!
Linda Hogan <lindarhogan@cox.net>
USA - Friday, August 25, 2006 at 22:03:11 (GMT)
Neal Seigfried in Bixby, OK...About the GHOST FOOT
I made a flexible cast of the socket and foot. I used this so the guy could have his leg back. I filled the cast with a pipe inserted so the cast would not break. A parting agent was applied and more plaster added until the desired shape was accomplished.
1/8 Surlon was draped and vacuum molded over this with the seam down the back. It Was removed trimmed and polished.
Your local Prosthetist or college artist should be able to do this.
Good luck!
Wayne Koniuk, C.P. <limbart@sbcglobal.net>
Santa Rosa, CA USA - Wednesday, August 23, 2006 at 03:18:46 (GMT)
Neil Seigfried in Bixby, OK...
No penalty...no foul!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, August 22, 2006 at 03:51:30 (GMT)
I'm sorry I forgot my info. It is as follows:
Neal Seigfried
11516 S 66th E Ave
Bixby, OK 74008
Thanks for the reply
Neal Seigfried <puglover22@cox.net>
Bixby, OK USA - Tuesday, August 22, 2006 at 03:50:06 (GMT)
Dave Paschold...
I am an amputee and a Seal In user, as well as a Technical Service Representative for Ossur (who makes the liners). Feel free to contact me directly and I can try to answer any questions you have as well as try to find you someone in your area.
Best regards!
Matthew Henderson <mhenderson@ossur.com>
USA - Tuesday, August 22, 2006 at 01:39:19 (GMT)
You have a lot of questions in your message.
It is going well, and I will be very interested in helping spread the word about the Ertl Procedure, as things progress.
My prosthetist here in Lincoln is Jason Dean, with Hanger. He has had experience in fitting Ertl patients, and is excited to work with my case.
I have spent countless hours studying and reading information on the ErtlReconstruction website, as well as the Stumps ‘R Us website, and as I get farther along, will be very willing to help out any way I can.
These resources led me to the procedure, and I realize how valuable it is.
On our 7 hour trip home to Lincoln from the hospital in Oklahoma City, just 5 days after surgery, I realized that the trip home was less painful (granted, I was on some strong pain meds) than the phantom pain I was experiencing traveling to OK City! I had sensed in the Ertl patient testimonies a bit of “unbridled enthusiasm” that almost appears unreal----until you go through it yourself to realize the difference! If the healing and fitting go as well as they have so far, I am eager to get on with things.
We will stay in touch!
Dave Paschold <dlpaschold@agriliance.com>
Lincoln, NE USA - Tuesday, August 22, 2006 at 00:54:09 (GMT)
David,
We are glad you are doing well with your Ertl and hope that the final outcome is successful.
The Barr Foundation funded the Ertl videos and supports and promotes the Ertl worldwide .
Could you also help us and others contemplating the procedure with a Ertl Amputee testimonial once you are successfully fitted?
Who will be your prosthetist?
Would you review the other 27 Ertl patient testimonials at www.ErtlReconstruction.com via Ertl Patient link, and consider doing one after your fitting?
Thank you.
Tony Barr Founder Barr Foundation <t-barr@t-barr.com>
Boca Raton, FL USA - Tuesday, August 22, 2006 at 00:43:09 (GMT)
Madonna Neely & Roy Webster...Please call Driving Specialties Limited and tell them I suggested you call. They are specialists in adapting car controls (moving the accelerator, etc.) for amputees.
They are located in Vallejo, CA but should be able to suggest a vendor in Seattle or Spokane for you
Call (707) 553-1515
Good luck!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, August 21, 2006 at 01:58:47 (GMT)
My Dad is an 82 year old amputee, right leg. He has been trying to get his Town Car ready to drive and is having trouble finding a place to install the necessary equipment.
We live in rural Washington state, do you have any advice on who to contact or where to begin? Spokane or Seattle are cities we could take the car to and get this done.
Any information would be appreciated.
Thank you!
Madonna Neely & Roy Webster <webbrf@charter.net >
Rural, WA USA - Monday, August 21, 2006 at 01:47:18 (GMT)
To: Kathy Shank
Subject: New Amputee/Show him these videos -read him the testimonials.
http://www.ertlreconstruction.com/
Kathy,
Send me your address for mailing a book that I think will help motivate Ryan (and you) to know he is able to do everything he once did with proper prosthetic rehabilitation and the proper mind set. Life isnt always beautiful but it is a beautiful ride provided you make it that way !!
Here is what they are saying about the 2006 Amputee Survival Guide that I will send to you.
"A Survivors Guide For The Recent Amputee is the premier amputee resource booklet. Published and available from the Barr Foundation, it promotes beneficial amputee education. To realize their full potential, all amputees need to make intelligent and informed healthcare decisions. Obtaining accurate reliable information is the key to this endeavor. The Survivors Guide is designed to provide all the necessary answers. Written by amputees, for amputees, this important diminutive publication is straight forward, well reasoned, logical, and informative".
Kim L. Ruhl CPO
Good luck to both of you!
Tony Barr Founder Barr Foundation <t-barr@t-barr.com>
Boca Raton, FL USA - Friday, August 18, 2006 at 03:15:10 (GMT)
Kathy Shank in Wedgeville, WV...Be honest with your son about his loss. Believe me, he knows a part of him is missing.
Present the positive aspects of what happened to him. He is alive...his brain is not damaged...and he has lots of family and medical support AND thousands of people have suffered the same loss and got on with their lives with a positive attitude.
He will have emotional ups and downs...all normal. Having positive people close by is what he needs.
With a below knee prosthesis there is literally NOTHING he cannot do once he learns to walk, run, dance, fly, play basketball or anything else he did before the amputation in rehab.
After losing my leg I earned an Instrument Flight Instructor Certificate with Commercial priviliges and flew as Chief Pilot for an American Corporation until retirement.
He should feel free to E-mail me any time if he has any questions. I promise to answer immediately.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, August 17, 2006 at 22:02:22 (GMT)
My son, Ryan, was in a terrible car accident August 8,2006. He lost his left leg below the knee. He is not awake yet and does not know of his loss.
What do I say, how do I help him to be strong?
Kathy Shank <heritage11@starband.net>
Hedgesville, WV USA - Thursday, August 17, 2006 at 21:46:19 (GMT)
Lowell Sullivan...Sorry to hear (read) about your troubles with your socket. I’m an AK and have been living with the same issues for almost 20 years.
1) I much prefer the suction socket to anything else
2) I am in pretty good physical shape, and have an extremely long residual limb
3) When I lose weight I have those same “slippage” problems and when I exercise and the leg sweats to much.
4) I never use the liquid fit – don’t like the way it feels… I use a pull sock only.
I simply live with those same several annoyances (except the liquid fit part) and I have learned to keep my weight fairly consistent and I have not really found any other viable options – I wish I could be more helpful. If there is anything I can do or add please let me know.
All my very best ~LNK
Laurence N. Kaldor <Phenix7@msn.com>
Los Angeles, CA USA - Thursday, August 17, 2006 at 14:29:48 (GMT)
I am a very active BK.
The problem is I keep getting holes in my suspension sleeve's, and this causes air leaks so I end up losing my vacuum.
All I have to do is bump my shin against something and the inner gel liner splits, You can't see it from the outside but the hole is through the gel.
Has any one had good luck with any particular sleeve, or would I be better to try a neoprene sleeve?
Any advice would be much appreciated.
I would love to find a sleeve made of a rubber like an inner tube.
Todd VerWys <ToddV@classicdie.com >
Lowell, MI USA - Tuesday, August 15, 2006 at 18:36:15 (GMT)
Gabrielle,
There are many different ways of expressing love for another human being. Honesty and reality are but two devices in the quiver in the thoughtful caregiver be he (or she) a spouse, friend or acquaintence.
Verbal or physical abuse should be tolerated by no one no matter what the circumstance. You don't help someone by acquiessing to their fearful outbursts. You tell them the truth...always. The only sin is in abandoning the individual UNLESS they are physically abusive or place you or others in danger.
Political correctness never cured anybody of anything.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, August 15, 2006 at 18:23:15 (GMT)
Dan this is Gabrielle from Jacksonville Fl in the U.S.A.
As noted in my previous post to Mary Hulser I am a care giver to my husband who has a brain tumor and am also an amputee, so I am in both situations of living with someone who has had some thing horrible happen to them as well as having lost my leg to a misdiagnoses, so I was speaking to Elaine from both experiences.
My husband went through lashing out at me, but instead of telling him to get over it and move on, I have the compassion to understand and work with him where he is at in his healing process. When we love someone they are not a burden when they need to lean on us while they get strong, it is just part of loving them in good times and in bad.
You would do well to understand that not everyone feels that an amputation is a minor annoyance and not everyone is thirty some thing years out from having the amputation. It's a process of healing. You are well ahead of many people who come to this site for help. If you were perfect in this in the beginning that is wonderful but many like me are not.
Gabrielle Lincoln <lbkpenguin@yahoo.com>
Jacksonville, FL USA - Tuesday, August 15, 2006 at 18:07:24 (GMT)
Mary Hulser N. Brookfield MA
I am a two year out LBK amputee facing a reconstruction next week. I am also a care giver for my husband who is a brain tumor patient, so I can relate from both sides of the coin. And as such I can tell you that "verbally slapping" your husband is not the answer. He is needing to express his emotions of what happened to him. If he is projecting those emotions at you then I would suggest that you try talking with him and acknowledging his need to express those emotions so both of you can work on finding ways for him to do so that he is still able to express it outward but in a different direction then at you.
This is a hard time for both of you, also think about seeking a therapist for yourself and your husband.
My husband was not open to therapy but I go. It helps me to process things of my own issues with my leg and also with having a healthy way to help my husband.
Gabrielle Lincoln <lbkpenguin@yahoo.com>
USA - Tuesday, August 15, 2006 at 14:35:49 (GMT)
Mary in Quebec City, Canada...
That old adage, "One day at a time" really applies here. It reads as if Pat is doing too much. As a diabetic amputee he really has to be careful as the wounds are slow to heal.
There is a compromise somewhere that allows life to go on without being macho to the point where the stump is damaged.
Sky diving is probably not a good idea...today.
Having a friendly, affectionate wife with a sense of humor is all Pat can ask for.
You are playing out your role PERFECTLY! Keep it up.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, August 15, 2006 at 14:11:23 (GMT)
Hi...It's Mary from Mass.
I wrote to you the other day and I posted on StumpsRUs about slapping my husband.
We are now on vacation in Quebec City with our two teenaged children and it's difficult. We are trying to make the best of it, but Pat is having lots of trouble walking, has a cut on his foot, blister on his stump, wheelchair broke, can't rent a heavy-duty scooter, and QC is beautiful, but hilly.
It's really not as bad as I'm making it sound. We are happy to be here and to have him with us as we almost lost him last summer due to septic shock.
Many things will be dealt with when we get home, but for now, I could use a dose of humor and wise articulation.
Thanks
P.S. The most recent posts--Elaine, Gabrielle are hitting home and giving me lots to think of.
Thanks
Mary <WeRPenguin@aol.com >
Quebec City, Canada - Tuesday, August 15, 2006 at 14:04:17 (GMT)
Gabrielle in some city in some state in some country...
Thank you.
Your "advice" was posted to the Stumps 'R Us on line www.stumps.org GUESTBOOK at 5:59 AM Tuesday August 15th, 2006.
Your help might have carried more weight had you shared a personal experience with the whining mother who is determined to burden her daughter with undeserved guilt.
A minor annoyance like amputation is no excuse to destroy the lives of those closest to us.
As adults we should be better than that. We should be role models for our children.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Tuesday, August 15, 2006 at 13:14:28 (GMT)
Ms Elaine from MD
It's perfectly normal to want to have your independence back, good for you! But it is also important to "WHINE" when you feel like it.
Cry, be angry etc. If we don't go through the emotions of the loss when we are going through it then it will come back at us later, either in physical problems or emotional problems.
Oh, wouldn't life be grand if we all could just laugh at every thing that happens to us, but guess what we are human, so be human and laugh when you can and cry when you need to.
Talk with your daughter about your need for independence, I would venture to guess she will be willing to listen and work with you to get you where and what you need to be the happiest.
Good luck and know you are in my prayers.
Gabrielle Lincoln <lbkpenguin@yahoo.com>
USA - Tuesday, August 15, 2006 at 12:58:18 (GMT)
Stephen,
What is your last name? What City & state are you in? What country?
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, August 14, 2006 at 00:48:41 (GMT)
Hello Everyone
I will be having a b/k R leg on aug 22..r/t avascular necrosis..i am doing ok only mini moments of panic..am looking at this with humor..
Stephen <sresolvert@yahoo.com>
USA - Monday, August 14, 2006 at 00:45:20 (GMT)
Elaine from MD...Stop whining and get on with your INDEPENDANT life.
It sounds as if you have an incompetant moron as a Certified Prosthetist. There is no reason in the world why you are not dancing, dating, driving or sky diving...if that is what you want to do.
Be more aggressive about a proper, comfortable fitting prosthesis so you are completely mobile again. Get out of the basement and into the world.
Driving is no problem for amputees any more. You may need a device that moves the accelerator so you can use your left leg to use it. They are relatively inexpensive and are usually installed in less than an hour.
Good luck. When I hear from you again I assume you have emerged from the basement.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, August 11, 2006 at 16:30:33 (GMT)
Hi...
This is my first time using this message board. I am a divorced 63-year-old female R/AK amputee since spring 2005. I had complications after my surgery and was on a wound vac for most of last summer. In April of this year, I started my journey with using a prosthesis.
I have had all the usual problems with a prosthesis, mainly getting a proper and comfortable fit.
Prior to this amputation, I was a totally independent person. I controlled my own life and planned my own day. My daughter sold her old house (which she loved) to get a bigger house so I could come and live with her and her family.
One of the problems is that this house is not handicap friendly. It is 3 levels and I live in the basement apartment. I don't get out of the house as much as I would like and I feel so trapped. I am not ungrateful for what my daughter has done for me but unless things change and I am not so isolated, I don't know what will be come of me.
I feel like I am wasting away. I want my independence back so badly. I am trying to use the prosthesis but it has been difficult for me.
I also want to drive again.
How long does all of this take? Will I ever see the light at the end of the tunnel?
Elaine from Maryland <Lainiebrooks@comcast.net >
MD USA - Friday, August 11, 2006 at 16:19:22 (GMT)
I recently had an accident with some fireworks that resulted in me being a little "short handed" these days.
I lost my left hand right at the wrist. I'm well over it.
It happend 9 weeks ago.
What I want to do is have a little fun with it now. The guy that is building my hand agrees with what I want to do.
I want to find a 5 finger metal hand, quick release, that kinda looks like the Terminator hand in the movie. The sleeve is going to be air brushed to look like the inner workings of a robot/cyborg kinda thing. We are having some trouble finding such a hand.
Any ideas?
Rob Martin <PartsCar@aol.com>
USA - Friday, August 11, 2006 at 01:47:21 (GMT)
Mary Hulser in N. Brookfield, MA...As Dr. Laura would say, "Stumps 'R Us doesn't cure NORMAL".
Your husband being a diabetic amputee does not give him the luxury of abusing those closest to him. A positive attitude and lots of well applied humor does a lot to make life easier for all of us...your husband included.
Should your husband lash out at you or whine constantly you have my permission to "slap him silly" verbally.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Thursday, August 10, 2006 at 12:41:04 (GMT)
Hi
I am the wife of a wonderful man who had a BKA about a year ago due to diabetes. He is now experiencing some diabetic bullae (blisters) on his other leg that we are trying to heal.This situation brings up the trauma from last summer.
I am looking for support for myself. I tell my husband that I vary between wanting to take care of him and wanting to slap him silly.
Can anyone relate?
Mary Hulser <WeRPenguin@aol.com>
N. Brookfield, MA USA - Thursday, August 10, 2006 at 12:15:43 (GMT)
Leah in Milton, MA...The best thing you can do for your boy friend is to be cheerful and upbeat when you visit. He will have up days and down days. That is what we call NORMAL.
When he has questions have him E-mail them directly to DanSorkin@gmail.com I promise to answer immediately.
Once he has completely healed and physical rehab is begun he will be fitted with a prosthetic device so he can return to a normal life.
Successful rehabilitation is ALL in the attitude. It works for all of us amputees.
Amputation is but a bump in the road of life. I lost my leg in a motorcycle accident too BUT it was my fault. I was going much too fast for the road conditions.
That was more than 30 years ago. Today I am an active Instrument Flight Instructor, teach computer science, run Stumps 'R Us and have been happily married for 25 years.
Good luck to both of you!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Wednesday, August 09, 2006 at 02:10:00 (GMT)
Hi!
I'm really hoping you can help me.
28 days ago, my boyfriend was in a motorcycle accident, and had to have a BK amputation. He is currently still in rehab, and I go visit him every night, but I know he has questions. Questions that I don't know the answers to - or even how to make him feel more at peace.
I love him very much and if there is anything that you can give me as far as advice to help get him through this, it would be greatly appreciated. I just don't have the right words to say right now, and I was hoping you have some.
Thank you very much for your time.
Leah.Coughlin <Leah.Coughlin@REEBOK.com >
Milton, WA USA - Wednesday, August 09, 2006 at 01:58:33 (GMT)
Its Been a while since I've seen any humor in here and it is my duty to uphold the mission statement of Stumps 'R Us
"Enjoy Folks"
100 reasons to be disabled
1. Cool toys.
2. Free money.
3. Random guys pick you up and carry you places.
4. Always the last person to be suspected of anything. (so true...)
5. Never have to wait in line at theme parks or concerts.
6. Priority housing.
7. Everyone thinks you're sweet and innocent (even if you're not).
8. No strangers will ever confront you because they're afraid of hurting your feelings.
9. When you run over people and tell them it's an accident, they actually believe you.
10. You can get people to do things like cook for you because you're in the chair.
11. Never have to take the stairs.
12. Hills are great fun if you have a wheelchair! (At least going downhill.)
13. People always look at you like you're an inspiration.
14. Double rides on all roller coasters.
15. Some teachers offer to help you out with notes, and you can show up late for class.
16. Every time you stand up, you can freak strangers out (or get an ovation from a crowd.)
17. Enormous bathrooms.
18. Shoes are an option
19. It's a great excuse for anything! (It's not my fault, It's my disability!)
20. You never have to worry about finding a place to sit
21. You end up with mad wheelie skills to impress people with
22. When your drunk, people never suspect, they just think that you have CP!
23. Time extensions on exams
24. You never have to do anything to get attention-- people are already staring
25. Never having to walk to class
26. Being able to "walk" with a use of a joystick
27. ELECTRIC WHEELCHAIRS CROWDS = FEAR
28. Developing a high pain tolerance is never a bad thing
29. Never having to demonstrate a problem on the board during math class
30. If you're slow people chalk it up to your disability instead of pure laziness
31. Burning off every calorie you eat at lunch in one trip to a non-handicapped accessible building
32. You could go out with a gaping hole in the seat of your pants and no one would notice
33. No matter what kind of crap you pull no one will ever kick you out of Bar or Club (hahahahaha)
34. Your wheelchair can double as a shopping cart when you and your friends go shopping
35. Handicapped Parking
36. An excuse to use the bumpers when bowling
37. Boyfriends or Friends the like giving you lots of hugs, kisses and sympathy when you fall, which is often
38. If people drop you or make you fall accidentally, they feel so bad that you could get them to do anything-- the question is will you?
39. No one makes fun of you for tripping and if they say, "walk much?" you get to say no.
40. People go out of their way to open doors for you
41. Going to college is a HUGE deal, if you go everyone around you is amazed
42. Parents brag about how "strong" you are
43. You get to kill stereotypes on a daily basis
44. You always have a lap to hold stuff on
45. People part like the red sea when they see you coming
46. Being bad at sports is a given so as long as you attempt to do it people are impressed
47. You have more life experiences than most people you know
48. Handicapped seating is usually in the front
49. Never having to take classes like gym and shop
50. You can get out in the middle of class at times
51. You can kick or hit people and claim it was a muscle spasm
52. People give you free drinks at coffee houses because the people at the counter think you're "sweet" )
53. If you break something by running into it or over it no one makes you pay for it.
54. You can meet the most awesome people when you have to ask strangers for help
55. Fuck with the heads of all the people that want to "save the poor crippled girl"
56. You can have your friends do your hair and makeup for you
57. The media loves you!
58. Everyone knows who you are (actually, a lot of people don't too.)
59. You're never too old for piggyback rides
60. You make a good walker for your injured friends or drunk ones.
61. You can get all excited about stupid stuff and people just think you're "cute"
62. You never have to act your age if you don't want to because strangers think you should be immature (i think i might be a bit insulted by that...)
63. You get to amaze people by actually being able to swim in the pool
64. If you don't have your chair with you many, many people will scamper and offer you their chair.
65. You can single-handedly be the amusement of all your friends
66. You get some great material for stand up comedy
67. You learn to appreciate the small victories
68. You are easily recognizable in a crowd
69. You are not easily forgotten (especially if run people over)
70. You can hide things next to you in your chair and or shop lift are they realy going to search your chair.
71. You can swallow pills without water
72. You are popular (even if it is just 'cuz you're the "cute handicapped girl"
73. People like to party with you! (There's nothing funnier than a drunk crip)
74. You can use the word "crip" and not be referring to a gang member
75. You never have to worry about getting your feet wet
76. You can use those carts with the seats attached at the store and make everyone wonder what the hell you're doing
77. No one ever questions your excuses
78. Pain killers (paid for by someone else)
79. Biker gloves aren't just for fashion anymore
80. No one questions anything you wear, do, or say
81. Slamming into doors to open them is kinda fun
82. You get praised for doing the simplest things
83. You don't have to worried about people giving you wedges
84. No worries if your pants are too big
85. Falling everyday gives you the skills to fall without injuring yourself
86. No one messes with you (for fear of being run over by a chair or impaled with a crutch)
87. You can incorporate your wheelchair into your Halloween costume and go as a transformer
88. If you drop something someone else will pick it up for you
89. You can in more circles in a smaller amount of time than anyone else
90. You can invent fun Wheelschair friendly games (make none disabled person go down a ramp and watch them fall. It hilarious)
91. Braces make it so you don't have to shave as often
92. You can get as many tatoo's as you want on your legs without pain
93. You don't have to worry if shoes a comfortable you don't feel it any way.
94. You can get into most bars an clubs without paying a cover.
95. Never getting ID at bars and clubs.
96. If your drunk you get just take a little nap in your chair
97. Great way to pick a cute guy up in a bar is run them over that they land in your lap. It works everytime.
98. If you don't want to talk to someone you can make them think that your retarded and they will believe you.
99. You have great stories to tell at parties or gatherings
100. It just plain rocks and you know you're jealous!
Joe Kennedy <joseph.kennedy72@verizon.net>
FL USA - Monday, August 07, 2006 at 13:22:30 (GMT)
Cherie Los Angekes, CA USA ~~~~~~~~here are a few
CALIFORNIA
Amputees in Motion San Diego
Chapter N
La Jolla, CA
858-454-9300
Central Valley Amputee Support
Group
Sharon Busser
937 Coffee Road, #1
Modesto, CA 95355
209-825-5538
Functional Amputee Support Team
Charlene McHale
P.O. Box 7373
Orange, CA 92613
714-284-5566
Mutual Amputee Aid Foundation
Harry Pallett
P.O. Box 90261
Los Angeles, CA 90009
877-267-8828
People UnLIMBited-North Bay Area
Tui Wilschinsky
260 Jessie Street
Sebastopol, CA 95472
707-829-8212
Touch of Love (for children)
Maria Foster
543 E. Arrow Hwy. #43
Azusa, CA 91702
800-493-5462
Central CA Amputee Education Group
Liz Zemke
233 E Portland Avenue
Fresno, CA 93720
559-432-6035
559-284-8417
Stumps ‘R Us
Dan Sorkin
2109 Skycrest Drive #1
Walnut Creek, CA 94595
925-952-4408
Amputee Support Group
VA Long Beach Health Care System
Beth Yetzer, EXT 5924
5901 E 7th Street
Long Beach, Ca 90822
562-826-8000
Joe Kennedy <joseph.kennedy72@verizon.net>
FL USA - Saturday, August 05, 2006 at 21:54:35 (GMT)
Good Afternoon,
My mom recently had all five of her toes on her right foot amputated. She has had her ups and downs but is still depressed more often than not. Does anyone know of a support group that she can join in the Los Angeles area?
Thank you!
Cherie <Cherieam14@msn.com >
Los Angekes, CA USA - Friday, August 04, 2006 at 23:50:30 (GMT)
Does anyone know of any names of Prosthetic Clinics in New Mexico?
Thanks
Mark <LavaMana@aol.com>
NM USA - Wednesday, August 02, 2006 at 20:37:49 (GMT)
Does anyone know of any names of Prosthetic Clinics in New Mexico?
Thanks
Mark <LavaMana@aol.com>
NM USA - Wednesday, August 02, 2006 at 20:36:26 (GMT)
I'm hoping you can assist me with a question I have.
I am living in Australia and will be visiting New Jersey this month for an extended holiday (around a year).
I am an above-knee amputee who has had little luck with prosthetic leg fittings in my two years of trying. I am hoping to get fitted for a new leg while in the USA.
I need to withdraw the required funds to pay for the new leg from my superannuation (retirement) fund, but to do so I am required to submit a quote of approximate costs to pay for the leg.
I have told my fund that I anticipate the cost to be between $10,000 and $15,000 depending on the components used however this is not sufficient and they require something in writing from an 'official' prosthetist supplier or organization.
My question is, can you advise me on how I can obtain a quotation for the cost of a new leg? It doesn't have to be something written in stone as obviously I'll need to organise for consultations once I arrive in the USA.
Sincerely
Liz Charlesworth <bluemoonllama@yahoo.com.au>
Australia - Wednesday, August 02, 2006 at 20:22:46 (GMT)
Dear Leigh...Once you are fitted with a comfortable Prosthetic device and have completed physical therapy, you will find that life goes on with very little change.
Attitude is EVERYTHING!
If you live in the San Francisco Bay Area I can recommend a fantastic Certified Prosthetist that specializes in a PERFECTLY fitting socket.
If not...
Your Orthopedic Surgeon should be able to steer you in the right direction. If he can't, the ACA (Amputee Coalition of America) can. www.amputee-coalition.org
Please E-mail me your USPS address and I will send our Stumps 'R Us InfoPak. You will love it.
Hang in there. It does get better!
DanSorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Friday, July 28, 2006 at 21:52:54 (GMT)
I have been reading the guest book and I think I have found the place from which to get my therapy. I am 37, female, in the hospital, and am going to have my right foot amputated in three days. I'm scared, nervous, anxious, okay ... then not okay.
Please talk to me.
Thanks!
Leigh Paschen <leighpaschen@yahoo.com>
USA - Friday, July 28, 2006 at 21:37:37 (GMT)
With Deepest sympathy to a fallen fellow amputee. Rest in Peace.
Carl M. Brashear, 1931-2006 the son of a Kentucky sharecroppers became the United States Navy's first black master diver in 1970. His story was brilliantly told in
the 2000 movie MEN OF HONOR starring Cuba Gooding, JR and Robert DeNiro.
Navy Master Chief Carl Brashear died Tuesday July 25th, 2006 in Portsmouth, Va. He was 75.
Joe Kennedy <joseph.kennedy72@verizon.net>
FL USA - Thursday, July 27, 2006 at 20:17:22 (GMT)
I am a 38 year old left AK female amputee. I have been an amputee since the age of 3 so most of this is nothing new to me.
I am currently looking into revison of my stump.
Here is my situation, I am 5 feet tall, in good health. I am very active. I feel that last three prosthesis I have had reduced my moblility.
(I feel I should have maintained the mobility I had if not gained more moblility)
The reason that I am seeking revision of my stump is that there is a large amount of loose skin on my residual stump and hip. Which requires that my prosthesis be made to accomodate the extra mass, (which makes donning more difficult and i feel it also interferes with my gait) I must wear plus size pants to accomodate my hip and prosthesis. (My sound side is fit and toned and If not for the left hip and thigh I would wear a size 5.
I have not seen a doctor concerning my amputation other then my General Practioner.
Several years ago he referred me to a Plastic surgeon in an attempt to revise my stump. This plastic surgeon removed only a pocket of skin on my inner thigh (which has come back to ill fitting prosthesis') stating that he could not remove anymore then he did due to blood vessels. I was very disappointed that i went through all of this and it kept me out of a prosthsis for 8 weeks for no good reason.)
I also have a very long stump which makes fiitting a knee difficult as well, I currently I have a 4bar knee, which extends far enough beyond my sound knee that I must sit a bit an angle to drive (It butts into the dashboard) when sitting I must sit on the edge of a chair to allow my foot to touch the floor.
(Now this is where the prothtist said "We all have to make accomadations") I think try accomodating that into everyday life, Movie theatres, buses, taxi's, my own car... This is not what I consider enhancing my life.
I have always been active, Swimming, Horsrback riding, Aerobics, Karate, 4 wheeling, just to name a few.
I suppse my question would be, What should I look for when seeking out a doctor to do the revision surgery? Should I even consider having the stump shortened?
Mechele <BryteEyez@aol.com>
USA - Wednesday, July 26, 2006 at 13:17:04 (GMT)
Janice Ragan in Indianapolis, IN...Go back to the Certified Prosthetist that created your above the knee prosthetic device. He (or she) should be able to correct your walking so that you don't need two canes.
There is no reason why you can't drive a car either. You may need a simple device that moves the accelerator to accomodate your good leg. Your prosthetist should be able to point you in the right direction in Indianapolis to accomplish this simple installation.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Sunday, July 23, 2006 at 01:49:45 (GMT)
I am a left leg above the knee female 58 yrs old. I need help with my new prosthetic leg. I can't walk with it without using my canes.
I need someone to show me how to walk.
I can walk around in my house but not out side. I live in indianapolis and I really need help.
I hate staying inside all the time, and now i can't drive so that makes it harder. So please help me.
Summer is just about over and i would love to do something.
Janice Ragan <jragan316820@sbcglobal.net>
Indianapolis, IN USA - Sunday, July 23, 2006 at 01:42:34 (GMT)
Dave...You have a lot of stuff going on.
Is the socket comfortable and stable? The rotator Otto Bock has is pretty good, and has an adjustment on the bottom.
Is this set for the least resistance? The rotator should move the same amount in each direction.
The foot should be flat on the ground.This would be an alignment problem. Why did you let them put it together like that?
Go back to your prosthetist and ask him to fix this.I would guess that if your leg is long enough that one knee sticks out, there is not a lot of room on the end for substitute products.
I do not know how tall you are. Do you use mode 2 set for golf ? It is always nice to have a foot with a nice soft heel and a spring for a toe. I will bet you don't see much movement at the foot when you press down on the heel maybe like a 2X4.
Your Certified Prosthetist can easily fix this!
C.P. Wayne Koniuk <limbart@sbcglobal.net>
San Francisco, CA USA - Saturday, July 22, 2006 at 10:26:41 (GMT)
I am a right leg above knee amputee who is an avid golfer. Currently I have a C-leg with the ossur seal in suction liner and the luxon foot. There is a rotator on the leg but it moves a limited amount towards the the rear and practically nothing forward. Also I find that when the ground is level there is nothing that keeps the foot level. The toe of the shoe could be off the ground.
With that background I was wondering if the Total Shock is a solution to my problem.
That is I can get sufficient rotation out of my amputee side hip in both directions and the vertical compression might help push down my foot. In normal walking it does not twist all over the place. I have a long stump and my knee sits low compared to my normal one.
Also it appears if I decided to switch feet (which Ottobock discourages) would the ceterus foot work with the C Leg and its weight sensors?
Any Recomendations?
Dave Lovullo <dlovull1@rochester.rr.com>
Rochester, NY USA - Friday, July 21, 2006 at 13:50:23 (GMT)
You are invited To Take A Carnival Cruise With A Group Of Amputees!
The CRUISE Will be porting out of Tampa on 10/23/2006. It will be a 5 day western Caribbean cruise on the Inspiration Ship thru Carnival cruise lines.
The ports of call inclue Tampa/ Grand Camen Islands/ Cozumel/ Tampa
http://www.carnival.com/ or Contact Sergio @ (800)819-3902 Ext 48415
Keep in mind it was to difficult to orginize a group with deposits and proper head count so if you want to go the booking is up to you.
You may reference me, Joseph Kennedy, to insure that you schedule the right cruiseline and proper date. I sincerely hope you can make it.
Message me back or call if you have any questions
Joe Kennedy (813) 969-0546
Joe Kennedy <joseph.kennedy72@verizon.net>
Tampa, FL USA - Thursday, July 20, 2006 at 04:58:47 (GMT)
Hi,
I'm doing some research for my girlfriend who is helping disabled kids in India. One child has no arms, and she is trying to find a way to teach him to type. I was wondering if you had any techniques or know of who I can talk to about different ways of teaching her student to type.
They can not order any unique devices or keyboards because it is a poor group. Any advice would be most helpful.
Thanks for your time
Lee Orrison <lgorrison@gmail.com>
USA - Monday, July 17, 2006 at 13:05:33 (GMT)
Gary Graham...You certainly qualify as an amputee in my book.
There are lots of things you can do to relieve the phantom pain OTHER than narcotics. I use self hypnosis...easy to learn. You can also use a very snug glove that places pressure on the tips. Your Certified Prosthetist should be able to help with that.
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Monday, July 17, 2006 at 13:01:02 (GMT)
I lost 4 fingers on my left hand on July 7th, and so far have found that other amputees, hardly even consider me as an amputee, and rarely offer any support.
little finger - Proximal Inter-phalangeal joint amputation
ring finger - Proximal Inter-phalangeal joint amputation
middle finger - Distal Inter-phalangeal joint amputation
index finger - Distal Inter-phalangeal joint amputation
here are my issues..
little finger -
problems with the nerve endings along the whole residual finger
(bottom only). the "stump" can be moved and can take presure at the
end, but any grasping actions causes the nerves to fire.
ring finger -
major problems with the nerves.. the finger was a real mess, so
when it was sewn up there was a gap of about 2mm where the skin was
not closed despite tight sutures. in this gap is where one of the
nerve endings ended up, so it's attached (adhesion) right to the
scar tissue. I cannot take any pressure to the bottom of residual
finger (just like the little finger). another problem is I cannot
move the "stump" more than a few mm, not due to pain, it just cannot
move back or forth, as if the muscles were not attached.
middle finger -
problems with the nerve endings being to close to the stump, plus
little to no padding for the bone. very very difficult to move the
Proximal joint. takes several minutes to get it to move at all, and
when I can move it, it's largly not in a functional fashion. bending
the joint tends to fire the nerve endings.
index finger -
problems with the nerve endings being to close to the stump, plus
little to no padding for the bone. very very difficult to near
impossible to move the Proximal joint. it's largly not functional
and as such I cannot use the full length of the "stump". bending the
jo int tends to fire the nerve endings.
just to make it clear. In addition to the above I also have phantom
pains, which feels nothing like the nerve endings..
currently (due to the above) I have little use of the hand.
I checked on finger prosthetics so I could regain some use of my hand, but after an $8000 to $17,875 quote range (I also talked to the makers of X-Fingers) but because I have no insurance I have no ability to regain much functional use of my hand without prosthetics, so right now I just wear gloves.
questions....
has anyone delt with this?
is it normal?
will it go away, or is surgical intervention required?
note: I saw the DR today, and he was of no help at all, just filed
it under phantom pains.
opinions, thoughts??????
Gary Graham <burned@centurytel.net>
WI USA - Monday, July 17, 2006 at 12:56:24 (GMT)
Karen...My friend Dan Sorkin of SRU forwarded me your below request.
I will assume that your friend is not a US citizen and does not qualify for Medicaid funding.
Unfortunately we can only provide donated prosthetic components to licensed or certified prosthetists (prosthetists aren't required to have either in New Jersey), who will sponsor amputees who have no funding.
If he (the prosthetist) was to request an application from us we may be able to provide a donated Mauch unit (if we have one) for him to install for a tax deductible donation to the Barr Foundation.
No warranty or representations on the unit will be made.
Anthony T. Barr
President
Barr Foundation
www.oandp.com/barr
www.ErtlReconstruction.com
Tony Barr, President The Barr Foundation <t-barr@t-barr.com>
Boca Raton, FL USA - Wednesday, July 12, 2006 at 00:32:58 (GMT)
Hi,
My name is Karen from Hackensack, NJ. My good friend and business partner, Ahmed has been a right leg AK amputee for about 23 years.
Unfortunately, he has not had insurance or financial resources to replace his prosthesis for a number of years and has been making it functional on his own for some time.
The leg recently failed and is not usable without a new mauch unit. I was wondering if there were any known ways to find people selling or giving away used prosthesis or their components. We found a few people selling on eBay but nothing has worked out so far.
Thanks for any help.
Sincerely
Karen <kjwimmer@netzero.net>
Hackensack, NJ USA - Tuesday, July 11, 2006 at 20:23:16 (GMT)
Hello! It me again, Lilie and I know it has been awhile since my last email.
I found out today that I have to have a LBK amputation. I have been fighting with my heel for three and a half months.
I lost the battle once again.
I became a RBK just last year in June of 2005. I am scared and have many questions with no answers. I need to speak with people who know what I am going through so I came here.
My email address is LRoonikins@aol.com and when you email me feel good about talking on the phone. Please feel free to let me know.
I live in the San Francisco South Bay and I really don't have much of a support group. I can use all the support and friends I can get.
I hope I will be hearing from some of you soon and hopefully talking on the phone and maybe even someday meeting each other.
Unless you have gone through it you really don't understand. I am in great need of amputee friends. If and when you email please put the words "Fellow Amputee From Stumps R Us" that way I won't delete it because of a new address.
Thanks and I hope to hear from someone soon.
Lilie <LRoonikins@aol.com>
SFO South Bay, CA USA - Saturday, July 08, 2006 at 14:23:27 (GMT)
Dear Lynn...I felt the same way initially.
I felt that the whole world would look at me as disfigured, ugly, sexually unattractive. I decided that I didn't want to live in fear of what other people thought of me. I took a deep breath and asked a girl out on a date, stating up front that I was an amputee.
I was stunned by the response.
She was intensely interested in what amputation was like and could she help in some way. A year or so later after dating a lot I married another woman.
To my surprise & delight I was not looked upon as some kind of side show freak. I was a man with an interesting story to tell.
Jody & I have been married for 25 years. I find that today I am a better, more caring, compassionate person BECAUSE of the amputation. I founded Stumps 'R Us to pass on that insight.
Take a deep breath and get back into the dating game. If you do find a "man" that is repelled by your accident, be assured you have just eliminated a loser. He would have been a loser whether you had a leg or not.
Eventually you will find someone that will equal your own high standard.
Good hunting!
Dan Sorkin <DanSorkin@gmail.com>
San Francisco, CA USA - Saturday, July 08, 2006 at 13:16:05 (GMT)
In reply to Joe Kennedy’s question about amputees in the Military, I would like to raise a few points.
First of all, it is not automatic that amputees get to stay on active duty. It is done on a case by case basis that requires a waiver to stay in.
A lot of people don't get to.
In most cases, the people that do stay go to training jobs or support jobs, not combat positions that unfortunately still remained closed to most amputees. The people that stay in have already “paid their dues” so to speak in the operations side and can continue their career training others. The service has also already invested a lot of money training the individuals, so they are getting something in return. The military is not going to take someone in right off the bat that cannot fill a deployable billet. It would not be fair to others who have to go in their place.
In the case of the Air Force pilot, his name is Andrew Lourake, and he is a Lt. Col, not a Lt. He was an instructor/ evaluator C-5B Galaxy pilot before his dirt bike accident, and now flies C-20B Gulfstreams out of Andrews AFB not Air Force one. It took him six years of paperwork to get back in the pilot seat, and he will never fly what is known in the Air Force as a major weapon system again. Its another case of him already being trained and already given years of service. They would never let him fly an ejection seat aircraft such as a T-38 that he had to in Air Force Pilot training. As a side note, he and his wife are peer visitors and a great source of inspiration to new amputees at Walter Reed and Bethesda hospitals in the D.C. area. I have the honor of having gotten to know them during my nearly year long stay out there.
In my case I was a C-17 loadmaster with 19 years and over 6000 flying hours when I was run over by an errant teenaged driver. I had a left hip disarticulation, and there was no way I could ever perform my job safely again, prosthetic or not, nor would they spend the money to retrain a retirement aged NCO.
People get turned down for service for many reasons far less severe than amputations. It usually comes down to having to draw a line somewhere that makes sense both finacially and for the saftey of others.
It may not seem fair, but it is logical in my view.
Ed Donnelly, MSgt USAF (ret) <itsed65@yahoo.com>
Point Richmond, CA USA - Friday, July 07, 2006 at 19:43:51 (GMT)
Lisa Murray...It sounds as if your socket needs adjustment. Your Certified Prosthetist should be able to offer immediate relief with a minor change in socket size.
It should be as simple as that.
Please let me know if this was helpful
Good luck!
Certified Prosthetist Wayne Koniuk <limbart@sbcglobal.net>
San Francisco, CA USA - Friday, July 07, 2006 at 12:03:16 (GMT)
This is a copy of what I wrote in my own Online Group and was curious as to what kind of feed back I would get from this Group
Here is the question of the year.
I have been involving this topic and myself with the US Congress in my efforts to return to the Military. The Military has issues that concern me about amputees and the military . I don't really know specifics but I know there haves been a few amputees that returned to active duty that were in the military at the time of their amputation.
If you lose your leg or arm while in the military you have the option of staying in however, if you get out or have never been in being a amputee is a automatic disqualification.
I feel that that is a double standard with a double-edged sword.
There is a Lt. Andrew Lureg, an above knee amputee who pilots air force one and other aircraft that carry the President and other top dignitaries. He lost his leg to a ATV Accident NOT Combat related but was still in the military.
To me that makes no sense whatsoever whether you lost your leg while in or out of the military should have no bearing on whether you can perform the job minus a leg.
Can anyone explain the logic behind this policy if you can pass the same battery of tests I don't see why it should make any difference - in fact I would think that it borders on being discriminatory. You can be an amputee in the military. You simply can't join if you are on!
Where is the logic?
Joe Kennedy <joseph.kennedy72@verizon.net>
FL USA - Wednesday, July 05, 2006 at 14:13:42 (GMT)
Lisa...Biofine is a prescription lotion used for radiodermititus and 2nd & 3rd degree burn patients. You should probably see your doctor (I would think), but the lotion may help with the pain from the burns, and assist that the tissue recover properly.
Joseph Feigon <jfeigon@urizel.com>
San Francisco, CA USA - Wednesday, July 05, 2006 at 02:43:35 (GMT)
Hi Lisa...I saw your post on the Stumps 'R Us message board and thought I'd get in touch.
My name is Keiron McCammon, I lost my left hand due to electrical burns after a sports accident back in Feb. Whilst I'm just starting the process of getting my first prosthetic I thought I might offer some suggestions since I also had an open area at the end of my stump and on the grafts on each of my legs.
I used Bacitracin Zinc Ointment as an antibiotic to keep infection at bay but also used Regranex (becaplermin) Gel:
http://www.regranex.com/home.jhtml?mi=1&_requestid=2354711
This gel was used quite extensively whilst I was undergoing treatment in Miami after my accident to promote granulation of the remaining tissue on my arm and leg...and it certainly seemed to work well for me. I did have the luxury that I could give it time to heal and I would imagine wharever you try, giving the area time to heal without a prosthetic will be key.
I've also been using Mederma on my scars and skin grafts:
http://www.mederma.com.
This is a silicone gel that has helped soften my scares considerably. It supposedly works even a long time after the scars have healed. I have a twice daily ritual of using vitamin E oil, a coco butter based topical body & hand lotion and Mederma. I then also have Jobst compression garments that I wear. All this seems to be working well for me.
Hope this helps and good luck.
Cheers
Keiron McCammon <kmccammon@gmail.com>
Danville, CA USA - Tuesday, July 04, 2006 at 23:46:59 (GMT)
Hi Dennis...I just saw your post on the Stumps 'R Us guestbook and thought I'd pass along the following link:
http://www.oandp.com/products/trs/sports-recreation/canoeing.asp
I've been doing research into prosthetics after losing my left hand below the elbow back in February.
TRS seem to have some good solutions for different sports.
Cheers
Keiron McCammon <kmccammon@gmail.com>
USA - Tuesday, July 04, 2006 at 23:03:08 (GMT)
Lisa Murray...Unfortunately it is times like these that you need to pull your stump out of the Prosthesis to let the wound heal completely.
There is a topical very strong antibiotic called bactraban or muproxin 2%. It is excellent for speed healing if in the worst case scenario you absolutely have to protect that area from friction.
Your Certified Prosthetist should have a item called 2nd skin.
it is a moistened lubricated pad to help cushion the blow.
If it starts to spread or gets larger see a Dermatologist ASAP.
Good luck!
Joe Kennedy R/BK <joseph.kennedy72@verizon.net>
FL USA - Tuesday, July 04, 2006 at 13:39:14 (GMT)
Hello,
A tractor trailer driver fell asleep at the wheel and unfortunately hit my car and my gas tank exploded.
I lost the right BKA due to 4th degree burns and osteomyelitis, so being an amputee is challenging but buying or getting a prosthesis comfortably on burnt skin, is a real challenge.
I have gotten a small open area at the distal end of the stump and cannot heal this. The pain is intense at times.
Any suggestions?
Please do not suggest to take it off and let it heal. I am a single mom of three grade school kids. I have been an amputee for 16+ years and I am a nurse. I have been using cortaid around the open area due to itching and I cleanse the site with normal saline and triple antibiotic cream but the pain issue...I need something topical to help the area.
Please any suggestions?
Lisa Murray <lisamurry1@verizon.net>
USA - Tuesday, July 04, 2006 at 03:35:12 (GMT)
Amy,
I read your post on the bulletin board online.
I also live in the Phoenix area and have been very
pleased with the physical therapist at Baptist Hospital.
Her name is Sharon Hayden and her specialty is amputees.
The phone number is 602-246-5766.
Good Luck!
Janice Hoenscheidt <butterfly123@cox.net>
Phoenix, AZ USA - Wednesday, June 28, 2006 at 12:56:00 (GMT)
Amy Raimondi in Phoenix, AZ....The injections help that is if you are refering the lumbar sympathetic nerve blocks what the injections do from my recolection is trick the severed nerves at the amp site into thinking that the leg/arm is still there therfore the impulses are much slowered and calm and will regrow under Calm conditions i have a series of 8 2'x a week foe 4 weeks every two years People may think its hokie but I get phantom pain and sensation maybe 5-10 minutes once a month I can deal with that
None the less don't quote me on anything here but definately bring it up to your Doctor.
Joe Kennedy <joseph.kennedy72@verizon.net>
FL USA - Sunday, June 25, 2006 at 22:28:28 (GMT)
Amy Raimondi in Phoenix, AZ....For an Amputee Physical Therapist in Phoenix contact the Amputee Coalition of America www.amputee-coalition.org/ for assistance.
About the Phantom Pain...I would suggest a revision surgery performed by an ERTL trained Orthopedic surgeon. The ERTL Procedure buries the nerves, ligaments, etc, in the soft tissue protecting them from further trauma.
A listing of ERTL trained surgeons in the United States can be found by searching the ERTL information on page one of this web site.
Dan Sorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Sunday, June 25, 2006 at 14:32:58 (GMT)
I am hoping someone can help me! I am recently engaged to an amazing man who is an above the knee amputee. The procedure was done 2 years ago, however he still experiences a great deal of pain in the stump. He has tried all of the pain medication the doctor has given him (morphine, Perkiset (SP?), but nothing seems to help. We have looked into botox injections and have a consultation for that next week, but I am wondering if anyone out there has any suggestions.
Also, he would like to work with a trainer to rebuild some of the muscle strength he has lost, but can't find anyone in our area who has experience with amputees. We live in the phoenix area. If anyone has the name of someone with experience I would be so grateful to hear from you. Thank you for your time and help.
Amy Raimondi <watchbuggies@hotmail.com>
Phoenix, AZ USA - Sunday, June 25, 2006 at 14:21:15 (GMT)
Terry Brandeberry...Silipos has what you need. It is a Gel lined elastic finger tube. It will sew up the end and also protect against sensitivity.
Certified Prosthetist Wayne Koniuk <limbart@sbcglobal.net>
San Francisco, CA USA - Friday, June 16, 2006 at 03:53:39 (GMT)
I feel kind of silly asking questions as my amputation is hardly of the magnitude that many of you readers are relating.
November 2005 started me on my path to having my left middle finger amputated at the distal phalange. My 8 year old OCD/ADHD son was in the wood shop with me where I was ripping boards to put a new floor in the stock trailer. Something happened outside the shop door and my son who is also tactilely challenged went running through the shop waving his arms. I had no chance. One of his waving arms hit my left arm putting my left hand into the table saw blade.
Fortunately, my ring finger healed perfectly and my index finger while shortened the width of a saw blade healed up just fine, too but my middle finger was a different story. After months of antibiotics to treat resistant staph and e coli infections I finally gave up in the face of Chronic Osteomylitis. Surgery was 5/3/06.
I can say that even the loss of that first joint has totally changed the way and I do things and think about things. Grip strength and reach has diminished, not always a good thing when trying to grab the halter rope of a calf that I am trying to halter break for the kids to show for 4-H. Probably the greatest loss for me is musically. Piano and the keyboards are not such a hardship but guitar and the other stringed instruments that I played I now have to learn to play in reverse. Theoretically it should be easier to do fretwork because my right hand is my dominate hand but I am having a difficult time coming up with chord charts to get me started.
OK enough of that.
I have been having continued swelling at the distal end a burning sensation that is pretty constant. Someone suggested that compression bandages might be helpful. Someone else told me to keep it in a splint because the swelling might be due to the fact that I am pretty rough on my hands when working on the farm. Someone else suggested using the rubber fingertips people use when sorting papers. I have tried some of those but they are all too tight and make the burning worse.
Eventually, I would like to have a prosthetic finger made to regain the lost length for playing keyboards but since we do not have insurance it won’t be for some time.
Do you have any suggestions for how to proceed?
Terry Brandeberry <tdbrandeberry@gmail.com>
Siloam Springs, AR USA - Thursday, June 15, 2006 at 21:32:08 (GMT)
If it were me I would opt for an ERTL Amputation below the knee. Page one of the web site has links and information about the ERTL procedure and the doctors qualified to practice the procedure. The ERTL surgery creates a bone bridge connecting the remaining bones at the tip of the amputation and buries the nerves, ligaments and other residual parts in soft tissue all but eliminating neuromas and phantom pain.
We have several members of Stumps 'R Us who have had the procedure done with amazing, positive results.
Dan Sorkin <DanSorkin@comcast.net>
San Francisco, CA USA - Thursday, June 15, 2006 at 02:55:04 (GMT)
As I have experienced some complications with a 26 year old stump, I am looking for some help in making some treatment choices.
I have been surfing the web, and discovered your site.
Here is some of my background, and if there is someone that can help, I would appreciate the help. I will try to be brief, but still provide some background.
September 24, 1980 was the date I lost my left foot in a grain auger, at age 30. I have lived with a Symes Amputation from that time forward.
I'm 56 years old now.
Currently I am experiencing some degradation of my stump pad (distal end).
(In a Symes, it had formerly been the heel tissue.) An area that had always been a thick callous and scar tissue blend has cracked open, and is causing severe discomfort. The initial opening and seeping started in March '05, and gradually healed up by October '05. However the callous and crack was continually present, and then reopened in February of '06.
The opening/crack has evolved to become very tender, and am at a point where the pain is not very tolerable. The skin surrounding the open crack seems to continue to deteriorate as well.
I have a very supportive orthopeadic surgeon, but his suggestion is to "chop off" the stump and start over. The prosthetist I visit advocates a new silicone lined prosthesis, and believes my stump will heal due to a better fitting socket. (I've lost 30 pounds in the last 18 months by dieting and exercise so my old prosthesis has become less of a fit.)
Basic question and request would be----are there any professionals that have worked with similar situations/cases?
Almost everything I read or have connection with are about more recent amputees and their challenges. I would think that if there are some veterans of earlier experiences that can give me some insight, it would be very beneficial.
Please call or email and possibly we can discuss.
Thanks!
Dave Paschold
1687 Woodsview Street
Lincoln, NE 68502-4650
402-423-0308 office
402-239-6947 cellular
dlpaschold@agriliance.com
Dave Paschold <DLPaschold@agriliance.com>
Lincoln, NE USA - Thursday, June 15, 2006 at 02:45:35 (GMT)
I would like to post to the Stumps R Us GUESTBOOK the following question:
My 15 month old daughter was born missing her right arm from the elbow down. She is currently using a passive prosthetic and is doing wonderfully.
Unfortunately, our prosthetist is moving out of state.
Does anyone have any recommendations for a prosthetist on the SF peninsula? We live in Belmont, so we are preferably looking for someone between Sunnyvale and South San Francisco who has experience in pediatric upper extremity prosthetics.
Thank you for all of your help!
Andrea Canavero <gcanavero@yahoo.com>
Belmont, CA USA - Tuesday, June 13, 2006 at 17:00:20 (GMT)
Hi there!
I'm a former motorcycle racer who got to enjoy my RAE in September of 2005 when I was pushed off the track into a steel guardrail. Anyhow, it's time to get more active again, and in addition to adapting my motorcycles I'm looking at taking up kayaking.
While my prosthetist is helpful he's not the most imaginative, and I'm having trouble figuring out how to hold a kayak paddle!
Any suggestions on how to get this paddle to work would be a big help.
Thanks in advance
Dennis C. Blue <bluedogz@comcast.net>
USA - Sunday, June 11, 2006 at 04:30:38 (GMT)
Hi Tanya McCabe...I am a LBKA (May 03) and also wear the Harmony Vass system. I wear a nylon sock under my liner to absorb moisture and it works very well. The sock will not interfere with your skin in any way, and you will still get good suction.
I live in Arizona where the temp's right now are over 100. It is very important for me to be able to wear the prostethic from morning to night.
I also play golf, and usually don't have any 'water' problems before I finish.
If you have any questions you can e-mail me directly. Good luck to you.
Gene Robison <hgrobi@yahoo.com>
Sun City West, AZ USA - Friday, June 09, 2006 at 23:02:00 (GMT)
Thanks for your antiperspirant help, Wayne and Joe! I really appreciate it. My prosthetist has ordered it for me.
Have a great day!
Tanya McCabe <dangergirltm@hotmail.com>
USA - Thursday, June 08, 2006 at 22:02:43 (GMT)
Tanya McCabe...Please ask your prosthetist to order some from ALPS. They have specifically formulated one for amputees. I have given this to many people and it is successful about 80% of the time. The prosthetist should know ALPS.
Certified Prosthetist Wayne Koniuk <limbart@sbcglobal.net>
San Francisco, CA USA - Thursday, June 08, 2006 at 13:26:49 (GMT)
Hi,
My mother lost her left arm several years back due to a car accident. She also suffers from a balance problem due to an earlier stroke. Needless to say, when she walks she has trouble staying upright.
I have seen a walker called hemi-walker for one handed folks. Does anyone have any experience with these kinds of walkers? Are they any good? Can you suggest something better?
Thanks is advance for your help.
Patricia Canada <pcanada@sbcglobal.net>
Fremont, CA USA - Tuesday, June 06, 2006 at 19:43:53 (GMT)
Tanya McCabe Portland, OR USA ~~~~~~~~Your Prosthetist should be able to order this for you thru ALPS ATP-008. It is an Antiperspirant Spray with aluminum Chloride. Or you can ask your doctor to write a Rx for Aluminum Chloride and Dilute it with a little water in a dollar store spray bottle.....
Hope this helps Joe
Joe Kennedy <joseph.kennedy72@verizon.net>
FL USA - Tuesday, June 06, 2006 at 19:20:46 (GMT)
Hello, all. I'm a BKA who is fortunate to have a vacuum-system prosthesis which I got last fall (amputation was 3 years ago - end result of an old skydiving accident).
I love the system.
However, now that it's getting warmer, I can only walk a few blocks before I have to stop, take my leg and liners off, pour off the water and sop up my leg & liner with a towel.
Annoying.
I asked my prosthetist if I could wear a sock of some sort between my leg and the inner liner, but it seems that the suction system is so efficient that the fabric would become slightly embedded in my skin and that it's a solution for only short periods of time.
My prosthetist recommends that I find an antiperspirant spray without deodorant or aluminum. Does anyone
have any recommendations? I'd like to hear how the rest of you deal with this problem.
Thanks!
Tanya McCabe <dangergirltm@hotmail.com>
Portland, OR USA - Tuesday, June 06, 2006 at 02:07:02 (GMT)
scott --- i guess that's your name as you didn't sign your post.
tie shoes can be a challenge, a challenge i avoid since I don't have any hands either.
in my running shoes i just tie the laces in knots and cut the extra laces and slip them on like loafers. usually the laces are nylon so a pass thru a flame seals the nylon forever. a drop of super glue will help hold the knot.
loafers are the best. being a beach / boat guy sperry topsiders are perfect.
elastic laces are available which help converting tie shoes to loafers.
to better secure the knots have someone show you a simple 'surgeons knot.'
socks none, if its very cold, the white ankle hi sports socks work well. use which works best for you.......
good luck
Mike Penketh <PittsS1@aol.com>
Vacaville, CA USA - Wednesday, May 31, 2006 at 21:38:20 (GMT)
I had posted in December 2005 when I realized I had had an amputation only mine was at the top of my leg -- total hip replacement. The second was replaced 4 April 2006.
I had not walked unaided in 10 years. Much of this time was in a wheelchair.
I was unprepared for the first surgery and spent 5 1/2 days in the hospital and 7 days in rehab.
I started working HARD in the gym and pool and continued to lose weight. For the second hip I was in the hospital less than 96 hours. Within three weeks of being cleared for weight-bearing I am walking without even a cane.
I continue to spend 2 hours in the gym and pool (most recently 1,000 yard freestyle in 26 minutes).
I had huge osteophytes (bone spurs) around the hip joint and my surgeon sent me for one radiation treatment on the second post-op day after each hip.
We all need to share our experiences as there is a wealth of knowledge and wisdom amongst us.
Dr. J. Curtis Kovacs, Stumps 'R Us Life Member <KOVACS2@COX.NET>
Sun City, AZ USA - Tuesday, May 30, 2006 at 02:16:42 (GMT)
I'm very happy for you, Lorraine!
An awesome Christmas gift!
I had quite severe nerve and muscle pain 24/7,
especially in my "foot". The Lyrica has quieted the pain at least 50%.
I have taken MANY medications over the years, pre-amputation and post-amputation, and all of them have had side effects that I wasn't willing to put up with. I wasn't taking any pain medication before I started the Lyrica, and I was miserable.
I have virtually no side effects with the Lyrica. I was taking the highest dose possible for a few months, but I've had a revision surgery which has helped a great deal, and now I've cut back on the Lyrica.
When I was on the highest dose, I did experience a bit of lightheadedness and constipation, but it was quite minor.
I hope anyone out there who has given up on finding some relief for nerve pain -- phantom pain -- will give Lyrica a try. I tried many nerve drugs and narcotics prior to the Lyrica, and none of them helped me like the Lyrica has.
Good luck!
Suzanne Duda <SuzanneDuda@comcast.net>
Lansing, MI USA - Monday, May 29, 2006 at 12:40:48 (GMT)
Hi Dan
Last visit to our family doctor he told me about a new medication, Lyrica, a Diabetic Neuropathy aid.
He asked if I would try it and gave me a sample.
You take it two times a day. It doesn't take effect for a week.
I let you know years ago that I had a bad surgery that left me with some problems that prevented me from walking any distance . Lots of pain.
This medication has worked like a small miracle taking away the pain caused by the loose flesh at the bottom of the stump. There is no cure for the pressure on the tibia that was left without any protection nor the bones on the right of my leg that also get pressure.
I believe a trip back to my prosthetist will take care of that and I will be able to get around for a longer time than before.
This new medication has done miracles for me-- I am actually able to stand at the stove and prepare a meal without extreme pain that caused me before to have to sit and remove the prosthesis altogether.
I am able to get around with my cane instead of the wheelchair and I have been walking down our hall without using the cane. So you can imagine how thrilled I am to have found something to allow me to do these things.
I am sending this message directly to you because I know you scan your incoming mail. This stuff may not work for others who experience the kind of pain it is meant to relieve.
The only side effect, so I was told, might be nausea. I experienced nothing but good things.
God Bless you and the good work you do.
Lorraine Skiles <lorskile@fidnet.com>
Union MO, USA - Sunday, May 28, 2006 at 02:34:09 (GMT)
I have an online group as well on MYSPACE for anyone who would like to join. As moderator of the group I ensure that the people and or persons joining are in fact an amputee, friend/family of or practitioner.
The forum is open much like the stumps R Us GUESTBOOK. The people there are genuine to my knowledge.
The group is marked as private because of the group's content and sensitivity. As most of you know there are several folks out there trying to take advantage of persons with disabilities either pretending to be one or wishing they were.
As a courtesy please post a little about yourself as to your interest to the group once you join in the profiles section or in your own profile. The reason I ask is to protect the integrity of the group by scanning each new member.
Hope you have a great Day.
http://groups.myspace.com/gimpie72
Joe Kennedy <joseph.kennedy72@verizon.net>
FL USA - Thursday, May 25, 2006 at 17:13:42 (GMT)
In my own amputee support group I am trying to get a cruise for amps. I just got off the phone with the cruise lines in regards to schedule an amputee group cruise to the Bahamas departing from Cape Canaveral in Florida.
It would be the weekend of the 26th of August. In order to get an idea of cost I would need to know how many people might be intrested in going.
Right now the cost is between $290-490 depending on the room and when i can book it.
i need an approximate head count before I can go any further.
Please let me know either way and once i get an idea I will finalize something by June 1st
Joe Kennedy <joseph.kennedy72@verizon.net>
FL USA - Monday, May 22, 2006 at 23:03:21 (GMT)
Hi, I do Occupational Therapy. I know all the text book ideas for transfers etc. in relation to amputees, but I need some "real life" ideas.
I am working with a double amputee that would like to go home again (currently in a care center). The patient has a prosthesis on the Left leg only.
We need some additional cues to increase the ease with toileting & pericare & dressing lower body with toileting. The patient occasionally has a catheter as well so keep that in mind with transfers.
Any addititional ideas would help.
Tara Smith <TaSmith@VOA.org>
Dakota County, MN USA - Monday, May 22, 2006 at 21:19:57 (GMT)
I have written to you before, my name is Liliette (Lilie). I am an R/BK amputee due to diabetes. My husband Roger is my full time care giver and it is taking it's toll on him.
Right now I can not use my leg because there is an open wound on my good heel. And I need to have the leg refitted and can't do so because I can't have pressure on my good foot.
Roger has no one that can relate or understand what he is going through as a care giver. I feel for him but don't know what to do because of my own day to day struggles. I only get out for doctor appointments and feel trapped in the studio apartment that we share.
We have been married of a little over two years now and this adjusting has really worn both of us down., We are both in our mid forties and it seems as life as we knew it is put on hold.
I feel that my husband needs support just as much as I do, He needs someone to talk to that can understand and relate to what he is going through. And to someone who can give him advice when needed, He feels like he has had to give up a big part of his life because of what has happened to me.
If you can help please let me know, Feel free to call me at 408 744-0850 or email me.
Thank you!
Lilie <LRoonikins@aol.com>
USA - Friday, May 19, 2006 at 14:45:45 (GMT)
Leslie...There is no reason why your husband cannot become a Commercial Pilot.
The first step (pardon the pun) is to secure his Private Pilot Certificate by enrolling in one of the many Part 141 flight training academies in the United States AFTER getting a prosthesis fitted that will allow him to successfully operate the rudders and brakes in any aircraft.
His prosthetist can help with that. For flying I use a Peg Leg because it is easier to put positive pressure on the brakes and rudder pedals with it. I use a standard B/K prosthesis with a Freedom Innovations Renegade Foot for walking and switch to the peg for flying.
As a CFII (Certified Instrument Flight Instructor) I have zero problems flying commercially or instructing. I have what is called a SODA (Statement Of Demonstrated Ability) from the local Oakland, California FSDO (Flight Standards District Office). I earned it by demonstrating to an FAA Inspector that I can fly with an artificial limb.
No problem!
If you have any other questions please feel free to ask them.
Good luck!
When once you have tasted flight,
you will always walk the earth with
your eyes turned skyward. For there
you have been and there you will
always be!
...leonardo da vinci 1452-1519
Dan Sorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Friday, May 19, 2006 at 03:11:36 (GMT)
Dan...I just read your article and found it to be very encouraging.
My husband recently lost his right foot in a motorcycle accident. He was in pilot school prior to the accident. His long time dream was to become a airline pilot. He wanted to do that by joining the Air Force reserves. Well, that is out of the question now, since his accident. But now he is depressed and feels as if he can not become a pilot because of this injury.
I see that in your story you became a pilot. Is it possible for him to still become an airline pilot?
Leslie <LeCald1122@aol.com >
USA - Friday, May 19, 2006 at 03:09:07 (GMT)
Dear Dan and Stumps GUESTBOOK readers...I would like to send out a HUGE thank you to all of those that are responding to my plea for help with e mailing your Ertl stories to my work comp carrier,
I am touched by all those that are responding, thank you for sticking with a fellow amputee...
Today is my 2 year anniversary of losing my leg, time really flies. Thank you again and keep sending the emails. I think we may be getting some where!!
Kimberly Peterson <kjanepeterson@hotmail.com>
Oakdale, MN USA - Thursday, May 18, 2006 at 23:15:53 (GMT)
Jeanne Morris~~~~~~~Seeing that you are at the bottom of the hill that gives you the advantage. Walk up to the top of the hill strap on the roller blades say a prayer and away you go.
Usually as most will agree with me on this site when there is associated pains other than the phantoms is usually has to do with a bad fitting socket. Check out having your Certified Prosthetist make the proper adjustments.
P.S
Some Matresses at the bottom of the hill probrobly would not be a bad idea either
Whats the Path?? will power and determination
Good Luck
Joe Kennedy <joseph.kennedy72@verizon.net>
FL USA - Monday, May 15, 2006 at 13:01:53 (GMT)
Hi Dan...I am 46 and have been an amputee for 3 years. I have a goal of roller blading, But am having trouble with my new prosthesis and pain in long hauls.
Trying to quit smoking and need some support. I live at the bottom of a hill.
(Now I feel like a whiner) I am giving it the summer now before I have to think about a scooter.
Help!!!How do I get stronger??
What is the path??
Jeanne Morris <jamiejeanne@sbcglobal.net>
USA - Monday, May 15, 2006 at 00:37:56 (GMT)
Hi...On April 27th of this year I became a L/BKA due to a gun shot wound to the foot that could not be healed. I am new to this way of life and have had serious bouts with depression as well as phantom pains. I have lost everything with this to include my home, job, and wife and kids. The main thing I am looking for is advice on what I have in store.
I am not generally someone who likes to be suprised or just waits to see how things unfold.
At the same time, when this happened I was without insurance so my hopes of getting a prosthetic were diminshed.
A big question that I have is that since the amputation I have problems with bowel evacuation. It causes a painful sensation in my stump. Did the doctor possibly make an error with my nerves, or is this normal?
Any help and advice for my new situation would be greatly appreciated.
Thank you.
Jeff Hall <jd_hall_jd@yahoo.com>
Killeen, TX USA - Sunday, May 14, 2006 at 14:08:52 (GMT)
Hello Everybody...I have a very good friend in Canada who is a Bilateral AK, he is heading to an Appeal court in a fight over the term, "Mobility Aid."
They are having a problem with the wording of his definition of "Mobility Aids." It is now a common phrase used and understood by most, but is not a term that one can look up and find a actual definition.
I have been surfing the Internet looking for a plausible definition of a Mobility Aid, and have not had much luck. Do any of you have something that defines a Mobility Aid, legally or professionally?
The Insurance Network in Canada, is not something that you would wish upon others!
It is very hard to get anywhere once you are injured, you are pretty much "on your own" there.
And here I bitch and cry about Texas Workers' Comp!
I have better "quit whining!"
Thanks
Ted A Snelling
Marketing / Operations
Pioneer Drilling Company
334 Flato Road
P.O.Box 2963
Corpus Christi, TX 78403
(Office) 361-289-9241, Ext 108
(Fax) 361-289-0530
(Mobile) 361-215-5839
tsnelling@pioneerdrlg.com
biguncleted@aol.com
Ted A Snelling <BIGUNCLETED@aol.com>
Corpus Christi, TX USA - Sunday, May 14, 2006 at 13:57:48 (GMT)
Hi Dan and readers,
My name is Kimberly Peterson. I have written several times to your site seeking advice and ALWAYS receiving excellent advice in return, thank you. I am here today not to ask for advice but to ask for a favor of all the readers of this guestbook. I have met some of the kindest people from this site so I hope that your kindness will assist me with my problem.
I have been a RBKA since 05/04. I had my amputation as a self request. I had broken my ankle years ago, never healed properly (even after 9 surgeries) so to rid myself of my useless foot/ ankle and constant pain, I elected to do the Trans-tibial amputation. I found this site before my amputation and used it to gain advice and knowledge of what I was getting myself into and what I was going up against and again, you all provided me with tremendous support.
This site is also where I learned of the Ertl Procedure. Once researching this procedure, I knew it was the ONLY way for me to go. Unfortunately, living in Minnesota, there is not a Ertl doctor near to me. My injury is a work comp deal so I have to follow their steps, policies and procedures.
Work Comp found me a doctor right near me, an Orthopedic doc that is supposed to be "one of the best" I visited him and after a lengthy visit, I made clear that I wished for an amputation utilizing the Ertl Procedure and the Doctor replied that he knew the procedure but didn't know why I wanted it and I was the first of his patients to have asked for it. Anyway very long story short, I went thru the amputation, thinking I had the Ertl. Now, here I am, 2 years and 5 more operations later (due to revisions to rid the bursa sacs that keep re-growing), I find out that the doctor claims he did the Ertl but was proven that he did not do the procedure.
Now, I continue to grow bursa sacks at the tip of the tibia, which are VERY PAINFUL while wearing the prosthesis, 4 neuromas in my stump and an unstable and mis-shapened stump.
So here is my quagmire, I wanted to have the Ertl the first time, and still want it. My work comp carrier is refusing to pay for me to have the procedure. They feel I got an amputation, like I wanted, and that is good enough. I have been to see Dr. W. Ertl recently and he is offering me hope that he can fix my leg and return me to a stump that I am able to function with, unlike the mess of a stump I am stuck with now. My work comp carrier feels that this procedure is unnecessary and thinks I should be satisfied with where I am currently at.
What I am asking from you readers is if anyone would please take the time to e mail my work comp case manager with a personal story or reasons on why this Ertl Procedure is beneficial to an amputee. I have sent them numerous articles and videos on the subject and they don't seem to want to budge. I am thinking that maybe if they get bombarded with e mails supporting this procedure, they may consider it more for me. Basically like a political thing where you write to your congressmen etc. So, if anyone could find it in their hearts to take the time to e mail a short story or reason promoting the Ertl Procedure, I would be eternally greatful and would return the favor to others if asked.
Here is my carrier's information:
CompCost
Attn: Michele Paton
re: Kimberly Peterson
michelp@sfmic.com (her e mail address)
Once again, thank you all
Kimberly Peterson <kjanepeterson@hotmail.com>
Oakdale, MN USA - Saturday, May 13, 2006 at 04:17:01 (GMT)
Bloorview Kids Rehab and the University of Toronto are organizing an international, web-based survey of individuals with upper limb loss. This anonymous survey will provide an excellent opportunity to share experiences and voice opinions. We will ensure that the views communicated will be made known to healthcare providers, prosthesis designers and of course, our participants worldwide through conferences, journals, and public reports. We would be very grateful if you could circulate news of this survey amongst your members or post a link to it from your website.
(www.prismlab.org/survey.htm)
We want to make sure that as many people have access to it as possible.
We hope that the results of this study will lead to improvements in available resources that will directly benefit individuals with upper limb loss.
The survey takes about 20 to 30 minutes to complete and is inclusive of all ages and levels of upper limb loss. Parents are asked to fill out the survey for their children and both prosthesis wearers and non-wearers are
encouraged to take part. It is currently available in English. Spanish, French and Dutch translations will be available in the next few months. If you would like other translations or paper copies of the electronic survey, please let me know. This study has been approved by ethics boards at both the University of Toronto and Bloorview Kids Rehab.
Thank you!
Sincerely,
Elaine Biddiss, MASc
Survey Coordinator
Bloorview Kids Rehab, University of Toronto
Telephone: 1-416-425-6220 x3270
Toll-free: 1-800-363-2440 x3270
Fax: 1-416-425-1634
Email: elaine.biddiss@utoronto.ca
Elaine Biddiss, MASc <elaine.biddiss@utoronto.ca>
Toronto, Canada - Friday, May 12, 2006 at 15:50:15 (GMT)
Hi Jason...My name is Jonas Chladek and we have an orthotic & prosthetic facility in Des Moines, IA. I understand that it is quite a drive to des moines,
however we have patients that travel from as far away as Kansas City and Minneapolis to be seen in our Des Moines location. We can usually make the most of each visit, and often times rapidly produce an item for fitting the same day, which is helpful considering the distance you must travel.
I will include some contact information below..
Unfortunately with any amputation, there are several variables that can affect the overall rehabilitation of the amputee. It is important to consider and eliminate as many of these variables as possible.
This sounds like the scenario your wife has been presented with, and I am truly sorry to hear that she is having to deal with these complications.
The good news is that she is not alone, and you are not without options!
We have had several amputees who have contacted our offices after running into brick walls while dealing with these difficulties.
We will conduct a thorough evaluation to include: Physical condition, prior & current treatment, surgical procedure, prosthetic fitting & device selection, as well as suspension complications. We will discuss all of the possible solutions, provide answers for your questions, and conduct research to find the answers for the questions we cannot answer.
We will work with both of you to designate a plan to make your collective goals become a reality.
It sounds like you have not lost hope, which is exciting to hear from a prosthetist standpoint! We look forward to meeting and/or speaking with both of you.
Sincerely,
Jonas Chladek
Chladek O & P
1300 keo way
Des Moines, IA 50309
515.244.4040
Cell: 515.720.5646
www.ChladekOrthotic.com
www.Phatbraces.com
JONAS CHLADEK <clawmoses@msn.com>
Des Moines, IA USA - Sunday, May 07, 2006 at 15:56:19 (GMT)
My wife lost her leg to necrotizing fasciitis. It is a below the knee amp, but she has uneven skin grafts all the way to her buttocks. She has been fighting with staph and cellulitis in her stump over the past year and a half. Recently they discovered staph in the actual bone of her amped leg and started a pic-line IV antibiotic. That sort of went south and she just got out of the hospital dealing with that. Her orthopedic doctor just told her she should put idea of ever running again out of her mind.
She caught the nec fasc from a bunionectomy to help her have less pain while running, so I'm sure you get the devastating irony.
She is about at the end of this rope, I think. I am looking for a way to give her the sense of running without actually damaging the stump.
She won't be able to wear her pros-leg for some weeks while they try to get this under control, so she is on the hated crutches and wheelchair for a while.
Do you have any suggestions?
I saw a harness type system for people running in pools. Is that something that might work for her?
Thank you.
Jason Alberty <jalberty@zeus.ia.net>
IA USA - Sunday, May 07, 2006 at 15:46:17 (GMT)
For Richard Morgan...Regarding collapsible crutches.
You can get a great set of collapsibles that even come with a carrying case at
http://www.fetterman-crutches.com/
I have the same pair but not with the fetterman add-ons which I would highly recomend. I use a set of custom made titaniums by the same company and can really vouch for their crutch feet and grips as being the best there are.
Hope this helps.
Edward Donnelly <itsed65@yahoo.com>
USA - Sunday, May 07, 2006 at 13:44:33 (GMT)
Please Join Amputees in Motion (AIM) for an Advanced Gait Training Clinic for Lower Extremity Amputees on Saturday, MAY 20th.
This will be the perfect opportunity to train and get in shape for the fourth annual Hope & Possibility 5M on Saturday, June 17th, 2006 (at the ACA Conference) and on Sunday, August 6, 2006 in Central Park organized by the Achilles Track Club (www.achillestrackclublorg).
Who's ready to "AIM Higher" and set some running records? If you need a ride, AIM will be car pooling from NYC. Please call Jeremiah for ride sharing 212-920-1033.
Please call today to register or if you have questions about the clinic:
Contact Todd 631-351-2274.
Hope to see everyone there!
Cheers,
Jeremiah Perez
Executive Director
Amputees in Motion
(c) 212-920-1033
(f) 480-247-4976
(e) jeremiah@aimny.org
NEW WEBSITE: www.aimny.org
"AIM Higher"
About Us: Amputees in Motion is a non-profit organization for people with limb loss interested in activities in the greater New York area.
AIM's mission is to encourage people with limb loss to benefit from an active lifestyle since the loss of a limb can increase a sedentary lifestyle and cause secondary issues.
Jeremiah Perez, Executive Director <jeremiah@aimny.org>
New York, NY USA - Friday, May 05, 2006 at 17:51:47 (GMT)
Do you or any of the other stumps know of collapsible crutches?
I am looking for something I can put in a carry on bag for airline travel to use at the end of a flight if needed, as well as just to keep in the car for emergencies.
I have heard of canes like this but not crutches. Any help would be greatly appreciated.
Thank you!
Richard Morgan <Richard.Morgan@steelscape.com>
WA USA - Friday, May 05, 2006 at 14:59:51 (GMT)
Connie in Newman, GA...As Dan has said about us bilateral bka, it is a whole different ball game when it comes to walking, but it can be done. I walk with no aid whatsoever, and am back to doing about 95% of what I was doing before I lost both of my legs in March of 2002.
I to had to make a decision about my right leg.
I had gangrene in my foot real bad. It started in the toes. By the time they got me to surgery, it was half way down the back of my foot. The doctors told me that if they saved my heel that it was possible that I would be back in for another surgery in three to six months. That's when I said cut it off and get it over with. I didn't want to come back a third time.
I hope this helps.
Jack (Pegleg) Pickerd <sparksjwp60@adelphia.net>
Fontana, CA USA - Thursday, May 04, 2006 at 15:08:45 (GMT)
Diana in Alameda, CA...I suggest you call Bill Foster, President of Accessibility Services, Inc right here in the Bay Area.
Bill will come to your home and tailor the services to Sean's needs and your household budget.
Saturday June 17th is our Stumps ALMA Cruise. Details are on page one of this web site. You BOTH should be on it!
Dan Sorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Thursday, May 04, 2006 at 13:44:57 (GMT)
After 5 years of battling bone infections including over 25 surgeries, my husband had his right leg amputated about 4" below the groin this week. Sean's got a great attitude and is accepting this new challenge with grace, courage and humor.
We've been talking about accommodations to make here at home to help him get around well for the next several months until he can be fitted for, and adjust to, a new prosthetic leg. Can you recommend any resources for finding real life, common sense adjustments around the house? He's using a walker now, but hopes to be using his crutches soon. During the next several months I want to help him reclaim as much of his life as possible. He enjoys cooking, for example, and I need ideas for some way he can 'scoot' around our small kitchen going from fridge to counter to stove to sink etc, carrying food, plates, pots, utensils etc. Hopping on one foot is not an option!
I've been researching online and looking at the catalogs of rehab equipment but not finding any practical ideas that don't cost - forgive the expression - an arm and a leg.
If you have resources or ideas I would love to hear about them.
Diana <d.mcd1@comcast.net>
Alameda, CA USA - Thursday, May 04, 2006 at 13:39:58 (GMT)
Hi Dan!
I wanted to tell you about an event that I am involved in planning. It's called the O & P Extremity Games. It is the first ever Extreme Sports competition for amputees.
For details please see our website at www.extremitygames.com .
The event will be held July 28th through the 30th in Orlando, FL at the Orlando Watersports Complex. Registration and a Health Expo will be held on Friday, July 28th. The competitions will be held on Saturday, July 29th.
The sports that individuals will be competing in this year are Skateboarding, Rock Climbing, Wakeboarding, and BMX Biking. We have a $25,000 cash purse for the winners. In each sport we will award $5,000 to 1st place, $1,000 to 2nd place and $500 to 3rd place. We will be having several demos performed for entertainment by amputees on Saturday as well, including Sky Diving, Trials Dirt Bikes, 4 Wheelers, and a Kayaking races by the Wounded Warriors. On Sunday, we will be having free instructional clinics for people interested in trying any of the sports from the day before.
I am contacting you to see if you or anyone you know may be interested in helping or participating in this event in any way. We are open to your ideas! Downloads are available on our website for your use if you are interested.
Thank you!!
Stephanie Wallace <Stephanie@college-park.com>
Orlando, FL USA - Monday, May 01, 2006 at 02:28:04 (GMT)
Connie in Newnan, GA...If it was me that had to make the decision I would opt for the 2nd B/K amputation now rather than later UNLESS the doctors think that removing just a toe would solve your poor circulation problem.
Since another surgery involving a transplant is already in your future I would want to be hospitalized as little as possible.
With two B/K amputations walking is tougher than with just one BUT can be done. We have sever bilateral amputees in stumps 'R Us that walk very well.
Good luck in whatever you decide.
Dan Sorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Saturday, April 29, 2006 at 14:19:38 (GMT)
Hi Dan, I received a right b/k amuptuation almost two years ago, and lo and behold, I'm having the same pain and redness in my other foot now. I'm diabetic for 40 years
with kidney failure waiting for a transplant, but I'm so afraid of losing my other leg.
Do you suggest I try to talk the Dr's into just taking off the toe?
I have poor blood supply and thats whats causing the pain.
Or should I do as they wanted to last and go
straight for the below knee.
I walk pretty good, so people say great, with my prosthetic leg and it is very comfortable.
Will I be able to walk again?
I have so many questions I am overwhlemed.
Please ask some one to write me .
Thank you!
connie mcdonald <maxgirl926@yahoo.com>
Newnan, GA USA - Saturday, April 29, 2006 at 13:51:27 (GMT)
Thank you so much for your advice...and for being kind enough to answer. I know/knew that would be the right approach....I guess I just maybe needed confirmation.
Again I do appreciate your understanding and allowing me to use this format as a resource.
Thank you!
daniellle cavezza <danicavezza@yahoo.com>
Cleveland , OH USA - Monday, April 24, 2006 at 23:01:54 (GMT)
Dani in Cleveland, OH...The solution to your dilemma is simple. IT IS HONESTY!
Say to your new friend precisely what you said in this E-mail. Assure him that his amputation is not a "relationship killer". Explain that you have even more respect for his getting on with his life as that demonstrates character & strength. Ask questions about the prosthesis, the accident and other facets of his life.
Character is not in the limbs. It is in the heart
Dan Sorkin <DanSorkin@comcast.net>
San Francisco, CA USA - Monday, April 24, 2006 at 20:53:31 (GMT)
First I must say that I am not an amputee myself. I apologize if perhaps this is the wrong forum in which to ask this question, but I'm looking for some guidance and help and thought perhaps I could find some perspective here.
About 2 months ago I met and started to date and form a relationship with a guy I had met at school. (college) We met first in class and then later at a party and easily formed a friendship. One of the things I "noticed" about him was that he had a limp or some difference in his gait.
I didn't ask, I didn't probe....it made no difference etc etc. He didn't offer an explanation.
Things have/had progressed to a point that complete honesty is key and he told me that the difference is his gait is because is an above knee amputee and lost his leg about 5 years ago in a boating accident.
Since that time, things have been different and I sense that he is pulling away.
I have thought about my reaction to this news and I can honestly say that while I was certainly surprised, I don't think that I reacted negatively. I'm sure my body language revealed shock and surprise....but those were honest.
I told him that I was sorry and that it's obvious to me that he handles it well, that I was glad he finally felt comfortable in telling me. I felt awful for him that he had to go thru the apparent agony of sharing this news with me.
But that the bottom line was that my feelings for him didn't change....if anything I felt even stronger for him because of this. (because of his strength to have gotten thru etc)
Now...because of how he has responded I am so afraid that I said the wrong thing, reacted the wrong way.
HELP! What do I say? Did I say something offensive? How do I help him past thinking that perhaps this is a relationship killer?
I really like this person and felt like we had something special developing. That he is missing a leg and uses a prosthetic one does not matter to me one bit. I know this in my heart...how do I help him to know it in his?
Thanks for any help and suggestions,
daniellle cavezza <danicavezza@yahoo.com>
Cleveland, OH USA - Monday, April 24, 2006 at 20:45:59 (GMT)
Just alittle note about the ERTL proceedure.
For most amputees it works wonders. But there is a small percentage it doesn't work as well.
I am that small percentage.
I seem to have always been that 2% patient. It's been 1 year and three months since my surgery. One side of my bridge has not yet calcified.
They took 2 big nuromas out and I can diffently feel a big difference with that. But I still have some pain. It's not as much as it was and it doesn't keep me awake like it use to. So all and all I am better than I was but not quite as good as I expected.
Life is beautiful so I willl accept what I have and do my best with it. I just wanted to give another view on the ERTL procedure.
Debbie <debc328@msn.com>
Council Blufs, IA USA - Sunday, April 23, 2006 at 17:05:44 (GMT)
Attention STUMPS! This is an announcement of an upcoming event in Orlando, FL
http://www.extremitygames.com/
The O&P Extremity Games by College Park is an extreme amateur sporting competition for individuals living with limb loss or limb difference. Organized to raise awareness of the ability of amputees to compete in extreme sports, the O&P Extremity Games allows participants to demonstrate skill, persistence and passion while competing in various events for cash and other prizes - all the while proving There’s No Replacement for the Competitive Spirit.TM
Do you have what it takes? Prove It.
Individuals 13 years of age and older living with limb loss or limb difference are eligible to compete in the O&P Extremity Games.
Is the competitive spirit in you?
Put your athletic ability to the extreme test in one of the following sporting competitions:
Skateboarding
BMX Biking
Rock climbing
Wakeboarding
Set your sights on:
July 28-30, 2006
Orlando, Florida
Joe Kennedy <joseph.kennedy72@verizon.net>
FL USA - Tuesday, April 18, 2006 at 14:24:59 (GMT)
My name is Jasmine Bauknight. I am a student at Brown University. I am doing research on a project that aims to build a better prosthesis specifically for, but not limited to, military personnel injured in the Iraq war.
I am trying to get a wide variety of perspectives from patients, and practioners and would like to conduct an interview with anyone who is interested in helping me understand what the amputee experience is like.
At this time, I'm specifically looking for above-the-knee, and upper limb amputees as well as military personnel who have had amputations as a result of participation in Iraq or any previous war.
If you would be willing to speak with me about your experiences with prosthetics, and share your opinions on drawbacks or possible improvements, please contact me at Jasmine@brown.edu so we can set up a phone or e-mail interview.
Thank you so much for your help!
Jasmine Bauknight <Jasmine@brown.edu >
Providence, RI USA - Friday, April 14, 2006 at 03:10:52 (GMT)
Lilie...Being a diabetic with a B/K amputation is not the end of the world. You have so much going for you.
1) Only one limb has been removed (below the knee)
2) You have two arms, hands and a surplus leg
3) You have a husband that takes care of you
4) You are an American living in the USA (not Iran or Iraq)
Your depression and socket fit will be cured by WEIGHT LOSS!
You have all the motivation you need to lose the weight.
1) You will walk again
2) Depression will disappear
3) Your husband will not leave you
4) You can look for a bigger apartment
Losing weight is difficult IF you have no real incentive. You have LOTS of incentives.
Get on with this life of yours. You only have one! Don't waste it.
Dan Sorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Wednesday, April 05, 2006 at 02:47:44 (GMT)
My name is Lilie. I became an RBK in June of 2005. The last time I had my stump in the socket and stood up and took some steps was around Christmas time. I am a diabetic and putting on weight because I can't move around. Because of the weight issue I am unable to put my leg on myself. (I always need help from my husband)
It is very difficult to get myself in and out of bed because of my weight. Hard to get in and out of the wheelchair also and not to mention in and out of the van when I want to go places. Because of this I don't go out much.
My husband and I live in a studio smaller then 20 feet by 22 feet. I feel so trapped and my stump is too large now. It won't fit into the socket.
I have trouble getting myself to my doctor who takes care my leg and socket. It just seems like a losing battle.
I need a new extra wide heavy duty walker and I can't afford to get one because the one I need cost $500 and they won't take Medicare/Medical which I have. I am just waiting for the one I have to give out of good.
Because of the weight gain I have doubled my fear of falling. I find myself getting very depressed and feel like giving up. My husband and I don't see eye to eye a lot of the time and I know it has something to do with this room we live in. He is my full time care giver and it takes it's toll on him as well as me because I have to depend on him for everything.
I feel so helpless and often question if I will ever walk again. Most of my days are dark and I just want to see some light again. I want to live again. If anyone can help feel free to email me.
Thank You!
Lilie <LRoonikins@aol.com>
USA - Wednesday, April 05, 2006 at 02:36:13 (GMT)
Hello Susan...Your inquiry found it's way to me, since I'm both a hemipelvectomy amputee and a doctor. My web site is www.hphdhelp.org. Technically, if the gal in question still has an intact pelvis, she is a bilateral hip-disarticulation. If all or part of the pelvis was also removed, she becomes a bilateral transpelvic (or hemipelvectomy) amputee.
Granted, in either case, this is rare, and her future mobility is quite limited. However, much depends on her age, basic physical condition, other medical problems and conditions, if skin grafts were used, etc. This becomes quite complicated.....
Usually people in this situation as a minimum will require a "sitting socket", or "bucket" which will provide stability and comfort to sit up straight. Artificial limbs can be attached, either for cosmetic reasons or to stand, along with the use of canes and/or crutches (highly unusual, but not impossible). Most people in this situation will use a wheelchair, and she needs to know even with that, her life is not over and is worth living. Special seating devices can also be created for her if necessary.
My question to you is, are you asking simply for information or curiosity.....OR does the lady in question require some specific help and support dealing with this tremendous alteration in her body and life??
I would highly recommend that you contact the Amputee Coalition of America www.amputee-coaltion.org 1-888-AMP-KNOW They can provide her with basic help and support in her time of need. If she wants more specific information, or contacts to others, or prosthetists with experience in dealing with this highly unusual situation, please don't hesitate to contact me.
Sincerely yours,
Christina Skoski MD
www.hphdhelp.org
christina@hphdhelp.org
Christina Skoski, M.D. <christina@hphdhelp.org>
USA - Tuesday, April 04, 2006 at 23:58:56 (GMT)
Susan Sullivan in Indy...In addition this was what i came up with online just by entering amputee terminolgy Have a great day
AMP-L FAQ on Definitions:
Language evolves over time, as will this FAQ. The following will help serve as a foundation for those unacquainted with the terminology.
AE: above elbow amputation
AK: above knee
Adherent Scar Tissue: Scar tissue formed in the healing process which sticks to underlying tissue such as muscle or fascia or bone.
ACA - Amputee coalition of America
ADA - Americans with Disabilities Act
BE - Below Elbow
VSBE: very short below elbow
Symes - amputation at the ankle or through the foot
DAK - Double AK
Bilateral: both sides---legs or arms.
BK: below knee
Congenital: a birth anomaly such as a missing or different limb
Cosmesis: an odd term used to describe the outer, aesthetic covering of a prosthesis. Refers to the appearance of the prosthesis, whether a "naturalistic" treatment is attempted.
Disarticulation: an amputation through a joint: commonly the hip, shoulder, knee, ankle, elbow, or wrist.
Dorsiflexion: pointing the toe/foot upward, toward the body
Endoskeletal Prosthesis: one built more like a human skeleton with support and components on the inside and a cosmetic cover on the outside.
Exoskeletal Prosthesis: a prosthesis that is hollow on the inside with a hard outer surface to bear weight built more like a human leg or arm with support components on the inside and a cosmetic cover on the outside.
Donning and Doffing: putting on and taking off a prosthesis.
HP: Hemi-pelvectomy: an amputation where approximately half of the pelvis is removed
HD: Hip Disarticulate - Entire leg removed
Ischial Tuberosity: the large sitting bone
Lateral: to the side, away from the mid-line of the body
Medial: toward the mid-line of the body
Myoelectrics: literally muscle electronics. Technology used in prosthetic for upper-extremity amputees; used in prosthetic hands and elbows to control the prosthesis via muscle contraction using electrical signals from the muscles to the prosthesis.
Myoplasty (muscles anchored to opposing muscles)
Myodesis -referring to muscles anchored by sutures through the bone
Note: before the above anchoring procedures were adopted there was much greater at reduced function of the stump.
Neuroma: the end of a nerve left after amputation. The nerve will continue to grow in a circular pattern and can be troublesome, especially when trapped in scar tissue. A small mass or ball formed as nerve fibers continue to grow after being severed in the amputation.
Orthotics :the profession of providing devices to support and straighten the body.
Orthosis :the singular for a supportive device. Orthoses is plural.
Orthotic is mostly used as an adjective. However it can also be used as a noun. The usage of the noun form has historically been limited to arch supports and was coined by the podiatric field---re: a foot orthotic.
The noun form of the word is not generally accepted by Orthotists or the Orthotics profession and is, in fact, frowned upon. Please don't call your support an orthotic. It will send chills up the spine of every respectable orthotist. Well, you can, but you won't be on the money.
Partial Foot: an amputation on the front part of the foot
Plantarflexion: pointing the toe or foot down, toward the sole
Preparatory Prosthesis: stage between temporary and permanent prosthesis, using transparent diagnostic test socket and special fitting techniques to accurately fit the prosthesis so problems can be eliminated before it is cloned for the permanent prosthesis.
Prosthesis: An artificial part of the body. In the case of amputees, usually an arm or a leg.
Prosthetics: the systematic pursuit of providing cosmetic and /or functional restoration of missing human parts.
Prosthetist: a person involved in the science and art of prosthetics; one who designs and fits
Posterior: the back side of the body or part in question---ie: Posterior knee or patellar region.
PTB: Patellar Tendon Bearing BK Prosthesis. The Condyles are the proximal (near) ends of the tibia and fibula. My socket is a PTB with additional weight on the condyles. This gives 3 major points of contact, the patellar tendon, lateral condyle (fibula) and medial condyle (tibia).
Early Prosthetic Fitting: A procedure in which a preparatory prosthesis is provided for the amputee immediately after removal of the sutures.
Modular Prosthesis: An artificial limb assembled from components, usually of the endoskeletal type where the supporting member, or pylon, is covered with a soft foam or other light material shaped and finished to resemble the natural limb.
Definitive, or "Permanent" Prosthesis: A replacement for a missing limb or part of a limb which meets accepted standards for comfort, fit, alignment, function, appearance, and durability. Some amputees think this result is as rare as kryptonite.
Check or Test Socket: A temporary socket, often transparent, made over the plaster model to aid in obtaining a proper fit.
Preparatory Prosthesis. An unfinished functional replacement for an amputated limb, fitted and aligned in accordance with sound biomechanical principles and worn for a limited period of time to accelerate the rehabilitation process.
Prosthetic Feet
SACH:
Single Axis Cushion Heel---or Solid-Ankle Cushion Heel: foot used since the Civil War. It is based on an ankle hinge that provides dorsiflexion and plantarflexion. The disadvantage of a single axis foot includes poor durability & cosmesis;
Multiaxis foot: allows inversion and eversion and rotation of foot and is good for work on uneven surfaces at the expense of overall utility and weight.
Energy Storing: designed with a flexible keel and may perhaps become the new standard for general use. They are designed with a cantilever spring and are best for young & athletic patients.
Pylon. A rigid member, usually tubular, between the socket or knee unit and the foot to provide support. Often what is referred to as a pole in a temporary prosthesis; the weight bearing support shaft in an endoskeletal prosthesis.
Ramus: the middle portion of the pubic bone, in the crotch area. the front middle portion of the pubic bone, palpated just above the genitals
Residual Limb: remaining portion of a limb after amputation
Rigid Dressing: A plaster wrap over the stump, usually applied in the operating or recovery room immediately following surgery, for the purpose of controlling edema (swelling) and pain. It is preferable, but not necessary, that the rigid dressing be shaped in accordance with the basic biomechanical principles of socket design.
Shrinker: a prosthetic reducer made of elastic material and designed to help control swelling of the residual limb.
Stump: a word commonly used to refer to the residual limb.
Supracondular Suspension: a method of holding on a prosthesis by clamping above a joint.
Symes: An amputation through the ankle joint that retains the fatty heel pad portion and is intended to provide end weight bearing.
Temporary Prosthesis: a prosthesis made soon after an amputation as an inexpensive way to help retrain a person to walk and balance while shrinking the residual limb.
Transtarsal amputation: through the tarsal (tarsus) or foot bones
Normal Shape/Normal Alignment (NSNA) - also know as a narrow ML socket: First described by Ivan Long, this socket more closely approximates the shape of the musculature of a residual limb, when compared to a quad socket.
The sides, or medial/lateral measurement is tightened down to squeeze the residual limb, with most of the squeezing taking place on the outside or lateral side. This helps control the rotation of the socket by putting pressure along the fleshy area of the leg that can handle some side to side pressure.
Long's Line was also first described by Ivan Long, and has to do with the location of the foot in relation to the head and distal end of the femur and is used in alignment. It is a straight line from the head of the femur, though the distal end of the femur down to the center of the heel of the prosthetic foot.
The Ischial Containment Socket is a derivative of the Narrow ML, as a special attempt is made to form a little pocket for the ischium to sit in:
The ischium is a bone that protrudes from your pelvis that may get sore when sitting on a hard surface for extended periods of time.
An Ischial Containment (IC) socket cups this bone on the inside and back as well as the bottom to accomplish two things: 1) By cupping, or containing this bone inside the socket, the socket tends not to shift laterally (outside) when weight is put on it, making walking more efficient. This style of socket can be very intimate and may take some time to get used to in order for it to become comfortable.
TEC: Total Environmental Control liner
A TES belt is a suspension system that has a neoprene ring which the prosthesis slides into. There is a neoprene belt that attaches around your waist by velcro (uhh, hook and loop fastener). It usually gives good suspension but can be hot in a warm climate.
VSP - Vertical Shock Pylon - Shock absorber on the Reflex VSP model prosthetic foot by Flex Foot.
Joe Kennedy <joseph.kennedy72@verizon.net>
CA USA - Tuesday, April 04, 2006 at 03:33:55 (GMT)
Dear Susan in Indianapolis, IN...The condition you described is called either a Hemipelvectomy or a Bi-Lateral Hip Disarticulation.
DanSorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Tuesday, April 04, 2006 at 00:30:10 (GMT)
Hi, Dan! I encountered your Web site looking for the correct medical terminology that one would use to describe someone who has had both legs amputated and there are no resulting stumps. In other words, the bone was actually removed from the hip socket. Do you know what that is called?
There is a woman here in Indianapolis who has had to have the procedure done because of severe blood clotting. She was on blood-thinning medicine for lupus, I believe, but also had kidney issues. They needed to do a biopsy on her kidney, so took her off the meds for about one week. Because she wasn’t taking her meds, the developed severe clots and they tried partial amputation but then gangrene set in. Hence, they’ve now removed both of her legs.
I want to research the procedure in more detail, but don’t know the proper terms.
Any assistance you might give would be appreciated.
Thank you.
Susan Sullivan <ssulliva@ihets.org>
Indianapolis, IN USA - Tuesday, April 04, 2006 at 00:27:55 (GMT)
Dear Workers' Compensation Case Manager in the Orlando, FL Area (do you have a name?),
The closest thing I have to a Stumps 'R Us type of "humor therapy plus" is Tony Barr of the Barr Foundation in Boca Raton. Tony's E-mail address is t-barr@t-barr.com
Good hunting!
We can forgive a child
who is afraid of the dark;
the real tragedy of life is
when men are afraid of the light.
...plato
Dan Sorkin <Dansorkin@gmail.com>
San Francisco, CA USA - Tuesday, April 04, 2006 at 00:23:04 (GMT)
I am a Workers' Compensation Case Manager in the Orlando, FL area. I am working with a patient who with ATK amputation due to a severe injury at work. He is having difficulty adjusting. I did some research on-line and feel that Stumps-R-Us type of "humor therapy plus" might be perfect for him. Do you have a chapter that meets near here?
BLANK <smburton@cfl.rr.com>
Orlando, FL USA - Tuesday, April 04, 2006 at 00:21:03 (GMT)
This is some basic information that describes the MIRROR BOX THERAPY. This concept goes back many years, and is getting much recent attention.
This was my experience:
My amputation (right primary hand) left me with a strong "clenching" feeling and intense "phantom" pain. I felt I could not unclench the missing hand, or "shake it out" to mitigate the pain. The experience would last for hours, and at least twice a day, plus the bonus of sleep-time episodes.
The mirror I used was a 12" x 18" which I placed on the vertical on a tabletop, mirror reflecting my good hand, with my stump out of my view, on the non-mirrored side. I would concentrate on my good hand, clench and unclench it, shake out the pain I sensed in my missing hand. After several repetitions, the pain subsided, as I imagined I had full use of my "phantom" hand.
I would repeat this exercise each morning, and whenever I had an episode. Within a week, the pain episodes were very few. In several weeks they were completely gone.
A "humorous" side effect resulted as my mind had convinced itself the hand was back, I found myself dropping items, misjudging distances to doors, etc, leading to a number of "I Love Lucy" moments... but they ended within weeks.
Here is another related reference:
Ease pain by taking a good look at yourself
13:10 01 November 2005
NewScientist.com news service
Gaia Vince
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