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BILATERAL AMPUTEES &
INTERNAL HEMIPELVECTOMIES
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SALLY
(Plainfield, Illinois) |
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I was put in a hip-spica cast and shipped back to the States. In an attempt to save my leg, a partial internal hemipelvectomy was performed with metal plates and donor bone (an ileo-fremoral arthrodesis) to hold it all together. By 1989 the plates were loose and the donor bone was not taking. After several more surgeries, I had little function. I felt as though I had put as much energy as I could afford into saving the leg, it cost me my marriage and I was developing chronic pain. In 1992 I decided to have the amputation, a hip-disarticulation which relieved my pain and allowed me to get on with my life. I ended up as a partial hemipelvectomy since the pelvis was removed first. I have used a prosthesis, but I prefer not to use it as I find it extremely labor-intensive and uncomfortable. I move much faster on forearm crutches and even faster in my wheelchair. To keep my good leg in shape I swim, jump rope, fence and play tennis. My wheelchair tennis career has been very successful, being ranked nationally number 2 in the men's A division, and I won the mixed doubles at the US Open my last year. Now I'm pursuing wheelchair fencing and hope to participate in the Paralympics 2000 in this sport. I am not shy about my "disability". Since my honorable discharge from the service, I've remained active with many Veterans groups and organizations. Most of my experience has been working with spinal cord injuries and spina bifida. Over the last several years I have been trying to concentrate more on children and have tried to make myself available to local hospitals: MD Anderson, Shriner's and TIRR. Now remarried and with two
step daughters, I'm a "house dad". I do lots of gardening
and have two very active dogs that keep me pretty busy. My wife and
I currently remodeling our kitchen, and in my spare time I serve on the
Board of Directors for Houston 2012 Olympic bid. Just let me know
what I can do to help. |
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JULIA
(Oklahoma) I had 15 operations from 5 yrs of age until 9 yrs of age when the decision was made to amputate my left leg.it was caused by benign desmoid tumors, that meant they took 1/2 the pelvis, 1/2 of tailbone, etc. and never gave me any support to sit up straight, so now I have horrible scoliosis.of course, I did try a "leg" around the age of 13 or 14 and it was a horrible monstrosity that I named "filmore" because that was the first "ugly" name I came up with. During my reading, I noticed that almost all the people, especially the females, wear "legs", why? After all this time, I am still not interested and cannot think of any thing in the world that I would like to do that I cannot do and not have to drag around something. I do no feel that I am blocking, I just never cared especially what people thought. I have been married for 17 yrs, chose not to have any children and have worked for the Dept. of Human Services as a social worker for 20 yrs. I use alum forearm crutches and see my chiropractor on a regular basis. I need help to sit up at work, lots of desk work and at the computer and that curved spine is where I tend to have a lot of nerve pain, not daily but sometimes very very severe. No doctor seems to be able to find a way to help me. Sorry this is so long but I got excited now that I found ya'll, yippee!! Thanks for being there and for the work you're doing. E-mail: Julia.wonsch@okdhs.org |
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LORNA (Missouri) (Age 90+) I live in Independence, Missouri and became a Hemipelvectomy amputee due to bone cancer when I was in my 50's, back in July 1963. After wearing a prosthetic device for 16 years, I decided not to continue wearing one, since at that time my prosthesis was more cosmetic than functional. I was never athletic, and preferred to get around using underarm crutches with "Lean On Me" crutch tips. More recently, following a fall and a broken arm, I'm even more dependent on my wheelchair. However, I’m still driving and able to do grocery shopping, get to my various appointments, out to eat, etc. My hobbies are cooking, sewing and genealogy. The items I sew are sold and the money given to LEAPS to help other amputees. I've learned how to use the computer, and recently have been helping Marianne Timmerman, from the Netherlands, to translate her new hemipelvectomy web site into English. e-mail: lhilgard@kcnet.com |
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LINDA (Michigan) I’m a Left HD and over a 10 year cancer survivor. I live in a suburb of Detroit with my husband and two children and have a transcription business out of my home. I use my prosthesis along with a cane, but my goal is to walk without a cane eventually and to improve my gait. I’ve had three prostheses but found that by losing some weight, my prosthesis now fits more comfortably. My present components are the Otto Bock hip, Total Knee, and Total Concept foot. In the past I tried other components such as the Littig strut hip and the Multi-flex foot. I’d like to converse with others about my options for components. My prosthetist is Jerry Vilminot, C.P. E-mail: Ladyljd@aol.com |
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STEVE (Indiana)
I’m 19 years old, hemipelvectomy due to a traumatic motorcycle accident in 1997. I live in a suburb of Chicago. After my accident, my parents were told I probably wouldn’t survive, and never walk again (the doctors had no experience with hemipelvectomies). I proved them wrong. It wasn’t easy, it took over a year of multiple surgeries before having my first prosthesis made. I wear my prosthesis now an average of 12 hours a day . I am a student at Purdue University and my career goal is to become a Mechanical Engineer. Between college classes, sports, my active social life and fittings for my new prosthesis. My prosthetists are Scheck & Siress. E-mail: I’m kind of busy, but you can reach me or my parents, Bill and Pat, at decolores2you@yahoo.com |
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RICH
(Cincinnati, Ohio) (Hemipelvectomy) My problems began in the late 1990's with right hip pain. After multiple tests, work-ups and mis-diagnoses such as Paget’s disease and arthritis, I had a hip replacement done. A few weeks after this surgery, I found a lump in my groin. Eventually I found my way to the Cleveland Clinic where I had my hemipelvectomy amputation in May 1995. They found a football sized chondrosarcoma which does not respond to radiation or chemotherapy, so it was surgery and...prayer to get rid of the cancer. So far, so good, I've remained cancer free since then. Back then as a new amputee I found little support or information in my area, however I became involved with the Amputee Coalition of America and eventually started a amputee support group locally. I've made some wonderful friendships with a number of extraordinary people through the ACA. My involvement with this organization has also opened up a slew of travel, social and recreational opportunities. I own and run
my own business and participate in
"recreation with a vengeance" as often as I
can get away. I love to travel and
enjoy driving around the country meeting many of the amputee mailing list members and
attending classic car shows. My hobby is buying and restoring old classic cars,
and I'm always willing to try new activities such as jet skiing and
snowmobiling. Although
I've had two prosthetics, I
prefer to use crutches for mobility. I still feel like the
leg is a "bar stool" strapped around my waist
and just slows me down. I'm always willing
to talk to new amputees. USA -
EASTERN REGION |
