I am a 28 year old guy with PFFD in my left leg. I haven't had any surgeries yet in my life for it. Because my foot is smaller, angled downwards and only has 3 toes, I've been able to wear a straight-legged prosthesis without anything "protruding" outwards. Basically, when wearing jeans, it looks pretty normal.
The problem I have is I can't sit in back-seats of cars, can't ride many roller coasters, can't sit in alot of theaters to watch movies, because my leg is always "straight". They couldn't put in an artificial knee, because with my foot, it is just too long, and the knee would be too low to be of much value.
So, my wife and I were out looking at mini-vans today, and almost every one on the market I am unable to drive because there is not enough room to the left side of the break for my always-straight leg. This got me thinking, what if I were to have my foot amputated. I could then have an artificial knee in place at the right height and could bend it!
This idea gets me very excited at the possibilities in what I would be able to do without so much stress in my life about being able to sit down in every-day outings.
So, I rushed over to my prosthetics place, where Brian Neep, my prostition talked to me about this idea. He was very hesitant and really urged me to find someone else who has had this procedure done. I agree, that this isn't to be taken lightly, so here I am.
If there is anyone out there, who has had their foot amputated, and could tell me of their thoughts, experiences, success / failures, doctors they used, hospitals, etc, I would be so very grateful.
I am excited at this prospect, but don't know where to begin, and am so afraid of ruining what I have today by having a bad surgury and more pain.
Anyone out there?
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My contact information
Email me at: jsidlosky@gmail.com
Symes Amputation
I am a 33 year old who has a Symes amputation at age 7. I went through a series of "wandering treatments" that included lots of re-alignments (trying to get the placement of the femur on the left to mirror the femur on the right). I had 22 total surgeries and then the last set at age 17 did not heal so I could no longer wear a prosthesis. 22 surgeries is abnormally high due to the poor treatment planning.
My treatment started at 8 months to secure my hip socket and rebuild part of my pelvis (I'm class D). This continued until age 4.
I was given a brace at about 16 months.
At age 7, I had a Symes amputation, which leaves a stump that moves because part of the ankle and foot bones is left. This is the best type of amputation because it pretty much guarantees that there will not be a need for stump revisions. My parents consented after I started having pain from my brace and they were assured leg lengthening was "far out" research and never going to be a feasible treatment. (Five years later it would have been an option.)
I was given a straight leg with no knee.
Then at age 8 my growth plates were remove to slow the growth of my leg. At age 9 my knee and four inches of bone around my knee were removed. Then the plate from this surgery was removed. This surgery caused excess muscles, skin, etc to just be left so my leg started looking like a drumstick (not very attractive and horrifying to a pre-teen girl).
I was fitted from a full leg prosthetic with an external knee and for the first time in my life, my hip started hurting.
Then at age 15 the pain was becoming unmanageable. My amputated leg had always been considered to be too long so it was decided to remove 6 more inches of bone. This left so much extra tissue that I then had lipo to try to reform the leg to fit a prosthesis again. However, the bone never healed. Another realignment (because a doctor figured out my pain was from a part of my femur head hitting my pelvis when I walked) and bone graft was done. Then another bone graft, with glue and what looks like spikes on my x-ray.
By now I was 20, I tried wearing a leg with the new glued, spiked and graphed area below the head of the femur. The pain was unbelievable and because the last realignment lengthened my leg...I could lot get my leg in the driver's side door of my car, I could not walk on my "knees", I could not sit comfortably in college classes so I said something to the effect of "screw this" and started using crutches and not wearing a leg. More surgeries were offered and I declined. I wanted to be a crazy college kid, not a patient!
However, all these years later, I am now considering a new surgery that might make a prosthetic leg possible again. When I had the prosthetic it was mostly a positive thing and the negatives were all because of hip and length problems.
It certainly does not hurt to get a couple doctors opinions. I think you already have determined the most important thing since you understand that surgery could make things worse.
Mini-Vans
You might want to talk to a medical supplier who installs hand controls. A lot of the lower dashboard is "for show". If you get someone who does a lot of this type of work the can tell you which ones have the most extra room. My dad has hand controls and wears a brace. (He's a Veteran.) He drives Durangos almost exclusively for the leg room and the extra leg room when the lower dash is cut and modified. I tried to have this done to a car while in college, but the air line to the vent was too low.
Just something to consider......