Re: Below Knee Amputation

[Guest guest]

I had had a lot of painful issues with my Lt. ankle and foot brought about by

CMT. I had my Rt. Foot fused a long time ago and it worked great. I waited way

too long on my Lt. foot and now have a mess. The doctor is very skilled.

It boils down to an attempt to fix what is there vs. a BKA (below knee

amputation).

I seem to recall someone on this list having something similar a year or two

ago.

Anyway, the BKA would have a much quicker (2-3 weeks vs. several months)

recovery time and probably much more mobility. Then again, it is pretty drastic.

I am looking for people with similar experiences.

Thanks,

Shaun in Peoria

[Guest guest]

Hi Shaun,

I had a messed up right knee and in November 07 I had the knee fused, this

was not very successful mainly due to practicalities, in July last year I had

an above knee amputation, I use a wheelchair full time now as my remaining leg

is not strong enough to deal with a prosthetic leg, saying all this tho I am

now free of pain and have far better mobility.

I do not regret my decision. Good luck in whatever you decide and if I can

be of any help please get in touch.

Jill (North West England)

[Guest guest]

Shaun,

I have recently thought about how nice it would be to be without pain. I have

had 22 surgeries, 15 of which have been on my feet, mostly my left one. I have

been scared to approach my doctor with the idea of amputation, because I am

afraid he will think it is too drastic. Is it wrong to want to be able to live

life again pain free? My mother thinks I am crazy for even thinking

this, but she doesn't live in pain either. Do you live in Peoria, IL? If so,

I live about an hour from there. Do you see a ortho out there?

Jen

[Guest guest]

Hi Jen

Amputation is a serious step. Are you on any pain medication right now? Have

you seen

other doctor's for their opinions? This step is irreversible (as you must know)

so you

should only be contemplating such a drastic move if you've exhausted all other

means.

Mark

[Guest guest]

I cannot imagine how hard that decision was for you to make. I will

be praying for your speedy recovery and that you will be pain free

when heeled and using your prosthetic. Your approach to the

struggles that lie ahead seems so positive and realistic. Keep it

up! God speed.

[Guest guest]

You are one brave guy.....so was my dad he had both legs taken off one below the

knee and one above.

Blessing to you and a speedy recovery too. In my prayers.

Geri

[Guest guest]

That must have been a tough decision, but you aren't the first with

CMT I have heard of who opted for amputation and was satisfied with

the outcome. I'm 58 years old and had no prior CMT surgery, but on 2/9

had an ankle fusion, heel moved and arch lowered. When discussing

worst possible outcomes with the doctor we agreed that amputation

would be better than I was before. So far I seem to be recovering from

the procedures pretty well -- no pain after about day 3 and no need

for narcotics, just Motrin.

May I ask what went wrong with your fusion? You seem to be getting

around pretty well so soon after surgery. Can I also ask your age and

how bad your right foot is? I have a no weight bearing cast and cannot

use crutches. Mostly I think the problem is my balance is so bad on

one leg. I use mostly a wheel chair or hop on one foot with a walker.

Can't do that very well, so am hoping the walking cast makes me a lot

more mobile.

I wish you a speedy recovery. Being back to work in two weeks seems

amazing.

[Guest guest]

I have read of another CMTer who turned to amputation for relief of

symptoms, though I forget what site I read it on. They were very happy

and did much better with a prostetic leg. You are very courageous, and

I hope the very best for you. Keep us updated!!