Re: welcome Janice/Surgery Discussion

[Guest guest]

Welcome Janice,

I was diagnosed with CMT when I was 5 and even though Iwalk without a cane or

wheelchair I was diagnosed as advanced. My question to you or anyone here is

does surgery really help?

I read so many stories about people undergoing there 5th, 6th....surgery. I

also read how many times screws come loose and the need to repeat the process.

I was told recently that surgery does much more damage in the long run and was

also told if I had gotten surgery I would have been in a wheelchair by now. I

also wonder if its possible to be out of work so much and being in recovery a

large amount of the time. The

one doctor said I could get the tendon transfer surgery on both legs take a year

to recover and do it all again a few years later. Of course he too said it's no

good. What does everyone else think?

Andy

[Guest guest]

Welcome Janice! I'll be thinking of you with your up-coming surgery. I have

had a tendon tranfer on my right foot when I was 9, followed by a triple two

years later. I am 50 now, and am just now developing drop foot - although not

enough to warrant an AFO. I have had two triples on my left foot - at 13 and

15. I didn't stay off of it the first time, so had to have it redone. In 2000,

I had to have the ankle totally fused because of bone deterioration.

Both of my children have had tendon transfers, and are getting along fine. I

believe a knowledgeable doctor is vital to success with surgeries. I have

visited ortho specialists in both Children's Hospital in Columbus, Ohio and

town, West Virginia, and they both agreed that tendon transfers are the

preferred treatment, and only perform triples as a last option.

Mike