Charcot Marie Tooth Disease

[vickig]

I wondered if anyone has had hand surgery for their CMT? I have read a couple of articles regarding tendon transfers and joint fusions, but am having a difficult time finding a qualified doctor to discuss this with. Nor have I met/talked to/etc. anyone who has had hand surgery. I have had multiple, 7-10 surgeries on my feet and feel as if they were very successful and helpful in dealing with the problems associated with CMT ......so I am quite anxious to explore hand surgery....my hands are failing me fast!
Thanks!

[finngirl]

Hi,
Why have hand surgery? I have never had any surgeries as the muscle isn't strong enough to support any hand surgeries. I would just use things like afo's to support your hands and learn to do things differently;like holding a pen or eating with a fork. They have built up forks and spoons for eating. Hope you talk to an experienced neurologist. My neurologist never recommended any surgeries because the muscle isn't strong enough.

[vickig]

Hi - Thanks for your suggestions - but I refuse to resign myself to this disease! Guess I'm still trying to be 'normal'. I'm not 'into' AFO's and so far have been able to avoid much 'contact' with them! We (CMTers) do have some good muscles and tendons and those can be used to help the weaker ones (I have experienced this concept in the foot surgeries). I have a good neurologist, but they are not the specialists to consult with when it comes to the surgeries. I guess we each view this disease differently and we all have different symptoms and degrees of severity. Good luck.

[finngirl]

Hi Vicki,
I wasn't trying to be mean about hand surgeries. I was just never suggested to have any surgeries because our muscles are not strong enough to support the surgery. I use my hands alot,although they are weaker. I don't use afo's or built up forks. Sorry if I was regarded as mean.

[vickig]

Hey - don't worry about it - I didn't think that you were trying to be mean.

I have an appointment with the Head of Hand Surgery of the CMT Clinic at Cedars Sinai in a couple of weeks - maybe he will have some encouraging news.

Take care - Vicki

[finngirl]

Hi Vicki,
let me know how things go and if the hand surgeon thinks it is worth doing surgery.
be well,
jude

[vickig]

Jude -
Thanks - have a good week-end -
Vicki