[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

[TaLLan]

I have had 2 surgey's that have to do with CMT. I had a carpal tunnel release in the 1990's and a tibial calconeal tendon transplant in the late 1980's. Both operations have helped. my right hand is stronger than my left and my right foot is not as effected as my left. The tendon transplant was due to a ruptured tendon in my right ankle and at the time I knew nothing about CMT. Looking back I now know both operations were because of the CMT. You need to seek out a GOOD orthopedic and vascular surgeon. Also ask the Vascular doctor about stents in the major arteries into both feet. The stents will keep the artery open and will unentrap the peroneal nerve.
Good Luck.

[vickig]

Thanks for the info. I just saw another hand specialist - the following is from his report - I hope it is helpful for anyone out there that is having hand problems. (I also believe there are some slight 'typos' in the transcription, so keep that in mind when you read it!)

"Both hands have marked intrinsic atroph. The right hand function however is recently reserved the left is not as preserved. In particulare the left thumb has complete loss of opposition hand and s are pinch"

"Plan: Recommend oponnens transfer and pinch transfer of the left thumb as staged procedures."

FYI - I have requested a second opinion, and have discussed this in great detail with my O.T. I plan to explore the specifics further, but believe that I am finally receiving some solid, helpful recomendations - I plan on hand surgery sometime next year. Another helpful surgery for the CMT hand is the 'Zancolli Lasso Procedure' - it addresses a different issue.