Re: kids with CMT having surgery

January 6, 2005

Hi Cyn,

Spencer is the one that had surgery. He is doing pretty darn good. His other

foot has taken a beating being the only foot he could walk on for so

many months. So that foot needs to have surgery soon. I am 37. Oh, Adam is so

weak I thought his feet looked awful but the doctor said he actually looks

good. THUD! That was a shock to me.

January 6, 2005

....

I have a daughter who is almost 11. She had her Achilles tendons lengthened

when she was in kindergarten. We have what we feel is an excellent doctor - he

works only on kids. He is the one who suspicioned she had CMT - neither her

father nor I display any symptoms nor do any of our family members. He did both

tendons in the same surgery, and she was in casts for awhile after and then in

AFOs for a short time after that.

It was very successful on her at the time. She was an extreme toe-walker and

had gotten to the point where she could not bent her ankle to 90 degrees. After

the surgery, and ever since, she has been walking just fine. I remember the

doctor saying that the tricky part of the surgery is knowing how far to snip

into the tendon - you want some lengthening, but not too much. He has had a lot

of experience and I would highly recommend him. He works out of Chicago -but I

don't know where you are from.

Carol

January 7, 2005

Hi ,

Thanx for the info about the kids.I am 52 yrs. old. My son is 35. He is

the only family member w/CMT that I know of. was " somewhat " diagnosed at

15. He's now ready for the first of six operations on his feet. I don't have

all the details yet from doctor. Ive learned more from these " posts " and

website that all the docs put together since 1975!!

Seems everybody is different and CMT runs the gamit. I pray Im doing the right

thing for him.

Thanx again.

Cyn

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