ankle fusion/input-advice

[Guest guest]

Oh Hope,

How awful it is to hear you were given wrong information about CMT.

I too don't think much of the MDA clinics (tried 2 - one when I was

in my 20's - three old ladies and me - they didn't even have CMT, yet

for some reason I was supposed to be in a 'support group' with them.

They were all wheelchair users in their 60's or so, and I had nothing

in common with them, so I bailed out. The MDA doc was adamant I get

AFOs.

Well, he**, I walked in the clinic fine, and I walked out fine! I

originally went at the suggestion of a private neurologist who

thought perhaps the MDA people could help me with my tremor. Well, of

course they didn't, but decided I needed AFOs without any

explanation. It was sort of an assembly line of all sorts of people

getting measured for AFOs. Of course I bailed out.

Two years ago I tried to contact the MDA office in my county. I just

asked if they had a CMT support group and new literature.Instead, I

was sent all sorts of MDA info, plus a pitch for donating $, then the

clinic director wanted me to come to their Christmas party. I mean,

give me a break. So that time I never even got to the clinic. There

was something on the application that I thought was odd too - they

wanted my social security number - reason unknown, I left it blank,

the clinic director said she needed it. I said she didn't at this

time. Because I would not give her my SS#, she said I could not

attend the MDA clinic. Give me a break. If and when I ever was going

to the clinic I'd provide all the medical info I could and would ask

why they needed my SS#. I know the clinic doc and if I ever need a

3rd or 4th opinion on a CMT issue, I'll go see him in private

practice.

Here's a link for Helios braces http://www.ordesignslv.com/index.php

They are in Las Vegas toll free phone is 888.696.9909 or email Mitch

at info@... A number of members and others with

CMT I know think they are the BEST.

As for surgery on your feet or ankles, absolutely no way do not let

those docs operate the way they are thinking. CMT feet are very

special and if surgery needs to be done, there should be a well

established surgical plan made by your doctor, who has a proven track

record of CMT foot surgeries. Do not let yourself be their guinea pig

or used to further their own education.

~ Gretchen