Re: CMT and foot surgery.

[Guest guest]

In a message dated 1/12/2002 5:03:34 AM Pacific Standard Time,

weldonpoling@... writes:

> The procedure is called plantar facia release and interior transfer of the

> posterior tibial tendon

Um hard question for me to answer. I had so many things done as a kid.

I have 5 children 3 so far with CMT. This is just my opinion but sugery

should be the last resort.

Have you looked into TES therapy? Look up Dr. Pape on the web. Her

therapy does help bring down those heal cords. I used it with my son Adam.

jenny

[Guest guest]

<<Message: 15

Date: Sat, 12 Jan 2002 07:59:01 -0800

From: Weldon Poling <weldonpoling@...>

Subject: CMT and foot surgery.

The procedure is called plantar facia release and

interior transfer of the posterior tibial tendon.

Also Duke University in

NC will be testing him for CMT. Has anyone themselves

or their children

had this done? If so, how has it helped ,or were

there any major

complications caused?>>

Greetings Weldon,

I myself had this exact procedure done on both feet

(One at a time over 3 years) By Dr. Sussman at

Shriners Hospital in Portland Oregon, when I was a

teenager. It has helped my balance GREATLY, although

it was VERY painful. In the process of this operation,

they fused both of my great toe joints, and implanted

a 3 " screw in both of them (Which I later had removed

due to excessive pain when I stubbed my toes), and the

joints are still fused, so I cannot bend either one. I

have some residual pain from the scars, which tighten

up and cramp (Esp. in cold weather.)

Overall I am grateful I had the operations, or I

might be in a wheelchair right now.

If your child has really bad balance due to his feet

drawing up (I was originally diagnosed with

" ideopathic toewalking " when I was 6, a NVC test

diagnosed me correctly with CMT when I was about 14.)

I would recommend this procedure. Besides the scars,

my feet are now in a more normal alignment.

I highly suggest seeing a mental therapist before

AND after the surgery, as it was slightly tramatic for

me, finding out about CMT, and learning to deal with

the pain the surgery caused, as well as the social

consequences of wearing the braces... especially since

he is only 9, and at that age, his peers may be

especially cruel. His best weapon is knowledge when he

is teased.

Be sure to speak with his teacher, and put

together a packet of information for his teacher to

read, and to explain to the class. CMT is much a

hidden disease, and most people do not know you are

disabled until you tell them, or if you just tell them

" He has Charcot Marie Tooth disease " - they may just

nod, as if they know what it is, and think to

themselves, " O.K... he has a dental problem, big deal "

If you have any more questions, feel free to ask!

Peace,

M.J. Mann

http://www.quillspirit.com

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