CMT surgery and managment

[Guest guest]

This is for Martha. I'm Barbara and my daughter, who has CMT type 2, is

scheduled for surgery in March. I saw two of your recent posts about your s

son's orthopedist and and a doctor at Children's who recommended surgical

procedures

that she had only performed on cerebral palsy patients. I feel a bit like

I'm jumping into the middle of your conversation with someone else, but jump

I will.

Although my daughter is only 8 years, her foot deformities are severe enough

that

she can no longer wear braces (we went through 3 sets of braces in nine months).

All the doctors I have dealt with urged physical therapy and bracing until it

was no longer feasible. If your son is pain free and can do all or most of what

he enjoys doing, then surgery is probably premature. The timing on surgery can

be

tricky, however. While you want to put it off as long as possible (and indeed,

he

may never need it), once the deformities become uncomfortable surgery should be

done early enough so that the procedures needed only affect soft tissue. If one

waits

too long, so that boney deformities have developed, then surgical procedures

affecting

the bones becomes necessary. If and when surgery becomes necessary, you need a

doctor who knows and has done foot surgery on CMT patients. Some of the

surgeries

performed on cerebral palsy patients, I understand, are inappropriate for CMT

because

the underlying conditions are very different. CP is not degenerative so there

are more

surgical options, some of which can accelerate the decline of a CMT patient

(CAVEAT: I am

not a doctor -- only a CMT mom who has done a lot of research.)

You may wish to read some articles on CMT foot surgery by Dr. Frederic Shapiro,

who works at

Children's hospital in Boston in their MDA clinic, and by Dr. (?) Birch who

is an orthopedist in Texas. If you can't find them, contact me directly and

I'll copy

mine and send them to you. By the way, where do you live? Either I or others

might know

of some doctors near you. When you have a chance, I'd like to learn more about

your

experiences with massage and other therapies for your son (I am always doing

research).

Best of luck,

Barbara