Re: CMT surgery and managment

[Guest guest]

My surgeon says, 'if it doesn't hurt, don't touch it'. He is a young

surgeon as they go and I think that this is a new school of thought.

Dom

>From: ranagan@...

>Reply-To: CMTUS (AT) onelist (DOT) com

>To: CMTUS (AT) onelist (DOT) com

>Subject: CMT surgery and managment

>Date: 14 Jan 2000 14:39:59 -0000

>

>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

>

>

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[Guest guest]

Barbara and all others contemplating surgery,

Ruth Warren here,

Barbara's post offers some great, basic considerations for the surgery vs.

bracing dilemma. This is perhaps the easiest to understand yet medically

accurate description I've heard about the pros and cons of when to schedule

surgery. I know she is not a doctor. But everything she says makes sense!

My 9-yr-old daughter Katey is currently in AFO's. She has had serial

casting twice to stretch out her tendons. She is a chronic toe-walker. I

have changed doctors when the one we were seeing said surgery was the next

option after casting and didn't think bracing would help. In my gut I knew

we had to give bracing a try before we cut into a child. (At that time

Katey was 7).

I think we may need surgery for her at some point in time.

I just want it to be the right time. I rely on gut feelings a great deal

when considering medical options. I seek out medical opinion and gather

data from a variety of sources, but I also trust my instincts for myself and

as a mother for my children. Thanks Barbara for your insight. I will keep

your thoughts in mind as we go through the next few years.

Ruth

>From: ranagan@...

>Reply-To: CMTUS (AT) onelist (DOT) com

>To: CMTUS (AT) onelist (DOT) com

>Subject: CMT surgery and managment

>Date: 14 Jan 2000 14:39:59 -0000

>

>From: ranagan@...

>

>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

>

>

>

______________________________________________________

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[Guest guest]

In a message dated 1/17/00 12:58:30 PM Pacific Standard Time,

domie_parmee@... writes:

<< My surgeon says, 'if it doesn't hurt, don't touch it'. He is a young

surgeon as they go and I think that this is a new school of thought.

Dom >>

I totally agree with this.

jenny

[Guest guest]

In a message dated 1/17/00 12:58:30 PM Pacific Standard Time,

domie_parmee@... writes:

<< My surgeon says, 'if it doesn't hurt, don't touch it'. He is a young

surgeon as they go and I think that this is a new school of thought.

Dom >>

I totally agree with this.

jenny

[Guest guest]

In a message dated 1/17/00 12:58:30 PM Pacific Standard Time,

domie_parmee@... writes:

<< My surgeon says, 'if it doesn't hurt, don't touch it'. He is a young

surgeon as they go and I think that this is a new school of thought.

Dom >>

I totally agree with this.

jenny