Re: Found out something interesting today...

[Guest guest]

HI,

I have had the surgery and so has my son. Have fun the night before the surgery.

We had a blast driving through the Hollywood hills looking at a map of the

star's homes. My son said it was the best thing we could have done for him to

keep his mind busy.

Buy a cast guard for showers. Ours was $20.00 and worth a million

Try to remember that it's a great feeling to have it over and behind you.

[Guest guest]

Hi,

My son had botox in his legs then two weeks later he wore cast on his feet we

went in every week to put new ones on and they helped stretch his achilles out

maybe you should talk to a dr about that. We go to scottish rite hospital in

dallas texas. he then wore the AFOs because he could get his feet out of them

before.

[Guest guest]

I believe my dr told me wearing AFOs at an early age will help prevent or lessen

the tendons from contracting. I have a friend who had this operation at a young

age and it helped alot. He did end up in AFOs.

The operation bought him some time out of them but eventually he

needed them again and still wears them today. Three of his 5 kids have CMT. He

started them all out early in AFOs. After a few years they are out of them for a

while. His oldest, a daughter, needs them but is putting them off as long as

possible. She does ballet which may have helped. But she is now starting to fall

at school some. It's now down to being a girl and not wanting to look different.

None of his kids have had the operation that he had. They just take it one day

at a time. Even with AFOs his kids are active, playing summer baseball in youth

leagues.

[Guest guest]

Thanks ! We will keep that in mind! Having to this twice is mind-numbing

to me, but is facing it like a trooper! Great idea about the shower

guards too! I appreciate it.

[Guest guest]

Thanks for the suggestion. Unfortunately my son had a severe reaction

to his 2nd round of Botox injections and the docs say we can't use it

anymore. He had heel cord surgery at age 5 that lasted only for a

year. His CMT is very advanced in his legs. I am so glad that the

Botox and casting is helping your child! It's great when things

progress the way we need them to.

[Guest guest]

Hi,

I can't offer any info on the AFOS but my son had surgery 6 months ago to

correct a pez cavus on his one foot. I don't remember the medical term but he

had a tendon transfer done, a piece of bone remove from his ankle and a pin

inserted to stabilize it, and a piece of bone behind his big toe was remove to

allow the foot to lay flat and he had screws inserted to stabilize that. If

this is similar to what your son will be having done I'd be glad to give you

additional info.

Carmella

[Guest guest]

Hi Carmella

Your sons surgery sounds different from what mine will have. He is

going to have his ligaments lengthened in his arch area, and then his first

through fourth metatarsals will be cut and repositioned (I

believe pinned short-term) and he will also have his achilles tendon

cut to lengthen it. I am interested in info about your sons surgery as it

sounds like a different approach to achieve the same thing...a flat foot,

reduced or eliminated toe walking. Please let me know more...

Thanks so much