Re: knee caps/feet surgery/orthotics

[Guest guest]

Elaine in Florida,

As a child I walked on the outside of one foot, the other rolled in, and

I did this 'tip toe'. So I had tendon surgery when I was 12 to correct

this. And it did. My feet have always been short and wide, so always

bought wide shoes. In the 70's I think I had every style Sybicca made

(cool ones then!)

I begged doctors to straighten my toes as I got older, but had about 5

or 6 opinions, all of which agreed due to the lack of muscle in my toes,

the surgery would only last for 10 years and need to be redone.

In my 20's two ER docs putting my kneecaps back in place said I needed

surgery. I sought two orthopedic opinions who said no surgery was

needed.

To this day my feet are in decent shape, although the right one has

taken more of a hit CMT wise. About 9 - 10 years ago I started wearing

custom made orthotics inside my shoes and not only have these saved me

from surgeries, I have walked and traveled and worn them all over. I

still have hammertoes, but right now the foot issue for me and surgery

would be more 'cosmetic' in nature as other than burning, my toes/feet

do not hurt to walk. My best shoes now are New Balance because I like

the way they are made on an S-1 last and the rollbar stability web.

If I EVER consider foot surgery again, I will get 4 or 5 opinions.

~ Gretchen

[Guest guest]

I had my toes straightened about 6 yrs ago. The BEST surgery I've ever had!

You don't need muscle for this one. The bone is fused together and kept in

place by pins for about 6 weeks. t makes a big difference with balance; believe

me!! My 2 children also had it done.

Barb fl.

[Guest guest]

Hi Gretchen,, Wow, thank you so much for sharing your experience.

I really love hearing from all of you and knowing my family is

not in this alone. I wish my youngest daughter didn't get this

genetic thing, but she did and I just want to do right by her..

My oldest daughter doesn't seem to have any effects of CMT...

Thanks again... Elaine

For a look at Rehabilitation Management of CMT, try this book

http://www.aicmt.org/books.htm

[Guest guest]

Elaine:

Hi. I know that it is really really difficult to watch your child suffer

with this disease. It's hard enough to deal with it for ourselves, but it

can't compare with the heartache it gives you to watch your child struggle

with it. But, they are stronger than we usually give them credit for, and

like us, they are survivors. My son says " yeah, I wouldn't go out and

actively campaign to have drawn the short straw on this, but hey, it makes

me a stronger person and that's cool " . So, I guess with the bad there is

good. Also, about surgery, avoid it as long as possible. I had an ankle

fusion that was unsuccessful. In the end, I went thru alot of pain and

emotional trauma and physically nothing improved by having the surgery. You

can't imagine how many times I've said I wish I hadn't done it. All I ended

up with were alot of hospital bills and some extra weight from sitting

around so much. I guess the only positive action that resulted was that I

appreciate my AFOs alot more now. Well, take care and good luck.