looking into leg bracing

[Guest guest]

Hi,

I was diagnosed about 10 years ago with CMT and am currently looking into leg

bracing for the first time. I look forward to learning and posting in this

group.

 

[Guest guest]

:

From my experience I would speak with your PT for the best AFO that you should

use because of your unique needs.

Marin

[Guest guest]

,

Ask your neurologist and/or orthopedist for a referral to the best

orthotist/pedorthist in your area. Get a 'prescription' from her/him

for bracing, give that to the orthotist. The orthotist will conduct a

thorough evaluation of your stance, gait, etc, and the two of you

should discuss your lifestyle and needs. This is what I did. Although

the 'prescription' was from my Internist (who knows my feet) and

pointed me to Stefan Moser at Swiss Balance, who evaluated me and made

in-shoe orthotics. Because they were 'prescription', insurance covered

them.

I check in with Stefan once a year, just to see if any changes are

needed, or the top cover changed, as the foam can compact a bit. I

believe it it important to live close by your orthotist, should any

issues arise or adjustments be made to the particular appliance.

Originally, when I first got them, Stefan had to make a few minor

changes as I got used to wearing them. I was free to call the office at

any time and come in for adjustments. Having a good relationship with

my orthotist is as important as having a good relationship with my

doctors.

Physical therapists here (So. Calif. - at least the ones I know) do not

give braces to people. Instead they provide exercises for strengthening

good muscles in ways that benefit each individual. And those

individuals are asked not to wear any bracing during therapy.

Gretchen

[Guest guest]

Dear Gretchen,

Thanks for the good advice, you certainly have much experience knowing how the

process works.

I read one of your earlier post about Stefan, I live in So. Calif. as well.  I

had heard good things about the Helios, and am very interested in getting them.

I read your post that Stefan can provide a Helios like brace, so I went to his

website, and emailed him.  I let him know that I was interested in what a Helios

like brace he can provide, because if I could get that type brace here, that

would be more convenient.  I let him know that I was very athletic and that I

wanted to hike, speed walk, and maybe try and run again. He emailed me that if I

wanted a Helios type design that I should go to Las Vegas.  He was very short

and direct with me in his email.  If you want I can forward you his response.

[Guest guest]

, wow, I'm shocked by his reply to you! He is so kind, this seems

so out of character for him. Just last fall, Stefan and I had a very

long conversation about bracing and the Helios system. Bear in mind

that Helios doesn't work for everyone.

Since you are so active, do you really need a type of AFO? Do you have

foot drop and/or weakened peroneal muscles? Just wondering.

Gretchen

[Guest guest]

Dear Gretchen,

I said I " was " very athletic, but I do still maintain my body.  I have a

complete footdrop (peronal nerve loss), and was evaluated by a neurologist.  I

have looked at the Helios website, and the testimonials seemed very honest and

sincere. I understand what you are saying, but does Stefan's braces work for

everyone?  I emailed a few Helios users and they rave about it.

What I honestly did not like about Stefan's response, was that I let him know

that Gretchen had posted that he can make a Helios like brace, and that I got

his website from ; and when asked about what he can make as a Helios

type...he mentioned every type of brace other than that.  When I asked him

directly, " Can you make a Helios like brace " , His response was no I cannot, and

if you want that type of Helios design, you should go to Las Vegas. He wrote

Good Luck.  I can send his response if you like.

 

[Guest guest]

In this age of 'medical tourism' here's another type of brace that have

helped some with CMT footdrop (from the UK). Info at

http://www.safo.eu.com/en/index.html