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Re: Giving up AFOs

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Hi Elaine,

I gave up on two orthotists. The first guy insisted

that I go home with AFOs that made my feet bleed. I

went back to the office at least a 1/2 dozen times to

have them reshaped. Another orthotist in the office

told me that repeated reshaping broke them down

structurally and that I should probably be recasted.

Years later I had them replaced at a different office.

The second guy was ok, but when I needed to have the

hinges repaired (they tore in 1/2, and the gromets

kept coming out) it was hard to get a hold of him.

The 3rd guy was good. No problems - no reshaping - a

" normal " gait.

I don't know if it is better to wear them all the time

to prevent further deformity or to go without them to

prevent atrophy.

I wear them when I am out and try to go without them

at home.

Chris

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Hi

Thank You so much for replying. I am really confused. I used to walk my

neighborhood 30-40 minutes a few days a week and now wearing just wearing one

plastic no hinge AFO on the left foot has really altered my gait in not such a

good way. It's hard to explain but my foot doesn't hit the floor like it used

to and I don't wear it at home at all. I actually don't even feel I have a good

heel/toe gait with it so I made with appointment again with the Orthotist to try

and explain that I feel like I have lost my push off ability and then I feel

like I need to use a cane with it sometimes too. So I just want to keep the

strength I have and build more in my leg and be able to wear a plastic AFO to my

advantage. Thanks again for reading and responding. Sometimes I wish I never

even got one. :)

Elaine

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I couldn't walk in them. They were awful. I tried to learn how in the orthotist

office it was awful. He kept insisting that I was the problem. I was not the

problem - he made them all wrong.

I wear a Muller ankle brace from a sporting good store that helps with drop

foot. I also hold on to any and all shopping carts.

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Hi Elaine:

I " gave up " AFO's several years ago and don't regret it. I

had been wearing AFOs and working out and I feel that they actually

caused my CMT to get worse much more quickly; my balance

deteriorated, muscle atrophied and I got very dependent on them.

Once the muscle is atrophied, it unfortunately does not come back no

matter what you do (at least this has been my experience).

Nonetheless, regular exercise has helped me a lot; I walk my dog over a mile

daily and have also done aquatic therapy and used an eliptical trainer; combined

with vitamins and healing touch I feel that my CMT is " better " than it has been

in years. My balance is better and I am able to walk further and fasther than I

could in the past. I still can't lift up my toes or flex my feet much but it is

an improvement.

If you need AFOs for safety, by all means, don't give them up. I think there is

always a cost and benefit analysis and AFOs

may be worth the atrophy if they keep you walking better and faster

without risk of falls. However, I am angry at many doctors who see a diagnosis

of CMT and automatically prescribe AFOs. My primary care doctor is disabled

herself due to a car accident and she told me that any brace will cause atrophy

so that you want to wait until you really feel you need it before using one

routinely.

To avoid deformities, I would urge using in shoe orthotics or

arch supports as they help the foot move more naturally but are not

as confining as a brace. Just my .02. Best of luck. :)

Marti in VA

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Wow Marti,

How did you give them up? What you said is sooo true, it is how I feel. I just

don't know where to start to give it up. I really walk funny with it on or off

and I have gotten so dependent on it and I don't like it. Oh if only I had

known this before I got one. It doesn't land my foot right and I just don't

walk like I used to without it. HELP. Thanks so much.

Elaine

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Hi did you wear them at all? I have one I have been wearing for almost two

years and sometimes I feel it is doing more harm than good. I really do not

know how to just stop wearing it. It is the usual plastic all one piece

cumbersome one for my left foot and I just don't know how to give it up.. Oh I

wish I had never gotten one. Elaine

MommyToAdam@... wrote: I brought some home and threw them away the

next day. I hated them.

Elaine

---------------------------------

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Elaine,

It's much better to have an AFO with an ankle joint. I couldn't stand

the one piece AFOs my orthotist tried on me first. Once I got some

with ankle joints it was all the difference in the world. I think you

just need some AFOs with ankle joints and some that fit better. The

newer ones are shorter and cut out more so they are cooler to wear.

Maybe you need a new orthotist. It's like medicine, if your doctor wants you to

wear one or a pair, it would be better for you to wear them. You just need some

that fit and have ankle joints.

Bob

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Elaine,

I gave up AFOs. I wear this soft strap that goes around you ankle and attaches

to laces you attach to your shoe. That prevents the foot drop. If you want more

info. on it, let me know.

Dawn

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Marti,

Thank you so much for that input. I have worn AFOs for many years and can

barely walk now without them. After reading what you wrote, I am disappointed

that my doctor did not try therapy with me first - I have atrophied terribly.

So no getting it back, huh? I appreciate your help. I cannot afford therapy,

but I may be able to swing the aquatics again.

Ann

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Hi Bob,

Did you get the one with ankle joints for the man in Tampa? He fit me for one

but he insisted it had to be all the way up the leg and hard, no flexibility at

all and extremely cumbersome. I am just so confused. Thank for your input.

Elaine

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Elaine,

I got mine at Bader Orthotics from Wade Bader. He made mine the new

shorter length and with a shorter footplate. As him about those for

you. I love mine. They are cut out enough so they aren't hot. Tell

him you want some like mine.

Bob

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Hi Elaine,

I buy the active ankle. If you go in to a sporting goods store you can try them

on to find something that works. I have told a lot of CMTers about Mueller and

several people have said that they love them as much as I love mine.

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  • 4 weeks later...

Hi Marti in VA, :)

You know I am going over this email you wrote and really wanted to hear from you

again. So you gave up AFOs? You have drop foot? I really feel my walk has

gotten worse not better and the balance also, worse. How do I give it up? I

just have one for the left foot. I have gotten very dependent on it and want to

go back the way I was without one.

Oh I have taken some good falls in my life but I honestly feel the AFOs that

have been made are not giving me security that's for sure. I hope to hear from

you again.

Elaine

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