AFOs

[Guest guest]

I for one will be hoping for the best for you!

Susie

--- classicb@... wrote:

>

> Hi Everyone,

> I couldn't let this subject pass by without letting

> you know what I've been

> going thru getting someone who would listen to me

> and understand my needs.

> For those that have been on the list for awhile,

> might remember that it has

> taken me 3yrs. and 3 different companies to try and

> get this right. My braces

> are the " old metal type " attached to one pair of

> shoes with the orthotics inside.

> As a matter of fact, I have another appt. this

> Thursday as my ankle is red and

> sore from trying to wear them. He has mentioned

> that plastic afos are not for

> me cause that would restrict my ankle movement and

> doesn't think they would

> work cause of my severe turning of the ankles, and

> would make my condition speed

> up. I sometimes feel like I must be the worst case

> in history, although listening

> to some of you, I don't think so. I use a cane

> (different colors to match my

> clothing), also a walker with a seat when I'm going

> a long ways. When I see

> my Neuro in March, I'm going to swallow my pride and

> ask about a scooter. I

> would be so happy to wear the afos if only they felt

> good. It's bad enough

> to have the pain that comes with CMT and even to

> have the added weight(5lbs)of

> metal & shoes, I would gladly be happy to be able to

> walk easier and further.

> Please keep me in your thoughts on Thursday. I'll

> keep you posted.

> Barb

> No.Calif.

>

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[Guest guest]

I dreaded getting AFOs again. I tried one on my right

foot to put off ankle fusion surgery while I finished

college. It was the kind with the 2 metal bars that

came up to my knee on either side of my leg, attached

to a heavy, leather oxford shoe. Then there was a

huge plastic " cuff " around my knee and pushing into my

knee where I bore most of my weight, instead of my

weak, painful foot. It was cumbersome, but it got me

through school. Then when I went into specialized

training in hospital operating rooms, it was just TOO

CUMBERSOME to maneuver in tight spots surrounding

patient care. So I quit wearing it.

Then about a year into my career I had about all the

pain I could stand, so I checked into another means of

supporting the ankle. I got an " off the shelf " AFO,

which never was very comfortable, so I gradually

stopped wearing it. Eventually I had the triple

arthrodesis surgery I needed all along. It was a huge

surgery, and I worked hard at learning to walk once

again. About 18 months later the pain had gotten

less, and I considered the operation a success. That

lasted for about 5 years.

Then the foot gradually began to ache and swell due to

arthritis in the one remaining joint of that foot.

After year or so of complaining of severe pain, Xrays,

and every anti-inflammatory medication under the sun,

my dr recommended an AFO. I dreaded the thoughts of

spending the money on something I probably would end

up throwing in the closet after a few months, but I

tried it. This one was custom made for me. I told

the orthotist my problems with AFOs in the past, and

he worked with me on creating an AFO that suited ALL

my needs, not just support for the foot. It was

amazing! The first time I put it on I felt like I was

in heaven! My foot didn't hurt when I walked now and

I could walk much faster! I LOVED it, and I've worn

it every day since. The AFO carried me through 2 more

years of my very busy career.

Now I am disabled from my original career in the OR,

but considering a few other careers for the future. I

am in the process of getting an AFO to fit just right

for my left foot. It takes patience and determination

to get them " just right " for ALL your needs, but once

you do have those needs met, the stability and comfort

the AFO provides is well worth it.

Incidentally I don't mind the appearance of the AFO

anymore, as most people know of my CMT at this point

in my life. I wear shorts in the summer. I've never

enjoyed wearing dresses as I always worry about

falling, so I don't miss wearing dresses as some of

you have mentioned. But I don't think my AFOs would

stop me from wearing longer, flowing skirts and

dresses. My AFOs help me to wear different shoes

besides sneakers, they mostly have to be shoes with

laces, but I have managed some thicker strapped

sandals too. It's just been trial and error on my

part over the years!

Now if I could just convince my mother!

Good day to all!

Joyce

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