Re: AFO-? I have read the post back to May 07 -still have ?

[Guest guest]

,

Bear in mind I don't have footdrop, but I looked at your pictures and

wondered if in-shoe custom orthotics would work better for you than

AFOs. You appear to have good leg and ankle muscles, at least from

what I can tell from the photos.

When I was about 20, the MDA clinic said I needed AFOs. I knew I

didn't, and never went back. I kept up with swimming, biking and

horseback riding. When I was about 45, my Internist suggested I

should try some orthotics, and referred me to the BEST orthotist for

an evaluation. (The Internist himself wears orthotics, as he's a

runner and needs the support)

So I went to the recommended orthotist for a complete evaluation, he

measured my legs, hips, ankles,examined my feet, watched me walk,

run, bend, move in general.

From that evaluation, and in consult with the Internist, Stefan was

able to make me the BEST in-shoe orthotics. I don't have leg or ankle

atrophy that causes footdrop. I can freely move my ankles in circles,

and can pretty much still wiggle my toes. The way these orthotics

were made comforms to the exact needs of each foot. They changed the

way I walk, to a more stable, fluid gait and also rebalanced my

weight and centered my walk. I felt " springinger " and almost lighter

on my feet with these orthotics from the start. Now, 10 years later,

and with only a few minor adjustments, these orthotics are still

wonderful and I continue to have a stable, balanced gait and stance.

From everyone here I have learned that AFOs can be very helpful, and

you seem to know how an AFO gives you a good quality of life. That

being said, you should be less fatigued, but alot of the fatigue

issue depends on how active you are, whether you push yourself or

pace yourself, how your muscles work in general.

Have you had an Board Certified orthotist evaluate you and make

reccommendations?

Some people swear by the carbon fiber AFOs, others hate them.

Paolo has a new book coming out soon. However, it is written in

Italian, and I have suggested that an English translation might be

something to think about. From his first book I learned an incredible

amount of information about the nerves, especially the section on

reinnervation and collateral sprouting.

Gretchen

[Guest guest]

Hi ,

I have two sons in AFOs. I wear the Muller brace from a sports store.

My kids are very active and to keep their lifestyle AFOs were the best choice.

They do weaken the muscle. It's a use them. If the AFO is doing all the work you

will lose muscle from in activity.

Hopefully people with CMT start with a less ridged brace to allow our

muscles to actually do some work. We had a really bad brace guy and he decided

more ridged was the way to go. ( I didn't know anything about AFOs at the

time.) The bad orthotist had my boys in a style brace that is not used for CMT

kids. It wrapped around the top of the foot and was up to the knees. So now Adam

is stuck in a ridged brace without any muscles.

Our new brace guy is well aware of what happened and is working slowly to

correct the damage if it is at all possible to correct.

I hope I helped you and didn't confuse you more.

[Guest guest]

,

That's a great post. Like everything there are good AFOs and bad

AFOs. I know I have had some of both. My orthotist tells me the best

brace is the least brace, and that's true, just like you found out. My

guy has me in short AFOs with short footplates and I am able to do

pretty much whatever I want to do. Plus since they are short, they

look fine with shorts.

AFOs should allow you to do what you want to do not hinder you. With the Gillete

joint that gives assist for footdrop they are great for my CMT. I have friends

who played hs sports, football and baseball, in their AFOs.

I was able to blend in with my friends in hs with my AFOs and had a great time

in school. I'm sure your sons will too.

Bob

[Guest guest]

Thank you ladies for all of your thoughtfull insights - I have a bag

full of orthotics 4 pairs made in last 2 yrs and yes 2 pair from a

Board Certified orthotist -and a PhD physical Therapist. Problem is

I think they made my Buritis in hips worst, ITB SO TIGHT, and my si

more unstable. I am 45 and I have worn orthotics since I was in 9th

grade when my mom noticed my hammer toes and funny looking feet. I

also bought those Mueller braces/ straps a few years ago. They

didn't work very well in shoes w/ my orthotist and I needed to pull

them pretty tight in addition they were thick enough they created

pressure on my feet. The referrence's in past postings for all those

products and ideas are so helpfull. It really made me feel better to

have tried some of the things that worked for other people.

In summary the Board Certified orthotist just listened to my

personal observations - inability to walk for extended time without

tiring and stumbling. Any other ideas?

[Guest guest]

,

Some suggestions:

Find another orthotist. One who will listen to you AND your needs, plus

give you a complete evaluation, meaning, he/she will watch you walk,

run, bend, turn, etc. to see exactly how your entire body moves from

your feet upward. One that will do the BEST job to recomend what would

work for you and WHY it would work, and HOW.

As for the bursitis, it can be treated. Have you considered seeing a

Rheumatologist? You may have an infection - more on B at

http://www.mayoclinic.com/health/bursitis/DS00032/DSECTION=1

Consistant stretching exercises will also help with tight muscles.

Gretchen

[Guest guest]

Hi Kim,

My name is Elaine and I am 59 years old nad have been trying for 18 months to

get an AFO made correctly for my left foot drop. I live in Florida, and have

had 3 made (that I think may be hindering rather than helping) and now am trying

one of those carbor fiber Matrix black ones that cover your shin in the front of

your leg and just straps in the back. This one hurts the bottom of my foot

alot.

I feel like trying these AFOs has really started atrophy. The Orthotist I am

seeing now is the FIRST one that has really watched me walk. Front, back and

even watched me turn around. I just want one that will help that's all and I

have never had one before in my life.

Thanks for reading and I'm just going to keep trying to find one that will help.

Keep me posted, and good luck.

Elaine

[Guest guest]

Hi Elaine,

This is the site for the custom composites, just so you can see what they look

like,but always check out as much as you can,there is so much out there but I

think it all comes down to a good and caring orthotist. http://www.cc-mfg.com/

good luck

Lainie