Re: I wish there was a standard of care for AFO use Who really is a AFO expert ?

[Guest guest]

Kim,

We are all different with our needs for AFOs. Not everyone with CMT

needs them too. In addition, many other persons with gait/limb issues

use the many types of AFOs. So a 'standard of care' for CMT

specifically would be a knowledgeable and certified Pedorthotist or

Orthotist. Evaluation by watching gait, hip, leg and footstrike is

always foremost with any pedorthotist/orthotist.

I don't know about Pittsburg, but my orthotist and his team in L.A. is

CMT knowledgeable and will do a complete evaluation before suggesting

any type of support or bracing. And he can make exactly what is needed

for the individual person, whether one has CMT, CP, DPN,etc. He can also make an

AFO like Helios. You can contact Stefan Moser, through his website

http://swissbalance.com or phone 800 - 800 444-7648 It would be worth it to

consult and evaulated by him.

Gretchen

[Guest guest]

Hi Kim, 

To reiterate what Gretchen said, AFOs come in a number of different styles and

purposes.  My 25 y.o. son recently got AFOs for both of his feet, and they work

wonderfully for him. 

I recently got an AFO for my right foot, and it was very different than my son's

- I have different issues.  My son lives in Pittsburgh, and I live in Wheeling,

WV, but we both are fortunate enough to have discovered Dr. DeMayo and his staff

in stown, PA. 

He is at the P. Murtha Neuroscience and Pain Institute, and specializes in

CMT.  His staff includes a physical therapist, a nutritionist and an orthotics

specialist.  I can't say enough about the difference they have made for me and

my family.

 

Mike

[Guest guest]

I have been to lots of orthotists and none were able to do anything to help

except Hanger.  I have read posts about them but I was skeptile but I honestly

can say they were incredible.  I was shocked when they said they will call me

back and actually did!  Up to now no one ever called me back and I was only at

these " Specialists " for one evaluation and then they were done with me. 

I tried the Toe Offs first which is a prefabricated brace and it didn't quite

work so he ordered the Blue Rocker another type of prefabricated braces and as

soon as I tried them on I felt very stable.  He was able to make some

adjustments and spent a lot of time making sure I had something best for me. 

The only problem I initially had with them is it didn't give me ankle support

and I was walking on the sides of my feet.  He recommended a stiff light weight

shoe and was able to modify the shoe itself to have my foot turn in wards. 

Today was the first day I spent the whole day with them including work and wow I

actually feel almost 1/2 normal.  I may need one more slight modification

because I believe I am walking slightly too much on my heel but I am sure he

will fix them.  He also said he would modify all my shoes and I could even mail

them to him.  He recommended rotating the shoes which makes sense to me.

I am happy that I finally one place who actually gave me some encouragement. 

Even if in the end I would have to keep my older plastic fitted AFOs I would

still say great things about them.  It's a shame other doctors and so called

" specialists " would give the same amount of encouragement and respect.  I would

say don't assume that plastic molded fitted AFOs would be better then

pre-fabicated ones.  In fact the pre fabricated ones are more expensive and more

durable because they use carbon fiber instead of just plastic. 

I agree we all have similar but different needs and what works well for one can

be horrible to another.  I am glad my health insurance paid 100% for these

braces.  I was close to taking a week off from work buy a plane ticket to get

the Helio's everyone was talking about. I am glad I saved like $20,000!  Hanger

actually looked into them and agreed the design was nice and he thinks its a

good brace but also felt they are not a new idea or design. 

I believe Hanger has a lot of facilities so I would certainly recommend them but

like anything else you need someone who actually cares enough to help. 

Andy

[Guest guest]

Andy:

I'm happy that you were able to get the assistance you needed. It would also be

beneficial if you found a physical therapist to confirm that your braces are

working the best for your needs. I know that you are feeling they work well now

for you now but you never know what could happen in the future. I get really

nervous when I hear people purchasing AFOs when they do not have a PT looking

over what AFO device they use. PTs are trained to know what AFOs are best for a

patient to use to affectivelly walk and maintain balance.

Marin

[Guest guest]

Andy,

Many orthotists use carbon and graphite. Mine does, Wade Bader of

Tampa. I think it's better to get an AFO that's molded to your legs

rather than a off the shelf one that might be able to be modified. It

sounds like you were lucky and your orthotist was able to modify one

for you.

Hanger is trying to dominate the market. There are good branches and bad ones I

guess. It all depends on how good your orthotist is and how much he cares.

Hanger has gone around the country buying up small orthotics and prosthetic

businesses. Sometimes the care you receive doesn't change sometimes it becomes

all corporate.

If you find an orthotist you like, stick with him. He can do wonders for you if

he understands your issues and knows what to do for them.

Bob

[Guest guest]

Bob:

Thank you for getting that message out to Andy and to everyone else that thinks

that buying an AFO or any other kind of brace on their own will automatically

help them. That is why PTs and orthopedists are so important in assisting us in

our physical therapy and keeping us safe in the long run.

Marin