AFOs vs In-Shoe orthotics

[Guest guest]

Folks:

It’s getting a lil tricky for me now. Gretchen, Robyn,

Melody, Ben and of course others – I need some feedback

here.

I saw Dr. Kiril Kiprovski, a neurologist in Manhattan.

He, after examining me, suggested AFOs.

I am confused whether I should go for AFOs or foot

orthotics that fit inside shoes. He may be right, I am not sure.

What I feel is that for now, even foot orthotics might

do the trick. I am a little hesitant to start on AFOs

because I still walk with without them and I fear that

once I start on them, there will be no looking back. I

feel that in-shoe orthotics along with physical

therapy will rather improve my condition, or say put

in on hold. Right now, my lower legs are getting

thinner and I am having poor balance, not too poor

though. Getting fatigued earlier than usual!

I heard AFOs restrict normal movement of feet. I don’t

have much to lose. I want to keep AFOs as a last

resort. I am not sure if it is the right thing to do

though.

Another thing is that he wants to conduct full fledged

EMG and NCV tests on me. Last time I had it done was a

month back where previous doctor didn’t go too far as

I wasn’t feeling very good. Dr. KK says he will be

able to understand condition of my nerves better after

these tests. He, however, admitted that even after

these tests he may not be able to help much.

I am so confused. Need some light.

Sameer

[Guest guest]

Sameer,

First off, I would encourage you to express your feelings about the AFOs

or Orthotics to Dr. Kiprovski. I'm pleased you found a doctor, now's the

time to build the relationship to one of trust.

You know I wear custom made in shoe orthotics. This is because I am a

toe walker. I have leg muscle and in aquatics I keep working on those

muscles. I've also been biking and walking in sand since I was a child for my

legs especially.

AFOS help people with footdrop. You know I refused them when I was 21,

knowing I was a toe walker and didn't need them.

So, have you got footdrop or do you walk on your toes?

Yes, my orthotics and physical therapy/now weekly fitness is what works

for me. Hard to say what will work for you. But remember, both are

tools to maximize your quality of life. That's what counts. Trusting a

good doctor is very important for a patient and sucess. Trusting a doctor also

means respect.

Again, about the EMG/NCV tests. I would encourage you to again, talk

your concerns over with Dr. K, but like I said, now you've found a

doctor who will work with you - trust in the new relationship. Yes,

after the EMG/NCV Dr. K will have a better understanding of your nerves

and CMT. I'm certain he'll have some insight for you. Whether it's AFOs or

in-shoe orthotics, that's help right there.

If your fatigue is so great, it is possible these adaptive devices will

help. Sometimes fatigue is about a need for better pacing of ourselves

throughout the day. Or Dr. K may be able to prescribe a medication, a diet, some

Physical Therapy, or special exercises suitable to YOU. Why not ask Dr.

K about Vitamin C for you?

Just my thoughts/feedback for you. Trust and respect Dr. K. If you still feel

uncertain, seek out a 2nd (medical) opinion.

Gretchen

[Guest guest]

Sameer,

I don't think in shoe orthotics would do anything for you. They are for other

things than CMT. If your dr says you need AFOs - that's what you need, orthotics

are for fallen arches and foot pains. AFOs will give you support and improve

your balance. They are what is needed for CMT.

Bob

[Guest guest]

Bob,

My orthotics help correct my toe walking gait (which is CMT) by

forcing my heel to hit the ground first, followed by my toes. My

orthotics give me total foot support and improved balance. They are

made for my CMT feet. I don't have fallen arches, just off and on

burning feet, but that can happen even barefoot. My orthotics are

lined in suede, which, over this past year, has decreased the burning

somewhat and the suede is soft on the bottom of my feet.

Doctors can be wrong on alot of things. It is important to find good

ones and to trust and respect them, but at the same time, ask

questions and share your feelings about their prescribed tests,

treatments and ideas with them.

Gretchen

[Guest guest]

Sameer,

I've had my AFO's for almost 2 years, was

losing a little calf muscle before I started with them

and guess what? I'm still losing a little calf muscle!

Not bad. My braces are articulated, they have a joint

let lets me flex the feet,they even help me raise the

feet with a spring, but limit the motion the other way

so that I have more stability. They allow no sideways

motion at all no more pesky sprained ankles. I can

work a full day without feeling like I need to go to

bed, my balance though not good is much better with

them. The nice thing about AFOs is that you can

always take them off! My shoes last much longer too!

Jim Nash in Ohio

[Guest guest]

Gretchen, Bob, Jim:

Thanks a lot for writing. Grtetchen, you are right

that trust is important in a doctor-patient

relationship. Being a son of a doc, I fully understand

this.

Currently, I am walking on the outer halves (on right

side of right foot and left side of left foot) of my

feet. Can't even think of walking on slippery floors.

My ankles aren't being fully used. To some extent, I

lift my leg from thighs to clear the ground. When I

insert tissues inside my shoes, I feel my feet are in

place and have better balance. But obviously, this is

a temporary solution. To me, it looks like that

something that fits inside the shoe will be fine for

now.

Like I said, I am not yet a severe case. But want to

take all preventive measures to delay progression in

my legs and feet. I am okay both with in-shoe

orthotics and AFOs. But, right now balance is not a

major concern. I just want to walk the right way using

all the required muscles.

AFOs, I think will restrict normal/regular movement of

my feet and/or legs. Although there are flexible ones

out there too. My sister is using such in india.

I am repeating - I want to walk the right way. Balance

is not the concern. I just don't want lose muscles.

Gretchen, please write back again. Your feedback is

very important for me and my sis Reema.

Thanks,

Sameer

[Guest guest]

Yep, yep, yep, and yep to everything that Jim said. I have also

been wearing my AFOs for about 2 years (well except for that 4

months of " *@#%^ no. I won't wear them. " ). I also have an in-shoe

orthotic in the left shoe since I have flat feet. Both have

advantages. I wore my braces for about a month before they got the

in-shoe done. I noticed a big improvement in energy with the in-

shoe.

If you are dealing with a lot of fatigue and ankle pain, I would

highly recommend getting AFOs. Like I said above, I really resisted

my AFOs for a while, but now realize that my doc was right about

them.

Lynn