Atrophy

[Guest guest]

I just read an e-mail from someone that stated they got atrophy

from wearing AFOs. Is that possible, and if so what can I do

to slow down the progression? I've been wearing AFOs for 8

months and have noticed no additional atrophy in my lower legs.

They help me tremendously and I don't want to stop wearing them

out of fear of losing muscle mass.

[Guest guest]

In another CMT group we had a survey. The consensus was that if a person's

calves are going to atrophy, they will atrophy with or without the AFOs. The

person is wearing the AFOs BECAUSE of the weakness, not that it is causing

it.

In many families, if one child wore AFOs and the other one didn't, eventually

both had atrophy anyway. Or, if one was less severely affected his legs

showed that.

Many adults reported they had very atrophied calves even though they had

NEVER worn AFOs. Eventually, they did get AFOs because they were struggling

so much to walk, but the AFOs came AFTER their calves were totally atrophied.

The muscles atrophy because the nerves are dying, not because of the AFOs.

Eventually, many CMTers have atrophied muscles in their hands. They had never

worn AFOs or anything like that on their hands. The muscles atrophied

anyway. It's the nerves that are failing.

We are different in many ways, so some CMTers may never need to wear

AFOs.while others, even in the same family, do need to. They may help some

people more than they help others.

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

I've been collecting comments by various AFO users around the world,

regarding atrophy. Each was written by a different person.

---=============---------=======-----------

I wore a AFO on right leg for 3 years before my left. When went to ortho. to

have left leg I checked because having trouble with tripping. Dr. said left

is atrophying and I WASN'T wearing one on that leg yet. He said they will

atrophy whether wearing braces or not. Mine aren't stork legs but kids just

say skinny. I do try to exercise to maintain hopefully.

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I've worn AFOs for over 25 years. I too have the indentations. It's the

muscles in the leg that lift my feet and help me to walk. The whole purpose

for AFOs though, is to aid in walking and diminish the falls. I don't wear my

AFOs in the house and that is when I tend to fall more. The atrophy in the

legs are inconsequential compared to what the effects might be without the

AFOs. I broke my foot (first bone break ever) when I wasn't wearing my AFOs.

If you are worried that the leg muscle's with atrophy because of the AFOs, it

will not affect them any more in the long run. The more drastic results would

come from not wearing them.

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I have not had significant calf muscles since I was about 16 years old. Today

at age 31 they are nearly non existent. I did NOT wear AFOs until age 30. I

do not believe there is a correlation between AFOs and small calves.

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No, I don't believe wearing AFOs is the cause of the 'stick' legs, from

evidence with my own children. Two of them have stick legs. Only the older

son, age 50, with stick legs, went into AFOs just two years ago, but had the

thin legs 15 to 20 years before. He had one leg lose all muscle years before

the second. The younger son, who wore AFOs for years, did not have more

atrophy than his older brother who didn't wear them.

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I have no calf - and noticed at age 13 that the back of my lower legs were

" flat " and knew then that I had CMT (runs in our family). So, no, I don't

think AFOs cause the flat lower legs (is this better then stork?), and I

didn't wear any kind of brace until years later. Don't you think this is

just another one of those things that affect some of us, and not the others?

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

Years ago I had a brace on right leg, then he sent me to a ortho and a

physiotherapist. My left was atrophying and I was NOT wearing a brace on yet

on that leg.

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

It is due to the wasting that we have to wear the AFOs. It's a catch 22.

Barry

If you don't need them don't wear them. What works for one CMTer may not work

for another.

Kat

Seattle USA

" Watch the television news and find out our highways aren't safe, our streets

aren't safe, our parks aren't safe.....but under our arms we have complete

protection! "

http://www.icewindow.com

KathleenLS@...

[Guest guest]

Greetings

I had written in an earlier post that I felt wearing AFO's too

early accentuated my atrophy. I did not mean to scare anyone else away from

AFO's by any means. I do realize that my muscles were likely to atrophy

anyway, and I also feel strongly that if AFOs are needed, they should be worn

as there benefits outweight the deficits.

Nonetheless, I still feel that in my specific situation, the

AFO's did hasten the process. Please allow me to explain why. I have " off

the shelf " AFO's with NO HINGE at the ankle. In Grad school a few years back

I thought that it would be better for my CMT feet to begin wearing them all

the time (I had not had a lot of falls or difficulties prior to this). I had

the braces but didn't wear them much. I got into a phase where I went to

the gym 3-4 times a week and exercised WITH MY AFOs on. I used a stair

stepper, treadmill and other equipment. I did this regularly for several

months at the end of which my balance had deteriorated drastically . I have

spoken with a doctor about this and learned that exercising my thighs while

my lower legs were braced in AFOs increased the disparity in the strength

between the two without the brace on. My unhinged AFOs braced more than

just the muscles affected by the CMT, but most of the muscles in my lower

legs. During both of the two periods when I wore AFOs continuously for

several months I experienced the greatest amount of atrophy in my calves at

this same time or immediately afterward. When I did not wear them, I feel I

still had atrophy, but at a slower rate

My Primary Care Physician wears a brace on her foot as well, due

to a serious injury years back; she herself espoused the above theory and

cautioned me to be careful in choosing AFOs. It is not AFOs themselves that

could be a problem, but the type. She said it is usually preferable to get a

hinged ankle when possible. It is VERY IMPORTANT to wear a brace IF you

need it, but probably not a good idea to do more bracing than necessary

because then all the muscles in the area, not just those affected currently by

CMT, are using the brace to help do their job.

I began wearing in shoe orthotics instead of AFOs a bit over a year

ago. I now go to the gym again, but without the AFOs. I noticed that I have

been able to regain some of my balance and I feel like my legs are getting

noticeably stronger, I walk a LOT faster and my endurance is improved.

I imagine that it may be only a matter of time before I need AFOs

again but really need them for safety and mobility. When this occurs I do

plan to get them, but I will do whatever I can to seek out the type of AFO

that allow for the most movement in unaffected areas. It seems that the

bracing industry has not advanced as much as it should in the past twenty

years or so. I know that the Virtual Gait network and others are designing

more advanced braces. I just wish that these more advanced disigns would

become more affordable and more readily available to the average CMT'er.

Peace, Marti

[Guest guest]

Muscle Atrophy

Definition : The wasting or loss of muscle tissue resulting from disease or lack

of use.

Overview and Considerations

The majority of muscle atrophy in the general population results from disuse.

People with sedentary jobs and senior citizens with decreased activity can lose

muscle tone and develop significant atrophy. This type of atrophy is reversible

with vigorous exercise. Bed-ridden people can undergo significant muscle

wasting. Astronauts, free of the gravitational pull of Earth, can develop

decreased muscle tone and loss of calcium from their bones following just a few

days of weightlessness.

Muscle atrophy resulting from disease rather than disuse is generally one of two

types, that resulting from damage to the nerves that supply the muscles, and

disease of the muscle itself.

Examples of diseases affecting the nerves that control muscles would be

poliomyelitis, amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease), CMT,

and Guillain-Barre syndrome. Examples of diseases affecting primarily the

muscles would include muscular dystrophy, myotonia congenita, and myotonic

dystrophy as well as other congenital, inflammatory or metabolic myopathies.

Even minor muscle atrophy usually results in some loss of mobility or power.

Alternative names : Atrophy of the muscles, Muscle wasting, Wasting

Common Causes:

some atrophy that occurs normally with aging

cerebrovascular accident (stroke)

spinal cord injury

peripheral nerve injury (peripheral neuropathy)

other injury

prolonged immobilization

osteoarthritis

rheumatoid arthritis

prolonged corticosteroid therapy

diabetes (diabetic neuropathy)

burns

poliomyelitis

amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease)

Guillain-Barre syndrome

muscular dystrophy

myotonia congenita

myotonic dystrophy

myopathy

Home Care and Treatment

Application of moist heat is recommended along with whirlpool baths and

resistive exercises.

Unless prohibited by the doctor, active exercises are recommended where a full

range-of-motion is achieved. Exercises using braces or splints are recommended

for those who cannot actively move one or more joints.

[Guest guest]

Hello

Have you been tested for CMT? You definitely have several symptoms, so that

should be one of the things you might want to discuss with your doctor.

Mark

[Guest guest]

,

This also could be an entrapped nerve, since it is only on one side. You should

see a neurologist.