Orthotics, PT, Knee issue, etc.

[Guest guest]

Hi Donna,

 

You’re welcome for the compliments.  You deserve it!  Great job with the

charity fundraising you are doing too!!!

 

In response to your comments…

 

Orthotics

 I did have the foam orthotics at one point years ago.  I had forgotten about

those blue ones.  I agree they were easier to wear, but they really didn’t do

anything for me.  I had to pull out the insoles of my shoes to be able to wear

them and never saw any advantage.   Personally, I found choosing a supportive

shoe with a flat, wide base to be more helpful.  But that’s just me.  I’m

not discounting that others may find them of value.

 

As for the push brace, that looks very similar to the ankle brace I have that

worked well when I was more active.  Although, the push brace looks like it

would be better than what I have, since it’s adjustable, so I will order one

of these.  Thank you!

 

As for insurance coverage, most private insurance companies here in the US will

pay for orthotics if they are custom-molded to the individual, though there is

still usually a deductible/coinsurance amount just as there is for other

expenses.  However, Medicare (our government run program) doesn’t cover these

for CMT patients, only for diabetics with significant foot disease.  So…write

to your congressman…everyone!!!  We need to advocate for ourselves on this

issue, just like the diabetic foundation did for their constituents!

 

IMS

May I ask what this is?

 

Knee Issue

I looked up the condition you have and I don’t think we have it in my

family.  I believe my knee issues were secondary to CMT.  The issue being a

curved ankle/high arches on my right foot as well as weak quads.   The knee

cap on the other leg (with the normal-looking foot) doesn’t slide out of

place, so the CMT foot must be the primary issue.  The subluxation problem was

fixed with emergency surgery when I was a teen and I also had a second surgery

10 years later to try to improve pain under the damaged knee cap.  I lost

muscle with the second surgery that I was never able to get back.  Testing

showed leg was 50% strength of other leg after a year of PT following the

surgery, which I now believe was related to having CMT.  As I previously wrote,

the dancing and special exercise from my personal trainer did help stabilize the

knee for many years, but now I’m to the point where I can no longer

exercise.  In recent years, when I try to do any

activity with my leg, i.e. walk on a treadmill for 5 minutes (slowly/no

resistance/holding on tightly), the fatigue in that leg will last for days and

the knee will give out backwards (hyperextend) and have a feeling like it’s

going to give out.  This is a recent thing, which I believe is due to the quad

weakness, i.e. CMT related.   I’ve reached the point where there are no more

exercises I can do to help the situation.   Perhaps a brace may help.  I need

to check into that.  It has been 30 years since the initial injury/surgery, so

that’s not too bad really.  I did what I could and got more mileage out of it

than many non-CMT people get out of a bum knee.  J

  

Insurance Coverage for PT

Physical therapy is covered on nearly all public/private insurance plans in the

US.  However, the doctor has to refer the patient for the PT.  Many doctors do

not believe PT is a treatment for CMT, so they will not prescribe it.  When a

patient asks for it, the doctor may simply say, ‘it won’t help’.   

Another concern is that most insurance plans have limits on the number of PT

sessions (12 or 24 visits per year, for example), so they will only cover up to

this limit for a specific condition unless the doctor can explain how additional

visits will result in “significant improvementâ€.  In other words, the

insurance company doesn’t want to continue to pay if it the PT isn’t helping

much.  Makes sense, so we need to show there is evidence of significant benefit

that can be presented to the insurance companies.

 

If research doctors such as yours can establish that there are short-term and

long-term benefits to physical therapy, then perhaps primary care doctors will

begin to prescribe it where appropriate for CMT patients and insurance companies

will cover it, even after the annual limit has been reached, when the patient

needs it.

 

Therefore, I see great value for the CMT community in the work you and your

doctors are doing.   So, again, ‘thank you’ and please continue to keep us

posted with your progress and events.