KAFO & SWELLING help, please...

[Guest guest]

Hello Everyone:

I am doing great with my new Helios AFOs, and I'm sorry I haven't

had the time to tell you all about my Las Vegas experience with super

nice Mitch Warner at Ortho Rehab Designs. In short, it was all

fabulous, and for me these custom Helios are miraculous & life

altering! More on that later.

Right now my concern is my mother. She is having so many great

difficulties due to her CMT & lots of other health problems.

The orthotists we have available close at hand have not been able to

give her what she needs that could really help her, so she is left

mostly sedentary, and confined to a wheelchair & scooter, and she

cannot drive right now it's so bad.

I am looking for some " off the shelf " KAFOs that she can wear

temporarily, until I can find her a good, reliable orthotist out of

town to have her some custom made. Poor thing has such horrible knee

hyperextension that it is extremely difficult simply to get in & out

of her chair or scooter to sit on the couch or even get in bed or go

to the restroom. Anyone have any experience and/or advice for non-

custom KAFOs?

I feel so helpless and hate seeing her in such pain & struggling so

much. She is feeling very defeated & ready to give up, and the

doctors are seeming to give up too, because they can't figure out

what she needs.

She's also experiencing SEVERE swelling in her legs below her knees &

her feet...so much so that water blisters came up and she got an

infection. She takes lots diuretics, & they've done tests galore, and

there is (thankfully) no congestive heart failure or any other

obvious reasons for this extreme edema.

Does anyone else have this issue, and what do you do to ease the

symptoms?

Any & all info, advice, encouragement...anything you can offer on

KAFOs & EDEMA will be greatly appreciated. I sincerely thank you in

advance, and I look very forward to hearing from you.

Thank you all so very much.

Peace & Blessings,

Holly Waters

Corpus Christi, TX

[Guest guest]

Holly,

Instead of " off the shelf AFOs " , can you take your Mom to a MDA

clinic to get KAFOs made to fit her? There must be one in Houston, if

not CC. " Off the shelf " devices can do more harm than good.

As for the swelling, elevate the legs above the heart while lying

down. Elevate the knees higher than the hips and elevate the feet

slightly below the hips. Physical Therapy/Exercise the legs. This helps pump

fluid from your legs back to your heart. Wear support stockings (sold at most

drug and medical supply stores). Try to follow a low-salt diet, which may reduce

fluid retention and swelling.

Certain medications may also cause legs to swell:

Hormones like estrogen (in birth control pills or hormone replacement

therapy) and testosterone

A group of blood pressure lowering drugs called calcium channel

blockers (such as nifedipine, amlodipine, diltiazem, felodipine, and

verapamil)

Steroids

Antidepressants, including MAO inhibitors (such as phenelzine and

tranylcypromine) and tricyclics (such as nortriptyline, desipramine,

and amitriptyline)

Gretchen