AnonymousJuly 31, 2007 at 1:52 am
I am finally feeling good. It has been three consecutive days! Last week I saw a physical therapist for the first time as my insurance now covers it, and he is recommending I get fitted for braces. I was looking back at some threads on this topic and saw that a few people mentioned a website called inovative products??? I looked at the site but I’m not sure how you would go about acsessing that product instead of being seen by an orthodics person who will custom make braces. I am curious because many people seem to be happier with the website product over the custom made ones. I would like to know what others think. I have an appointment next week for a fitting and the next day will see my PT. But I don’t want to get something that will not be useful. Thanks in advance.
AnonymousJuly 31, 2007 at 2:07 am
I have two sets of AFO’s that were fitted by an orthotic certified company.
My first pair were made 4 yrs. ago – fitted for me with the velcro straps, but
they were one piece and I really felt weird.
However, my second pair has hinges by the ankles for adjustment purposes.
They force my legs on a little bit of an angle forward so that I don’t lock
my legs at the knee, causing hyper-extension. These were cast from plaster
by the professional during my inpatient stay at the hospital. He had them
finished within 3 days, came out to fit me…made adjustments…then came
out again to see if there were any pressure point areas that needed to be
filed down. Threy are perfect…
For something that important, I would highly, highly recommend having a
certified orthotic professional fit you. Others have bought them over the
internet, but I’d rather have the AFO’s fitted to my legs.
My insurance paid for them 100%. They really help me stand for quite a
while, as opposed to not using them and standing a few minutes.
July 31, 2007 at 7:58 am
You might ask about TOE OFF Brand. The ones I have are pretty light weight, fit in the shoes pretty easy and aren’t uncomfortable as far as AFOs go.
AnonymousAugust 1, 2007 at 11:14 pm
Thanks for the feed back. I think you’re right Miami Girl, Fitted to me makes sense. I forgot to ask in my post if anyone experiences the feeling of coldness in their feet and calves. Lately mine have been getting like icecubes and has extended up my leg. Just wondering.
AnonymousAugust 6, 2007 at 11:51 am
I have not had one cold while the 0ther is not, but I’m sure its as uncomfortable as hell. Lately I have been also having difficulty chewing. My jaw seems to seize up and sometimes I even have a hard time swallowing. Does this happen to anyone? I am assuming these are all things that just need to be lived with. So far I am still feeling pretty good energy wise with the same amount of weakness in my arms and legs. It helps though not to be feeling completely exhausted so these other symptoms are tolerable. Thanks everyone for putting up with me through these few months.
AnonymousAugust 6, 2007 at 7:38 pm
My best advice is to see a very very well qualified professional for your braces. Ask around. My neuro is less than impressed by my SFO, but his orthodist is intrigued and supportive. Go to someone good — a brace should not required a break-in period. Ever. Best wishes, Helen
August 7, 2007 at 7:33 am
Try to avoid the formed plastic AFOs, as they are so uncomfortable. I started out with them and had an extreme weight lose, they couldn’t be refitted so it was a waste of money, the ones I have now can handle a weight lose or gain with just adjusting the straps. Works for me!
AnonymousAugust 7, 2007 at 2:58 pm
What kind did you have? They should not hurt, feel uncomfortable at all.
If you had them fitted by an Orthotic professional, they will fit them to your
legs, adjust them where necessary…they should be molded plastic to give you support for the legs. They keep your legs and feet at right angles.
If the were not hard plastic, what would be the point? Mine were only
plastic in the back and sides with velcro fasteners at the top of the calf
and across the foot.
AnonymousAugust 7, 2007 at 8:57 pm
Well I went today before I read these posts and got fitted for my AFO’s. They made a cast of my leg and will then make a plastic cast out of that to fit me. I was skeptical at first about the hard plastic and asked about the carbonized metal ones and the ortho. explained that the ankle and calve should be suupported well. The ankle has a hinge that can be adjusted to give more mobility but he felt that with being diabetic and having CIDP the plastic ones were better because they would cause less pressure point breakdown and would support better. I agreed to them. I think I did the right thing. Besides, they are able to make them in any print I wanted so I chose butterfliles. I like the symbolism of having wings on my feet. Instead of braces we are calling them my butterfles. Anyway, the only thing now is to find how to pay the $600.00 that the insurance doesn’t cover. Any suggestions? Maybe I can have a butterfly-athon. 😉 Thanks again for your input everyone.
AnonymousAugust 8, 2007 at 11:34 am
Thanks! I’ll send a picture when I get them. Today is my first real physical therapy so I will let you know how the exercising goes. By the way, yesterday when I was getting my casts made the ortho asked me if I noticed that my toes are curling and going over my big toe. I said I have been noticing that and thought it was because I bent my big toe really badly when it got caught on a rug. He said he thought it was probably more neurological and mentioned that that is a common thing in Marie Tooth disease. So I looked that up and now I wonder what the differance is between MT and CIDP. It freaked me out a little to have my own fears confirmed that my feet are becooming deformed. I used to have really nice feet. Oh well. Thanks for the encouragement.
August 9, 2007 at 7:27 am
the first AFO’s I had were hard plastic that ran on the back of my leg from the base of my toes up my leg to below my knee. One velco strap across the top. I have toe off braces now, less to them with the same support.
AnonymousAugust 9, 2007 at 12:43 pm
Im not sure about hammer toe but the little toes curl in like cheetos and the big toe goes underneath and to the side. UGLY!! So I had my first PT yesterday and I was less than impressed. We did a little work with a big ball but while he was working with me he was not countimg so I had to keep asking how long I should keep doing what I was doing. He’d say, “well, you can stop when ever you want.” Then in the middle of doing arm band exercises he calls another patient in a wheel chair over and starts working with him. So hes distractledly talking to him and me and by the way, never even introduces us so it’s really uncomfrotable. Then he prints out the exercises and tells me to call if I have any questions. So today I wasn’t sure how many reps to do but I did between 15-20 reps for each. I feel tired but pretty good. It feels good to move my body and not be in bed so I am satisfied. I just want to ask if you wear your AFO’s everyday all day or just when you need extra support? My PT said not to wear them all the time. Hope all is well,
August 9, 2007 at 1:50 pm
I just wanted to mention that Kevie was first dx with cmt. If you would like to ease your fears, there is a genetic test available. Only certain labs do it and it is very expensive Athena is the name of the lab. If the money becomes an issue with the insurance, you can contact your local muscular dystrophy chapter and they will pick up the bill. We were told that cmt and cidp are very often confused in dx, they present much the same in ncv,emg (as did Kevin’s) The big distinction between the two was the amount of time that it took to get to the disability level that he was. That was the clincher in how I pushed to deny the cmt dx. We found a doc. that agreed and ivig was administered immediately. There would be no benefit from ivig if cmt. I cannot remember your story, did you have ivig, was there benefit from it? I had spoken several cmt liasons when we thought that was what Kevie had, and they all said it took years to get to the disability level they were at. If you do find out it is cmt, pm me. I have the # of a wonderful woman who heads the cmt help line. She can help you even if you are questioning cmt. Good luck!
Dawn Kevies mom
AnonymousAugust 9, 2007 at 3:26 pm
No…I don’t wear my AFO’s all of the time. When I need to stand, like I need
to do, washing dishes, or exercising, I will wear them. You’ll find that it can
be a little difficult wheeling around in the wheelchair using our feet to pull
us around…btw, the best exercise for the hamstrings. I wear knee high socks
with them, so they look funky…lol.
Yes, your pt will help others at the same time, however, they do keep an eye
open for you.
You do feel better when exercising…it lifts your spirits.
At night, when I’m in bed, laying on my back, I pull up both legs, at the same
time to straight up and hold them, then eventually, opening them slowly
to a wide “V”. Then, I s-l-o-w-l-y lower them…I do this 5 times each night.
It hurts, but, it strengthens my abs, so I can do much more.
AnonymousAugust 9, 2007 at 10:55 pm
Thanks Dawn for that information. I will definitely let you know if I find out anything more. And thank you Miami girl for setting me straight on the protocol of PT. I got a call today from my nerologists office about an appointment that the PT requested for me for occupational therapy for my hands. I guess because of the amount of atrophy to my thumb and forefinger area. Maybe it will give me some tools for using small objects better. It’s good to get help wherever you can right? Thanks again.
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