Thursday, June 5, 2008


Well, I finally did it. I got myself a new AFO. This would be the third one I've had since being diagnosed with CMT. The first one I had was made of plastic, and I think I had it made when I was about 14 or so, though I didn't start wearing it full time until around age 16. The next one I had made was plastic, also, and, to bluntly put sucked. We'd had it made not too long after my hip surgery, and I think it was just the wrong time to get a new one. I wasn't even walking without crutches yet. I ended up going back to the first one and just getting it adjusted. This new one is quite a bit different. Instead of the hard, bulky plastic...this one is made of carbon fiber. It's much stronger, and much more lightweight than the previous ones. My husband calls me his bionic wife. LOL.

It's been a little over two years since I've worn an AFO, and subsequently, two shoes. I've had two surgeries in the past two years, so I've either been in a plaster cast or a CAM walker brace on my left foot for two years. I have been excited at the prospect of finally wearing a pair of shoes again. Unfortunately, I had let myself forget all of the pain, annoyance, and frustration that a new brace brings.
First of all, before anything else, was getting the brace approved through the insurance company. I guess since the previous two had been through my parent's insurance I hadn't realized what I headache that part of it could be. It wasn't enough that I had a prescription for the afo from my doctor, but I then had to get a "letter of medical necessity" from him. Our insurance was running out the end of May, so I was in a hurry to get it taken care of. Unfortunately, it seemed that the staff at the doctor's office was highly incompetent. It took 3 weeks for me to get that letter. 3 weeks! I called almost every other day, and nobody could ever give me a straight answer as to where the letter was. Lucky for me, though, the billing secretary at the orthotics office was as persistent as I was. We finally got everything approved, and a rush was put on the brace. I picked it up the day before my insurance ran out.

The next joy of a new brace is breaking it in. Now, I have to say, this brace is extremely well made, and I am rather impressed. It has a spring-loaded ankle joint, to help with my foot drop and still allow my ankle to retain the range of motion that I have. Very cool, though it's taking me a while to get used to. The back of the heel (which you may be able to see from the pictures) is not completely covered, so it sometimes feels like my foot is slipping out the back. It's especially noticeable to me when I have a shoe on. The hardest thing to get used to, though, is the 1/2 inch heel lift. It's put on there to help balance out my hip and pelvis. It's apparently the same height that they put on my previous afo's, though I don't remember it feeling so significant. I have always purposely bought flat shoes, with no heel at all, so as to maintain my balance. Now, I feel like I'm walking with heels on. On one foot. It's driving me insane. They said if it really bugs me, they can take it down a bit. I'm back and forth on that decision. Other than those three things, it's really not so bad. Quite long as I'm sitting down. LOL.

The absolute worst thing about this...buying shoes. My right foot is not as affected by my CMT, and I don't wear an AFO or anything on that foot. So for the past two years as I've purchased shoes, I've only had to worry about fitting a shoe to my right foot. Granted, I still can't wear all of the absolutely gorgeous shoes that I would like to, but it did give me a lot more freedom. My husband and I went out last weekend to try and find me some new shoes, since none of the pairs I currently own will work with my AFO. We shopped for hours, at 3 different stores before we found any. They are running shoes, size 9 wide, with the insole taken out. And they still hurt my feet. I usually wear a size 7 1/2. I had forgotten how insanely frustrating shoe shopping can be with a brace. I felt really bad for my husband, who had to put up with me being so frustrated. (Though, I think he understands a little more now.) I was mostly frustrated with the fact that this new AFO is slimmer and lighter than my previous one...yet it wouldn't fit in shoes that I could have purchased and worn comfortably before. I think I figured out the main issue. My previous brace ended right before the ball of my foot, which would allow me to squeeze into a lot more shoes. This one comes all the way out to the end of my toes, giving me no flexibility in that area. I'm pretty sure that's the biggest problem, and I'm planning on seeing if we can cut this one off like the last one. The 1/2 inch heel lift isn't helping much either.

Anyway, I'm trying not to be too frustrated by it. I know that it will help, and I know that I need it. I also know that I should probably be wearing it more than I have been. I have a follow-up appointment next week, in which all of these issues will be addressed, so I'll post again about any changes that we make.