My Journey with Ehlers-Danlos Syndrome

"On the girl's brown legs there were many small white scars. I was thinking, do those scars cover the whole of you, like the stars and the moons on your dress? I thought that would be pretty too, and I ask you right here please to agree with me that a scar is never ugly. That is what the scar makers want us to think. But you and I, we must make an agreement to defy them. We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means, I survived."

- Little Bee by Chris Cleave

Sunday, October 24, 2010

No More Neuro

First off, I'm sorry about the video. I've completely forgot about adding the most recent one, the best one. I don't have the one from my PT but some day soon I'm going to take a new one so I can share that.

I talked about neuro PT in the last update. As of Thursday I'm going to stop going (which I'm kind of happy about). I was working with one guy who knows my original PT guy, he was trying to figure out if there was anything from a neuro standpoint. He didn't find anything and he didn't have any really new ideas that I hadn't already tried. Being in PT for really the past 4 years, I've tried almost every exercise any PT can think of, so it was a challenge for him.

However, he did want me to see someone in his office who specialized in women pelvis misalignment. I have off and on SI joint pain and she thought I might have a misalignment that is causing it. She discovered that my pelvis was indeed misaligned, so she did some muscle energy techniques to try to re-align it. The first time she got it to move so that it was in more alignment. Then she gave me some simple exercises to try. Then next time I came in, it was back in the same place and she couldn't get it to move at all. She tested other thing, like my sacrum, to see if that could be the issue but everything else was moving like it was supposed to.

We decided that it didn't make much sense for me to keep coming in since we weren't getting anywhere. It's hard to make much progress because my body is uneven right now, with one hip fixed and the other hip not. So, I'm going to be in touch with my regular PT and might start therapy back up with him, but it might make the most sense to just wait until after my surgery in December.

I'm also in the process of scheduling a gait analysis. It looks like it's going to be November 8th, for pretty much the entire day. I'll give an update about the analysis when I know more.

Saturday, October 9, 2010

Neuro Physical Therapy

I've been working with a new physical therapist. He is a neuro specialist, which means he works with lots of patients who have neurological issues, like trauma patients. I don't have any known neuro issues, but the way I respond to different exercises sometimes makes it seem like there is some underlying neuro issue.

My main physical therapist has been sharing my case with this neuro PT for quite some time now to see if he had anything to add. Since I was starting to plateau in regular PT he thought it would be a good idea to have a neuro PT consult, just to see if there was anything else to add.

I've been to see my neuro PT about 4 or 5 times now. He's still trying to get a feel for me, and how my body works which always seems to take a while for others to fully understand. We're trying to find exercises that I haven't tried in the past and that I'm able to do. It's a little difficult because my right hip (operative side) wants and can do a lot more, but my left hip doesn't allow me to do those things.

I've been using this oscillation board which is proven to help with balance and back pain. Basically I stand on this machine and when it gets turned on it shakes, or oscillates back and forth. The goal is to hold a position, I do this with and without my eyes closed for more of a challenge. Here's a link to the kind of machine I'm using, it's not the exact one but you can get the idea.

http://www.vibra-trim.net/VT100.html

I haven't noticed any improvements yet, but I'm not expecting this to fix my left hip. I just would like to get as strong as possible before my next surgery (December 15th) so that my recovery is easier. This is always my goal because EDS makes recovering a little more difficult.

I know I keep saying this, but I'm really excited to get my left hip done. I know it's weird to say that you're excited for a surgery, but I really am. I still can't believe how much better my right hip is and I can't wait to say the same for my left hip. I can't wait to not have constant hip pain, it's an exciting thought.