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

Showing posts with label SI Joint. Show all posts
Showing posts with label SI Joint. Show all posts

Tuesday, December 14, 2010

A Little Update and Some Surgery Talk

I know it's been a while since I've filled everyone in, it's been a busy past couple of weeks. I thought I should get a quick update in before I have surgery.

My left hip (operative side) is pretty much the same, still popping out (the reason I'm having surgery) and still causing me pain. I guess that's a good thing since I'm getting it operated on this Wednesday. My right hip (June operation) is so much better than it was a year ago, and I can't wait until I can say the same about the left side. However, my right hip has started some new issues. I'm having more joint related pain, most likely due to minor subluxations in that hip. But, it doesn't cause constant pain and it seems to be subsiding from what it was a few weeks ago so that's good news. I'm still much much better than I was a year ago, even two and three years ago so I'm not complaining.

Well now that we have the hips out of the way...
I've been having more lower back pain (SI joint area). It's most likely due to the increased subluxations of my right hip. I've had SI joint pain off and on way before I knew I was diagnosed with EDS. It was always just on my left side, now it's on the right side too. There isn't much I can do before I have surgery, so I've been using the heating pad as much as I can, which gives me some relief. I'm kind of getting used to the back pain, which makes it seem not as bad. I'm hoping that I'll get some relief once my left side is operated on because I'm sure the fixed hip v. the not fixed hip isn't helping the situation.

I go in for surgery tomorrow, which I'm completely ready for. I'm ready to get it over with and I'm ready to have a working hip. The hospital will call sometime this afternoon with the time that I need to be at the hospital, most likely bright and early. The surgery is the same on I had this past June, just on the other side (left) and it's a combined surgery as opposed to the separate scope and Z-Plasty (lengthening IT Band) surgery. Overall, it will make my recovery faster, but I'm expecting to feel not as well for a little longer than I was in the summer since it will be more extensive surgery all at once. My surgeon will go in with the scope first to check things out, fix any tears and tighten my hip capsuel and any other surrounding ligaments that need tightened. Then he'll open my hip up laterally and lengthen my IT Band with the Z-Plasty technique. (see past blog post on Z-Plasty)

I'll update as soon as I can after surgery, probably tomorrow night.

Friday, August 13, 2010

I've been in North Carolina this week, I go every year with my dad. He has a summer staff meeting here and I tag along and we have a pretty good time. I wasn't sure if I was going to be able to go this year, but here I am.

We're in the mountains, and although I'm not quite ready to go on a hike, walking around here even just on the streets is still a bit hilly and defiantly a workout. It feels good though. My right hip is doing really great, much better than last year when I was here. I can walk more and it just overall feels much better.

My right SI joint (lower back) has been bothering me more. It doesn't seem to be effected by the amount of activity I do, which is good and bad. Good because it means I can keep doing what I'm doing activity wise, but bad because it means I can't really control or expect what it is going to feel like. I often plan my life around how I can expect to feel after an activity. For example, if I'm doing something really rigorous then the day before and the day after I'll try to rest and give my body a beak since it's more work for my body than it would be for someone else's.

Hopefully if I can strengthen my gluteus and core I'll get some relief in my back, as well as improve my hip and make it more stable. So I'm going to, as always, continue to work on my exercises and really focus on PT and getting stronger.

Friday, August 6, 2010

Physical Therapy

I went to PT on Wednesday. It seems like I'm making progress hip wise, but my back has been killing me. I'm going back to land based therapy for now and we're going to see how that goes.

Right now I'm really working on my core and gluts. When I activate my gluts it makes my back a little better, so hopefully strengthening them with improve that. On Monday I have PT again and I'm going to use a bio feedback for my pelvis. It's like a belt and it beeps at you when you're pelvis isn't in a neutral position. I tend to always want to lock everything out when I'm doing exercises, especially my back. The idea is that using the bio feedback will prevent me from locking out my back and force my muscles to do their job. It's going to be a lot of work because I have to re-train my body, and my muscles the correct way to work since they've been compensating for my hip issues for so long.

My therapist is also going to video tape my gait and compare it to my pre-op videos. I think that will be pretty cool because my gait always looks better, so I'm excited to see it side by side.