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

Thursday, December 20, 2012

Very Over Due Updates

Apparently, I've been a little behind in my updates.

Shoulder Update: I had originally thought that I would have shoulder this December, but I decided that I wasn't ready to do that. I know that it is something I will probably have to have done in the future, but the timing and the uncertainty of the outcome made me decided that putting it off for a little while wouldn't be such a bad idea. I'm not actively doing anything for my shoulders right now, although I have adapted how I do things on a daily basis in hopes of keeping them as stable as possible for the time being- for now that is good enough for me.

Hip Update: Two months ago I stated having some mild hip discomfort. After experiencing it for a couple weeks and knowing that something was just not right, I decided that the time, effort, and resources put into my hips to get them back to a functioning point was not worth the chance of ruining; so I made an appointment with my hip specialist. When I saw him, about a month and a half ago, he was very optimistic that this was just my hip flexor inflamed and that jumping back in PT would do the trick. We briefly talked about possibly doing injections if I came back in a month and things were not where we wanted them to be. We also briefly discussed the possibility of doing a scope down the road to fix a possible labrum tear. I took that next month and work hard at PT and was really careful regarding my movements to make sure I wasn't putting added stress on my hip.

As my hip flexor got more inflamed and continued to slip over my joint, it began rubbing on my labrum- most likely creating a tear. My SI joint (that little dip in your lower back-one on each side) began getting more fired up as my hip flexor kept getting inflamed. And as my SI kept getting fired up, because my hip flexor was inflamed and popping, the muscles on the right side of my back got really tense and filled with knots. As you can see, it was a chain reaction. We started backing off in PT and began working on relaxing my back muscles and working out the trigger points (basically, the knots). Doing that gave me relief in my back and we attempted to try to settle down my SI so that I could focus on my hip flexor and gain stability again. We couldn't find anything that would relax my SI, while gaining strength. I got an SI belt (basically a brace looking belt that sits around the lower back to put pressure on the joint to get relieve) that I wear when I'm going to be on my feet for extended times. The belt helps, but as soon as I take it off it's back to the way it was before.

I saw my hip specialist on Monday and I was expecting him to want to give me injections, which would allow me to relax my hip and gain strength in the mean time and overcome the hip flexor issues. Well, that's not exactly what he said; he thinks that I need to have a PAO (rebuild my hip joint to make it more stable) on my right hip (the problematic one). We've known that my hips are mildly dysplastic (not developed properly- in my case the socket is too shallow), but my right hip has gotten worse since the last time he did measurements on my x-rays (probably 4 years ago- before I had the Z-Plasty to correct my snapping hips). He thinks that in correcting the underlying joint issue, my hip flexor problem will be resolved. He is unsure what it will do to my SI issues since it is hard to tell if my SI is directly related to my hip discomfort, or something independent. He gave me a script for massage therapy and acupuncture just so I can try some different things and see if I can get relief, either until I'm ready to have surgery, or to get me back to a more functioning point to avoid surgery altogether.

If I do decided to have a PAO, it won't be for a couple of years and I will have a second opinion with a hip specialist in New York. But before I can do that, I need to take the time to research and to develop a solid plan for how this is going to be effected by EDS, and how it is going to effect the rest of my body.

Other than those little bumps in the road, I am doing remarkably well. I am using my winter break this year to rest, relax, research and enjoy the time with my family.

Happy Holidays!

1 comment:

  1. Hey we spoke earlier today (text) about the PAO but I just thought I'd add 2 things from my personal experience with PAOs...

    1) My SI joints were not positively affected by the PAO--basically neither the pain nor instability got any better...a lot of patients go into the PAO hoping that it also relieves the SI joint pain and issues. That wasn't the case for me personally.

    2) In terms of EDS and PAOs--typically any surgery that cuts the bone (PAO, TTT, etc) works better and is more "reliable" and "straight forward." That's not to say that recovery goes off without a hitch but because the soft tissue isn't the main focus, the body does respond to the healing positively (at least it did for me). The biggest challenge will be the incision (which I know you struggle with) because it is an open procedure (and by open I mean usually 5-7 inches). Again, that's not to say complications don't happen (I had a few) and it is a VERY big surgery

    Obviously you aren't looking to have this done anytime soon...but figured before this post gets pushed down with other posts I'd add those 2 points in there...of course text me with any other questions and I will be glad to give you details of both recoveries (which were oddly very different)

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