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, May 9, 2010

Welcome

Hello everyone and welcome to my blog. I'm am scheduled to have surgery this June and I want this to be a place where I can share my experiences, as well as an easy place for my friends, family, and fellow hip chicks to see how I am doing.

Here's a little bit of background info about me.
  1. Winter 2005 - Appendectomy
  2. Summer 2005- Bilateral Foot Surgery
  3. Winter 2007/2008- Left Knee Reconstruction (this included tightening of my patella tendon, as well as surrounding tissues and ligaments)
  4. Fall 2008- Right Knee Reconstruction (identical to left knee reconstruction)
  5. Winter 2009/2010- Left Knee Reconstruction (this included patella osteotomy, moving patella tendon to adjust the q-angle, and replacement of MPFL with a cadaver ligament, as well as tightening of surroundings)

Needless to say I'm unfortunately experienced when it comes to surgery. I also have a connective tissue disorder, Ehlers-Danlos Syndrome (EDS) which makes my joints, ligaments, and tendons extra laxed which is the bases of my orthopedic issues.

After almost three years of putting up with major hip instability, as well as significant pain I have finally decided to have hip surgery. As all of the conventional treatments (PT, acupuncture, and pain medicine) have failed me, surgery is pretty much my only other option at this point. This June I am scheduled to have two separate hips surgeries. In the first surgery my surgeon will fix a labrum tear and look at my hip joint to see what he will be dealing with. Two weeks later, he will perform a pelvic osteotomy as well as z-plastia (lengthening of the IT-Band), which will hopefully correct all of my hip issues. This surgery will require me to be non weight bearing for 6 weeks post op. Because of the instability in my other hip I will have to be in a wheelchair for this time.

I'm exicted to get the surgery over with and hopefully fix my hip issues. I can't imagine what my life will be like without having to deal with my hips, I'm so ready to find out!

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