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

Monday, May 24, 2010

Pre-op Appt

I just had my pre-op appt today and everything seems like it's all lined up.

We're working out an insurance issue. My insurance company denied coverage for the surgeries, but my surgeon isn't concerned. They are going to resubmit the claim and he's pretty sure they will end up covering it when they make a coding change on my paper work.

I'm getting ready to donate 2 pints of my own blood, which I'll use if I need to have a transfusion post-op. I have to do one this week and one next week, so I'm hoping they don't have any trouble getting me in quickly. I have to make sure I have time to resupply so that I'm not weak for my first surgery.

I feel ready now for surgery. It seems like this is the right thing to do now and I'm exicted to finally fix my hip problems. I have total confidence in Dr. Ellis and I'm sure he's going to take good care of my hips.

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!