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, November 18, 2013

Time to Get Creative Again: PAO and EDS

This morning I saw my hip specialist. I had an idea of what he was going to say, and it has always been something that has been in the back of our heads as a possibility and something I would likely need down the road. It turns out that road was a little bit shorter than we once thought. 

My hip dysplasia (meaning I have a shallow hip socket, so the head of my femur does not have enough support) has become more unstable, requiring a PAO (Peri-Acetabular osteotomy). This procedure is centered around bone work to essentially rebuild my hip socket, providing more support to the ball (head of my femur) of my hip. By doing this I will be more stable, my pain will be reduced, and the amount of stress on a labrum will be reduced. I have always had borderline measurements for this procedure, but my hip has moved over the past couple years (like we thought it would) and my symptoms are more dominant. 


There is still a lot to think about and go over; that is something that EDS has taught me. Luckily, my hip surgeon is one of my very favorite people on my team, he gets EDS and takes all of my past experiences with surgeries into consideration. He realizes that I am not the textbook patient and that we always have to be a little creative with recovery and getting me to where I need to be. 


It's time to get creative and work out the logistics about how to make this surgery and four month recovery EDS friendly. 

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