Patient Stories

Another Part of My Story

For me, hip dysplasia has just been yet another part of my complicated health journey. I am a 16 year old female. I have broken 7+ bones and dislocated/subluxed joints at least 10 times. Thus far, I have been diagnosed with hEDS, osteogenesis imperfecta, and POTS, and I likely have MCAS.

This summer, I was simply standing up from my bed at camp where I was a counselor when my hip dislocated. It wasn’t completely out of the socket, but it was obviously dislocated. It was very late at night so I just laid in my bed until I (finally) managed to relocate it (stupid, I know). However, unsurprisingly, it popped out again just days later, and multiple times over the next few months. With no obvious cause, my hip would pop out of the socket, and my muscles would spasm uncontrollably. Sometimes, it went back in on its own, and other times I had to pop it back in. Obviously this was very painful and scary.

Eventually, I was diagnosed with hip impingement in two places, extreme hip hypermobility, acetabular dysplasia, a labral tear, and my femur was at a bad angle which was causing knee injury and subluxations. As I was going through the process of these diagnoses, my other hip began to have issues too. I subluxed it once, and it wasn’t as bad as my other hip, but it still sucked. Turns out, I have bilateral hip dysplasia, and likely a torn labrum on my other side as well. Before I even had my first hip surgery, I knew I would need 4.

In September, I had the labral tear and impingements fixed with a hip arthroscopy with an augmentation, which means I received muscle tissue from a donor that was used to reinforce my thin and torn labrum. We are hopeful that my labrum will hold up, but EDS makes us uncertain. I had hives around my incisions after surgery and some of my sutures “rejected” due to a foreign body reaction.

On October 3rd, after being rescheduled 4 times due to insurance, I had my PAO. Ideally, a femoral osteotomy may have also been performed, but my surgeon didn’t feel comfortable doing a surgery with an already high rate of malunion on somebody with osteogenesis imperfecta. I had to stay in the hospital 4 times longer than expected due to my POTS – my blood pressure dropped to near-coma levels after surgery. I’ve been more dizzy, and obviously fainting on a broken pelvis is no bueno.

I am optimistic because my x-rays from last week showed bone calluses, which means my bones will hopefully heal back together without issue.

I’m scared for the future, for my other hip, and I’m worried about how successful my surgeries will be.

But honestly, I’m just amazed I made it that far in life without needing orthopedic surgery. Being disabled is something I’m learning to live with. Most people don’t expect a ex-athlete 16 year old to be disabled. It’s hard to see all the other kids my age be able to be active, but I hope some day soon I can get back to that, even if it’s just until my next surgery.