Q: Was the surgery worth it? Are your legs better now? Do you still have pain?

A: That’s also a big question with a difficult answer, so this is where we’re going to talk about the connective tissue disorder of it all. The TL;DR of this is please, please, please get evaluated for connective tissue problems before getting a surgery like this. If I had, I would’ve saved myself years of trauma.

I did everything I was supposed to post-op. I kept up with regular physical therapy, I got new prosthetic grade orthotics to support my ankles, I practiced walking without a cane, I trained and did my best to stay active despite continuing to live in daily bone pain. My surgeon kept giving me short term temporary handicapped parking placards because he was sure I’d be walking fine in no time. All of my doctors didn’t understand why I wasn’t having a better outcome. The procedure itself had gone so well and my recovery was faster than anticipated, so why wasn’t I bouncing back? I internalized a lot of guilt about not doing enough or trying harder to recover. I was promised less pain and walking better than I ever had before. But that never happened. 

Instead, I wasn’t developing muscle the way I should, my chronic pain was worsening, and no matter how much physical therapy I attended, I couldn’t move off of my recovery plateau. We knew something was going terribly wrong when my physical therapist noticed that after all of this, my knees were beginning to rotate back inwards. After a lot of research and being tossed around between bewildered doctors, I was ultimately diagnosed with a connective tissue disorder in 2019.

I am still currently in the process of identifying which one due to delays caused by the pandemic. The technical diagnosis I have is Joint Hypermobility Syndrome, which is frequently used (and listed in my paperwork) interchangeably with the hypermobile-type Ehlers Danlos (hEDS). My doctors suspect that this genetic disorder is likely the reason my bones developed the way they did in the first place, resulting in Miserable Malalignment Syndrome.

Bringing it back to MMS and the surgery, I was never going to experience the results expected from the osteotomies. My connective tissue is too lax and even though the bone work was performed properly, they were always going to keep rotating. I wish we had known that five years ago, but alas, no one caught it. It sucks, but I’ve adapted. I am now officially considered permanently disabled, which at least means I get to have handicapped license plates that I no longer have to renew every year.

To reiterate: please get assessed for abnormal hypermobility prior to surgery. (especially if you’re “double jointed” and have fun body tricks you like to show people at parties, or if there are mystery joint issues that run in your family). Not all hypermobility is disordered, but if it is, you want to know about it early so you don’t end up like I did. Continuous physical therapy is key to management.