The Mighty Logo

When EDS Makes You 'Orthopedically Date' Your Surgeon

The most helpful emails in health
Browse our free newsletters

Three weeks from now, I will once again short-step into an icy cold operating theater and lay down on a gurney. Andy – my tall, lanky, athletic surgeon – will be waiting.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

We’ve got to stop meeting like this.

Andy and I have been here before. We “know the drill,” and he will make sure to rev that particular power tool sarcastically while I’m being strapped down and cocooned in warm blankets. As the room fills with nurses and residents and an early grunge rock blares from the sound system, I will tell my favorite joke: a concise, blue tale involving a country music legend, a sex act, and a case of mistaken identity. I’ll hit the punchline just as the anesthesiologist pushes the Propofol into my IV, ensuring that the last thing I hear is laughter and that, should I not awaken, my last words will be memorable. I will slide toward darkness as crisp oxygen fills the mask snuggling my face. Andy will then deploy his scalpel, scopes, and a myriad of power tools to my body – once again, reconstructing my knee.

A common joke among people with Ehlers-Danlos syndrome is that we keep our doctors on speed-dial. In my case, this is absolutely true. Andy gave me his personal email address after our third orthopedic surgery together and told me to ping him if something else happened. Last week, when I informed Andy that I’d torn my ACL for the fourth time, he replied, “Well, at least now you’re out of knees.”

I like to think Andy and I are “orthopedically dating.” Not only have I known him longer than my ex, Andy has had his hands all over (and in) my legs a hell of a lot
more than he did. I also believe he is turning me into a cyborg.

Ehlers-Danlos syndrome is genetic condition that affects collagen production in the body at a molecular level – collagen being the “glue” that holds our bodies together. Simply put, people with EDS make bad glue. There are 13 types of EDS. I have Vascular Ehlers-Danlos (VEDS), one of the most rare and dangerous types. In addition to weak ligaments and tendons, I get the spectacularly unlucky combination of both vascular laxity (“soft veins,” prone to aneurisms) and hollow organ fragility (“internal organs may explode without warning”). Having EDS is like constructing a house out of faulty and unsafe materials, rusty plumbing, lead paint, then filling it with old wicker furniture and renting it out to 20 rowdy college students.

In my case, the frat party has resulted in a dislocated kneecap, four torn ACLs, two torn menisci, and a fully ruptured Lisfranc ligament – over the course of 27 years. No athletic activities, no CrossFit mishaps or Special Forces training. I just… fall apart.

A drill designed by flowers.

Median life expectancy for people with VEDS is 50. This year I’ll be 47. I have friends with this condition who have survived multiple cardiac and bowel surgeries, and even neurosurgery. My burden is waking up each day with the knowledge that my body may betray me without warning. So my ACL’s recent rupture – as opposed to my aorta – rings both familiar and reassuring. “At least it isn’t…”

My attitude toward the six months of arduous recovery currently ahead of me? Blasé. ACL surgery? Had three already. Bring it on. Derrick Rose is a wuss.

Crutches and that dastardly leg brace? Make them fashionable. Strangers with mild pity asking, “Oh, what happened?”

An unsuccessful attempt at climbing Everest.

Wrecked a Bugatti drag racing Fernando Alonso.

I was injured rescuing kittens from terrorists.  

As for Andy and I, our routine has become… routine.

I blow out a ligament. He fixes it.

I blow out a ligament. He fixes it.

I blow out a ligament. He fixes it.

I blow out a ligament.

I will awaken in the recovery room, my repaired knee mummified with bandages and secured in a full-leg brace. I’ll ask the nurse for enough drugs to “make me feel like Lou Reed in 1973.” Andy, my hero, is already by my bedside. He nods his head and smiles knowingly. Andy takes my hand and gently rubs my palm. Then he scolds my knee.

Don’t make me do this again.

But he will probably have to. That’s OK. We’re in a long-term relationship.

Orthopedically speaking, of course.

Thinkstock Image By: gpointstudio

Originally published: July 5, 2017
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home