If you’re familiar with those on the EDS spectrum, you know they try not to do surgeries with us. It can be especially frustrating when you tear a ligament or tendon, but there are a variety of reasons for trying to avoid it. Many of us don’t respond normally to nerve blockers or sedatives, so we may have a tendency to still feel pain or wake up. Because EDS is a collagen disorder and general anesthesia requires intubation, it has a high risk of stretching and damaging the ligaments in the bronchial tube. We often have bad reactions to stitches and a higher risk for infection, making the healing slow and complicated. There’s also that our skin doesn’t like to heal well so we end up with thin scars called paper scars. Then, if it’s ligament related, our body doesn’t take to using them whether they’re one of our own re-purposed or a cadaver ligament. If it’s one of our own, we have faulty collagen to start so it doesn’t last long and if it’s a cadaver, our bodies will replace the collagen it has with that our system produces…making it the same as the one that needed repaired within just a few years.
Going To A Surgeon That Knows EDS
I’ve always had weak ankles. They’d roll and give out walking on a flat sidewalk leading to constant sprains. My physical therapist said I had absolutely no planar stability as she held my ankles and easily shifted them away from the joint. My feet were flat and my body had built up thick calluses in the arch to compensate. Occasionally, I would sprain it severely enough I’d have to walk with a cane or take a break from walking for a day or too, but nothing too bad…until…October 2016. I had minor tears in my medial ligament.
After 9 months in a walking boot, I still hadn’t managed to have it heal completely and my rheumatologist was concerned about muscle atrophy so he sent me to a podiatrist that specialized in EDS. I researched everything I could before hand. I stalked the website of his office. I found a video on YouTube (that I’ll include below) that had him speaking at an EDS conference. I wanted to know everything I could before the appointment so I was prepared for bad news as well as able to discuss the procedures and why I didn’t want them. At the time, I wanted nothing to do with it and was convinced he’d say I wasn’t that bad and just needed some specialized therapy.
It only took a few minutes into the first appointment for him to say I needed surgery. “Have you looked up anything with your condition? Have you seen any of the lectures I’ve done?” I said that I did actually watch the lecture on the EDS Awareness page. “Good, so you know what procedures I do! We’re going to do a ligament replacement and an arthroereisis!” He explained that they’d only do local anesthesia and that his people were used to EDS so I would be in good hands and that the procedure had an amazing success rate. It was, of course, up to me, but at this rate I’m walking myself into a wheelchair if I continue. Despite my intense fear, the fear of not walking again was far greater so I agreed to the operations. Now, I’ve shortened my visit into a few sentences but he did take the time to explain everything to me and he wasn’t bullying as I suppose it could appear from how I’ve written it down. He really was kind and understanding and took the time to answer all the questions I had, I promise.
So far? Best decision I’ve ever made and I’ve since had the left one undergo the same procedures.
So What Exactly Was Done and How’s It Different?
The first procedure, the ligament replacement was done with a synthetic ligament and bone anchors from a company like Arthrex. This was important because this meant my body can’t replace the polyester with faulty collagen and had a very low rejection rate because of being artifical. It would go across the anterior talofibular and calcaneofibular ligaments to compensate for the fact they’re both more like rubber bands and can’t do their job to hold my ankle bones in place.
The second procudure, the subtalar arthroereisis, was a bullet shaped chunk of titanium that would be put the space between the talus and calcaneus bones called the sinus tarsi. This would further add stability to the ankle by preventing the bones sliding around and compressing the sinus tarsi.
Though the end result is a foot that isn’t as flat, it was the internal aspects of the ligaments not being allowed to stretch and end up constantly subluxed or dislocated that was the important outcome. And the x-rays of my foot show a noticeable difference. You can see where the one without the hardware is stretched farther than the one without. The first image can be noticed most where the ankle connects to the leg and the angles of where the joints are. The second one shows how far my foot was able to easily turn; it was so far you can see the bones of the outside of my foot in the hardware-less image.
Learning to Walk as the Bionic Woman
The healing, I’ve touched on in a few other early articles. It was slow, but not terrible. I’ve only had two teeny little incisions on either foot because it was done laparoscopic…so no horrible scars. Because I’m a zebra, I had a few complications with the first surgery. Despite that…I’m now walking short distances. So first surgery in September, second in December, walking in January.
The muscles in my legs feel a bit funny sometimes and I have trouble doing things like painting my toenails because I can’t just partially dislocate my ankle like it’s nothing anymore. I can’t put the soles of my feet together while my legs and hanging straight down anymore. I can’t stand on the side of my feet. All of which are fantastic, but it takes some getting used to having a normal range of movement.
I still have to take things like hiking and dancing slow because the newer surgery is still a bit on the sore side with a lot of work walking let alone using it on uneven surfaces or jumping. But I’ve yet to roll my ankle. The ligament pain that I was previously unable to escape from has been gone and not showing signs of returning. I can point my toes on the initial surgery foot. And all without the fear of my body slowly reversing the surgery because of the faulty hEDS programming it has.
It’s been a life saver for me and I feel blessed to have a surgeon close by that does this surgery as well as familiar with EDS to handle the more odd complications that we face.
