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.

Dr. Patrick Agnew and Ankle Surgery with EDS Patients

Recovering from surgery is taxing in the best of situations. Your body is diverting a lot of resources to the area that was worked on and, as in my case, is trying to decide whether to fight or accept the new pieces that were put in. But it works a bit different when you’ve got anxiety and EDS.

With all types of EDS, we’ve got to worry a lot more about our healing for a variety of reasons.

Stitch Rejection

Nobody reacts happily to stitches. However, we’re more likely to react to normal stitches as well as dissoluble ones. This goes for internal stitches as well as external. Part of it is because our skin has a tendency to be super stretchy, the other part is many of us have a cormorbid condition called MCAS that makes us more likely to have a new allergic reaction without warning.

Paper Scars

EDS is a collagen disorder, which means we don’t really heal well from deep incisions. So when your surgeon cuts the multiple layers of skin to do necessary work, a normal person’s body goes to work repairing the skin, sometimes a bit thicker than normal and leaving a thick layer of scar tissue. Ours? Imagine if you hired contractors to build a complex bridge but gave them the blueprints for a tree house. So when our bodies go to repair the skin, they’re doing it the best they can, but it ends up thin and fragile rather than stronger and thick. The scars often look and feel similar to wrinkled tissue paper…hence the term “paper scar”.

Healing Time

Just like with the paper scars, our bodies don’t always know how to heal properly. Using myself as an example, I’ve got a little bullet shaped screw inside my ankle called a subtalar artheoreisis. Once implanted, they’re not supposed to move once the initial healing stage of not walking around is over. I’ve got an amazing surgeon, followed orders, started walking a little bit with the assistance of a walker. Still erupted in pain one morning. After a few x-rays and several discussions where I was asked to feel areas and move in specific ways he made the conclusion that it moved. I asked him how and why and how do I prevent it next time??? “Honestly? It’s not supposed to move in the first place. So there’s not much you could have done to prevent it and not much to keep it from happening again expect take it slow for a few days. You EDS people are just weird sometimes. Your films look good and lets just hope it doesn’t happen again. This is just a minor setback.” It’s not incompetence on his part or pushing the limits or disobeying orders on my part. My ankle just tried to stage a coup and I thwarted it…for now…

Pain Management

Healing hurts…but so does every day life. Is this pain because of healing or is it because the temperature dropped an my Raynauds is sensitive? Who knows! Hope you’re comfortable with gambling because even an experienced surgeon can only give you their best guess.

Mobility Aids Can Hurt

Crutches, knee scooter, walkers, rollators…they can all be FANTASTIC! Unless you’ve got EDS and the pressure of crutches will sublux or dislocate your shoulders, wrists, and/or elbows. My knee scooter moves my patella and has subluxed my hip on several occasions. The walker aggravates my shoulders. So not only do you have to monitor what your healing is doing, but you’ve got to juggle all your other joints with the expertise of Cirque du Soleil performers.

Comorbid Complications

There’s a TON of comorbid conditions that can come with EDS. Something like Raynauds, where your internal temperature regulation is broken, can make icing a post surgical ankle exceptionally painful. IBS and chronic constipation can get worse with post surgical opiates and anesthesia recovery. Intestinal issues can also make getting the right nourishment for a healthy healing problematic. Allergies to adhesive can make bandaging uncomfortable at best.

Surgery is never easy

Even absolutely necessary surgery is a trauma on the body. Having EDS just means that we have to be extra careful and hyper aware of what our bodies are doing to make sure we heal in the best way possible. It makes daily activities more exhausting than normal, which makes us a bit more grumpy and edgy. So, we just ask that you take that into consideration when we talk about it often or request a bit more comfort than normal.