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.
