When I get asked if my surgery was successful I find myself trying to decide how to answer. Success means something different to just about everyone I've met in the MALS Community.
When I was first diagnosed at 16 my version of success was very different compared to how it is now at 29. I wanted to be able to go to college, become a doctor, and live a normal life. That was my version of success. When that didn't happen it was soul-crushing.
After my surgery didn't make me feel better at 16 I decided I was done with doctors. I had been told "This is the surgery that will fix you." so many times by that point I just didn't believe there was a "fixing" me anymore. So I resigned myself to a life of dealing with flares and being mainly bedridden.
It wasn't until I was 19 that I finally decided to go back to a vascular doctor. Not only did I find out my MALS was back but it turned out I had Superior Mesenteric Artery Syndrome (SMAS), Nutcracker Syndrome (NCS), Pelvic Congestion Syndrome (PCS), and May Thurner Syndrome (MTS). I came into my first appointment to find a doctor and a room full of students staring at me like I was a walking miracle. Turns out I very much was. I was told my body was a ticking time bomb and I needed to decide if I wanted to go ahead with surgery or not very quickly.
After that, it is kind of a blur. I remember writing my will as I was having an experimental surgery, the first like it in the States. I was going to be the first surgery on record to fix MALS, SMAS, NCS, and PCS at the same time. It was being recorded and sent out to other schools. I kept thinking about the fact that if I didn't make it that at least the next person would have a template of what to do.
That's when the meaning of success changed for me. Instead of wanting to grow up and become a doctor I wanted to help other patients like me. They would be my success story. The ones who didn't have to wait till their bodies were at their breaking point to get help. There would be an example of this "miracle" in the medical world. Even if I wasn't in it anymore.
Luckily I made it through that surgery but symptom relief was minimal. I was semi-functional in medical terms. I struggled to admit that this was what my life would look like. Till I realized all the things I would have missed if I hadn't gotten treatment. My success turned into all the big and little moments of joy I had around me. Was I ever going to be normal? No, but I was happy with what my life was and that was enough.
During Covid, I found out that my compressions were all back and with a vengeance. Once again I was told "It's time to go now" for surgery. There wasn't time to "shop around" for doctors. So off I went for surgery again and once again I'd be a first for the States. I had MALS, SMAS, and NCS treated again.. But this time my inferior vena cava wanted in on the action. The doctors had to rebuild it by hand as it had become so weak while trying to maintain my body with my other compressions bogging it down.
Not that long ago I had a call from them to ask how I was doing.. When I told them I was still experiencing symptoms they were all disappointed. I wasn't. I knew that was likely what was going to happen but that wasn't what I was looking for.
My success is seeing the new multiple compression cases getting treated like horses instead of unicorns. My success is seeing my nieces and nephews grow up. My success is cuddling in bed with my cat during my flares. My success is making graphics for multiple compression patients with my spouse. My success is the legacy of this foundation.
If that's not success what is? So when you ask someone if their surgery was successful you may be surprised by their answer. Every one of us has a different version of success and what we want to happen. That may not be what we get but that doesn't always mean we aren't a success story.
So what is your version of success? Did you reach it or did it change as your recovery went on?
We'd love to hear about your story. If you'd like to submit your version of success please click the link below.