Thursday, September 8, 2016

The situation I'm in

Writing this because it's been a while since my last update. A lot of people are probably assuming that I'm never going to play again; that isn't the case. However, I am in a very bad situation.

As I mentioned in my last update, I have a calcified FCU tendon. The FCU is one of 2 major flexor tendons in your wrist (the other is the FCR). These tendons allow you to flex, which means moving your wrist inwards (like with lifting). They don't have anything to do with grip strength or finger movement. Calcification is a rare condition that causes a tendon to thicken.

My case of calcification is so severe that it calls for removal of my tendon. This is rare to the point that there are hardly any documented cases in history of it happening. Every doctor I go to has never removed a FCU for this purpose. They've all performed tendon transfers (when a healthy FCU is removed and then used to restore another bodily function that has been lost), but they've never just removed a FCU and thrown it out. Furthermore these transfers are only ever needed in people a lot older than I am.

Nobody wants anything to do with my case. You can 100% live without your FCU (as long as you have a functioning FCR), but removing it has consequences. My former surgeon doesn't want to do it, because he doesn't feel that it's right for someone my age to lose a solid amount of their flexion strength. Other surgeons share the same belief, but additionally they tell me that whoever has already operated on my tendon must complete the job. Since my initial surgeon doesn't want to do it, that doesn't help. I've been told to seek a "second opinion" by so many people at this point.

There are only a handful of surgeons left within my insurance plan (which only covers doctors in NY state) that I haven't spoken with about this. I got the directory of doctors I'm eligible to see and called hundreds of them; they all either had never even performed a FCU transfer, or they had and they said no. I traveled to see some of them for evaluations, then after deliberation, they declined. I'm still waiting to get in touch with the few that are left, but I'm not hopeful at this point.

That's my situation as far as looking for treatment goes. Here's my situation as far as my wrist:

I'm completely disabled because of this tendon. It only gets worse over time. Very simple movements cause excruciating pain. It's at the point where I feel it burning 24/7, and I'm losing the ability to do everyday tasks rapidly. I was forced to do physical therapy (which is completely ridiculous; strengthening isn't going to help me) and I couldn't complete the reps of lifting light weights, just to give you an idea of how bad this is. This is no longer a Smash-only problem.

I know for a fact that this is a surgery I need to have done. You can live without your FCU tendon, but your flexion strength is compromised. I don't perform any heavy duties, plus, this is my non-dominant hand. As I've said to doctors myself: anything is better than the current situation I'm in. Yet they decline to take the case, saying things to me like "it needs time to heal" when this condition has only worsened over the past 2.5 years. They don't offer me any sort of alternative; they just say goodbye to me and tell me they can't help. My personal opinion is that everyone sees this case as a risk they don't want to take. I've lost a lot of faith in the medical system because of it.

The main thing I don't get is how they expect me to survive/make a living. If I wasn't living with my parents I would not be able to work/support myself right now. They're choosing flexion strength over actually being a functioning person.

I'm probably going to have zero options left in a few weeks (after I've spoken to the last few doctors within my insurance). It's terrible because to my understanding I would get my entire life back if someone removed it; not just Smash but a pain-free life in general. I don't know what to do at the moment.