wilderness

“Carpal tunnel” What?

“There is nothing wrong with your ulnar nerve.” The neurologist spoke in the soft, mixed British-Asian accent of highly educated students from that part of the world. “It is all median nerve. Carpal tunnel.”

Never mind that distal fourth and fifth digit numbness in both hands cannot possibly be explained by carpal tunnel. If the doctor says carpal tunnel, you get treated for carpal tunnel.

So I went to a new pain doctor, and he gave me an injection in my right wrist for carpal tunnel, which was decidedly less fun than many of my other injections, particularly the part where he digs around with the needle to inject the numbing medication, while telling me to “let him know” when he hit the median nerve. Which he did. Often.

And sure enough, the excruciating burning and pins and needles in that hand disappeared. And sure enough, I still have zero sensation in the tips of my ring and pinky fingers, and slightly above zero in the tips of my other fingers. But I have to admit, this is not going to keep from working the way the loss of tactile sensation and excruciating pain in my hands did. So I suppose I should just shut up and be grateful and get used to it.

And I am. Getting used to it. I am somehow still managing to learn new modes of fine motor coordination without the level of direct feedback I once had. My hands are improving, in surgeries. I am able to adjust retractors to hold them steady in real time by compensating for the slight, uncontrollable movements of my hands. And certainly, that is all the surgeons care about. They just don’t want things to move, and whether I have been holding them for twenty seconds or twenty minutes is of no import to them whatsoever.

I also received a cortisone injection under each shoulder. Unfortunately, the one on the right didn’t work. I have not tried to swim since the last flare-up. But according to the new pain doctor, and tentatively confirmed by my shoulder surgeon (who apparently has a thing for me, but that is a thing for another post), the bursitis that was removed back in January of 2015 is likely reforming in that same area, and the cortisone can’t do anything about that. This new pain doctor, bless his heart, apparently unaware of my previous trip down this road, suggested nerve blocks and nerve ablations.

Anyone who has read Book One is probably a little confused. After all, wasn’t the ultimate goal of that January surgery to remove the part of my shoulder blade that caused the first bursitis so it wouldn’t come back? So why is it back?

To be fair, it isn’t bad, yet. But unless I never want to swim again – and despite four months of physical therapy to engage the “correct” muscles when using my shoulders while swimming – it will continue to worsen. A mere two years and change from the original surgery.

So back into the wilderness I go, that same vast jungle of medical unknown from which I thought I emerged last year. Distal digital numbness? No known cause. Re-emergence of the bursitis? Ditto.

If nothing else, we have been able to clarify swimming as a direct causal factor to the pain and tissue derangement under my right scapula, having first sent me back to the surgeon after swimming in the ocean in August, and then each time following a swim workout since. Troublingly, each time, the pain has rescinded just a little bit less.

But why? I want to know why. What the hell is it that I do when I swim that aggravates that area? I don’t just want to throw treatment after treatment at it, or more random physical therapy (which may have very well exacerbated my carpal tunnel, yay) in which people with enough medical training to help with 99% of pain and weakness associated with anything from athletic to surgical injury are at a complete and total loss to explain why, despite the strengthening of the muscles they have pinpointed, I don’t get any better.

I’ve made significant postural and muscular changes to my upper body. My shoulders are aligned with my spine. The larger and smaller muscles underneath them have taken back the jobs they held before being rudely superseded by my traps. But it doesn’t seem to matter. I get into a pool and start swimming, just a crawl, the same stroke I’ve been performing, more or less the same way, since I was a child, and something goes awry.

And no-one knows what or how. A phalanx of medical professionals has come up totally empty. And even now, as I lean my head back to stretch my neck, I can feel that familiar, saw-blade edge rubbing under my scapula, just like before.

I went through all of this for more than just a reduction in pain, although that was the primary goal. I wanted to swim again. I said it to everyone. And everyone assured me there was “no reason” why I couldn’t get back to it. Time and again. No reason. It undoubtedly would have been more accurate to state, “no reason that I can think of.” Which means there could be many, many reasons, and they just don’t know what they are, and prefer to deliver the supposedly comforting fiction that they therefore must not exist. Which is not comforting, to me, at all.

Oh, I understand the motivation. I play the same games with myself, often forcing myself to deal with uncertainty by dwelling on best-case scenarios instead of worst-case ones, because it doesn’t affect my ability to handle the outcome and why spend time feeling like crap if things are going to be OK?

But not for this. No, no, no. Not my shoulder. I have already denied, confronted, raged against, settled with, and been released from the possibility that I might have permanent pain and disability there. I just don’t have it in me, looking back on the emotional horror of those harrowing two years, to wobble back and forth on that same razor’s edge once more for months on end while game new doctors venture into the wilderness with me to try to figure out what’s going on back there.

The pain persists, both the residual mental fallout and the shoulder itself. I want desperately to comfort myself, to get in the pool, to slip into that quiet, pale blue and let the cyclic motions of my body and breath relax my mind. And I don’t dare. And I feel that deep ache at the pit of my stomach growing with the pain in my shoulder. No-one can help me. That’s what I think. It’s over.

And nothing but trees and darkness, everywhere I look.

About C. M. Condo

I am a late-diagnosed, high-functioning autistic living with chronic pain. I started this blog in March of 2014 as a way to try to process what was happening to me. It is my hope that by sharing it with you, we can both gain something, or at least learn something, from my experience.
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