Still riding the struggle bus (15 months out)
by, February 4th, 2014 at 03:42 PM (1483 Views)
About time for another update I guess, again it’s been a long while! Put on your buoys and paddles people, this is going to be a long one.
Unfortunately, things are still not much improved since I last wrote. After what I will call “The Incident” at month 8, I have been stuck in a frustrating cycle of setbacks. These cycles typically involve a few weeks of doing well – I can swim the entire workout with no gear and actually push myself/put effort into my strokes - followed by an “incident” which makes my shoulder “die” and I’m right back at the start again – kicking and swimming with fins, can’t put any effort into my stokes, and have to severely modify the workouts.
(Let me explain what I mean when I say that my shoulder “dies”. I am mostly talking about severe weakness and notable muscle atrophy in my shoulder/arm area, especially in my tricep. There isn’t really much pain involved, and it doesn’t seem to affect my flexibility. Sometimes I will also get a heavy/dull ache in various places around my shoulder, and more often I get a pinchy feeling or knot behind my upper shoulder blade. With minor incidents, my arm just feels a bit weak after activity - be it swimming or my PT exercises - but a few days rest will take care of it. With major incidents, I can barely hold the weight of my own arm up, and I can literally just watch my muscle shrink before my eyes. At its worst, I will attempt to flex my arm, but *nothing* happens. What is driving me nuts is that I have not been able to determine what exactly makes my shoulder die, other than activity in general. It has died after doing PT, after swimming, and it seems that it sometimes just dies without doing anything – though I suspect that things like doing the dishes or inadvertently sleeping on it can cause its death as well. Most times the death is a delayed reaction of hours or even an entire day later - which makes it hard to determine the specific activity which triggered it.)
Around the holidays, I was doing quite well. I think I got a good 4 weeks in before I had another “incident” around Christmastime. It was a fairly minor one on the spectrum of things – but I had had enough. I was so frustrated and knew (again) that something wasn’t right. So back to the doctor I went. I didn’t go back to my surgeon this time, because I felt that what I had been experiencing was something beyond the usual setbacks in recovery. I mean, my surgery was a “success” in terms of fixing my shoulder so that it stayed in its socket – I haven’t had a subluxation or partial re-dislocation in 18 months now and that is a big deal LOL! At this point I just knew that I was experiencing wasn’t normal, and I again feared that something else had gone wrong somewhere in my shoulder.
So I went to a physiatrist, who for over 40 minutes thoroughly poked and prodded me, tested my range and strength, and asked lots of questions. At the time of my appointment, my shoulder had been recovering from the last incident and was doing OK. I guess the good news was that she did not find anything “else” wrong with my shoulder. The bad news was that I didn’t get much of an explanation for what might be wrong. She said that she thought that my “muscles could just be really locked up” and that we were “going to try a different approach” to the situation. She then referred me back to PT, but this time around I would be going to what they call “manual” PT for a “musculoskeletal disorder”. Even though she did not straight out say it, that type of referral along with my symptoms screams nerve damage to me.
It makes perfect sense actually that what I am experiencing is some sort of nerve damage. I mean, right there in my medical record it says “BRACHIAL PLEXUS INJURY” – something that I have had since I first dislocated my shoulder back in 2008. Before the surgery, I actually often dealt with symptoms such as shooting pains down my arm and into my hand, deep pins and needles, and I couldn't sleep on my left side at all. But after the surgery those symptoms basically went away. Occasionally now I do feel subtle pins and needles, but it is nothing compared to before and the night time discomfort is gone for the most part. However, at this point I really do feel that the nerve damage is still there, and it is now perhaps manifesting itself in a different form (ie, episodes of sudden atrophy).
So that is basically where I am now. I do plan on going back to the physiatrist again soon to further discuss all of this, and hopefully pinpoint what could be causing the flare ups (or shut downs, rather). In the meantime, I have had two sessions of “manual” PT, and let’s just say I am not overly hopeful about it. Basically half of the session is spent on doing the same old exercises, and the other half is the PT doing “manual” work on my shoulder – basically deep massage. The physiatrist assured me that manual PT was “not massage” but I beg to differ, at least from what I’ve experienced so far. I think that any well-trained sports LMT could provide the same treatment (including the one I have been seeing bi-monthly for some time now). If in fact I do have nerve damage, then the one thing that will truly help me is TIME. Yet more time……sigh. The fact that my muscles are able to recover at any rate at all is a good sign I guess.
Before I sign off, I just want to acknowledge how much of a mental roller coaster the last few months have been, especially the last few weeks. It is SO frustrating. It has almost gotten to the point where going to the pool has become a negative experience (right now I am only going twice a week). I am trying VERY hard to keep thinking positively and it can be extremely difficult to at times. There may or may not have been tears behind the goggles at times, because this is so damn frustrating. It’s hard to feel like you’re doing everything you can to help yourself – PT, acupuncture, massage, drugs, EVERYTHING – and you have nothing to show for it. It’s hard to jump in the pool and feel so WEAK when the pool is what has made you feel so strong before.
But I am so lucky to have incredible teammates who have given me so much support. I swim with a group of wonderful women (and dudes) who have been through it all – multiple surgeries, failed surgeries, even CANCER for god’s sake! They overcome it and eventually get back to doing what they love – and they are damn good at it too as they whoop my arse ALL the time! I try to think about them when things seem hopeless. I hope that I am able to be in their shoes (fins) a decade or two from now and look back on this time and have it be all worth it……