syringomyelia: a love story -- zen and phamacutical grade coffee

I originally intended to get this posting up in March, but life -- with all its ins and outs and eccentricities -- had other plans.  And if by plans, you take my meaning to be my steadfast practice of the art of procrastination, well then, you'd probably be half right.  As to the other half of the equation, let's just say, I've been framing and reframing this post in my mind for months now, wanting to get the tone and details just right.  And I think I have.

Results

For those of you who've been keeping score at home and following my adventures with syringomyelia, you may remember I'd scheduled a third follow-up appointment with my neurosurgeons for the beginning of March.  This appointment followed a third MRI and was scheduled at this time for two reasons: 1).  It was three months post the previous appointment and was enough time to show if any changes in the size of my syrinx had occurred.  And 2).  It was a checkpoint to see if I'd be given the green light to ski (it was still early enough in the season to get a few weeks in on the mountain).

And even though I'd like to say otherwise, diagnostically the appointment was a bit of a mixed bag.  Looking at the MRIs, and comparing them with those taken in December, it was clear there wasn't the kind of reduction in the syrinx we'd hoped to see.  In fact, there was very little change at all -- the shunt, for whatever reason, didn't seem to be working.  My neurosurgeons hypothesized as to why this might be, suggesting either the shunt was clogged or its placement, in the dura surrounding my spinal cord, wasn't allowing for proper drainage.

Either way, the only solution would be to open me up again and take a look.  If it was the former, they could possibly unclog it or put in a replacement. And if it was the latter, they could remove it from the dura and reroute it instead into my abdomen -- a procedure requiring a much longer shunt and two surgeries.

Admittedly, this news was a bit disappointing. The doctors had said after my previos appointment they typically saw little change between the surgery and the first three months, but that the second three months often showed a marked improvement.  Just the same, I was prepared for whatever news I might receive that morning, and any disappointment I might've felt in those initial moments was nothing more than a brief wave washing over me.  I'd known all along the success rate of shunting wasn't very high, and that my surgery was a play against the odds more than anything else.  As I said before, I knew if I didn't do anything things would probably continue get worse, and if I had surgery, well, I knew there was a chance they could get better.I suppose if one were to look at this as a "good news-bad news" scenario (which I don't ordinarily do, but for the sake of illustration, I'll do it here), getting these results would probably be considered the "bad news". The flipside -- the "good news", if you will -- was I was given the greenlight to ski again.

But here's the rub of that latter news; in the end, I made the decision not to ski. Don't get me wrong, I'd wanted to -- even jonesed for it while I was recovering (an El  Nino winter was in full effect and there was lots of snow in dem Sierras) -- but the the thing of it was, I was still in a lot of pain. This, plus the marginal/beat up shock systems on the bi-skis I used and I thought sking at that time might not be the most comfortable or enjoyable experience.This was a tough one, and I seriously mulled it over -- changing my mind hour by hour, day by day, right up until the last day of the season.  But in the end, it really felt -- and this is as close as I come to a calculated decision when skiing is on the line -- the right thing to do was to postpone my charging until the following season and see where I was then.

The last word (…or is it?)

It's been six months since that appointment and I suppose the obvious question one might be asking is, "how am I doing now?"

First, let me just say, that despite the surgery's lack of success, I don't regret having it.  I alluded to it above, but I think it bears repeating here, I made my decision based on the best available advice I could get and a protracted amount of research.Would I recommend the same surgery to someone else?  Probably.As it stands now, there aren't a lot of options out there for the treatment of syringomyelia, so perhaps even if the odds of success, via shunting, are slim, it might be a risk worth taking.  Hell, even if the odds of succeeding were as slim as 1 in 10, and you happen to be that 1, well, then surgery was the right thing to do, right?

Which leads me my potential follow-up surgery.  I say potential, because as of this moment I'm really not sure what I'm going to do.  What I know is that I want to travel and another surgery means at least another six months of recovery -- minimum -- and I don't want to push  my travel plans back another year, especially when my future with syringomyelia is so uncertain.

But even without any travel plans I'm not so certain -- if push came to shove -- I'd want to schedule another surgery anyway.  Just the thought of the recovery period alone turns me off, and a longer shunt running through my body?  No thank you.But let's just say for the sake of argument I did make the decision to go through with it (in order to find out what was happening), part of me feels I'd just have them remove the malfunctioning shunt, staple me up again and be done with it, letting the syrinx do what it's going to do.But that's just what I'm feeling now, I could change my mind.  I'll do my traveling, get some more MRIs, consult with my doctors again, and reassess things at that time.  What I don't know could fill oceans, but what I do know is I can't make a decision about the future when it doesn't even exist.  In other words, surgery isn't out of the question, but I wouldn't put good money on it.

The real

As to the physical side of things; there seems to be a continued decrease in sensation and mobility where the syrinx is most pronounced (most of my spine).  My left arm, as with before, is still losing function, but at what rate it's difficult to say.  It may have slowed, which would be good, but like I said it's difficult to tell.  I still have pain in my neck and shoulders -- sometimes severe, sometimes not -- which I choose not to manage with painkillers, going instead with something stronger -- coffee (strange, I know).*

But the above are symptomatic facts only, and aren't in any way mentioned as to suggest it's how I define my situation. I simply lay these facts out there for comparison purposes only.  I've received a number of emails from other folks diagnosed with syringomyelia and, above all else, they've thanked me for both my candor and specificity where my own symptoms and experiences are concerned.

When I was doing my own research into syringomyelia, it was the personal stories, and the details contained therein, that meant the most to me.  I wanted to get some sense of what I could expect, symptomatically, before and after any surgery or with or without it.  As a quadriplegic, I knew my situation would be unique, but I also understood there would be some similarities. And it was these similarities that allowed me to be most prepared for the road that possibly lay ahead.But whatever happens, I'm at complete peace with it.  And if that means I continue to lose function and sensation, at or above the level of my injury, so be it.  I understand that everything about this body -- this life -- will eventually go, and if it's syringomyelia that accelerates this process, well, aren't I a whole lot better off if I can accept it?And so with that in mind, I'll leave you with a final anecdote that I hope illustrates where I'm coming from and perhaps provides a little food for thought.

Salad plate

A couple of postings ago I wrote about the difference between my two chairs, and the pros and cons of using one over the other.  And while it basically came down to degrees of independence and pain, the fact remains the electric chair is the only chair I can use unassisted.

At the end of May I had plans to go to a concert with a couple of friends, and so that morning when I got up, knowing I also had errands to run, decided to get into my electric chair.  It had been awhile since I'd used it, but I figured the errands, coupled with our taking the BART to the show, would make it the most sensible choice for the day, despite any pain I might have to endure.

That was the thinking, anyway.

Somewhere after six hours, with the pain building incrementally, on my way to pick up a sim card with my friend, I needed to stop (much like I always do to center myself with the pain), and then it hit me -- an overwhelming sense of clarity -- an epiphany, if you will, where I realized I could no longer use that particular chair.  And it was peaceful, and I was fine with whatever the future might look like, with or without it.You see, there's an ocean of difference between intellectually accepting something and actually accepting something, deep down in the very core of your essence, and what happened at that moment was the latter.

Up until that time I'd accepted things were going to change, in all sorts of ways, but I wasn't at peace with it, not really.  I was still hung up on how it would all go down, rather than having faith that -- regardless of how things unfolded -- it'd all work out.That epiphany was beautiful, if for no other reason then it allowed me to surrender to the moment and remind me that change is ever occurring, and whether we struggle against or not, it's happening.And if I need to leave my electric chair behind for now, well, sure, it'll be different, and there'll be a whole new set of challenges and hurdles to overcome, but I began my post injury life in an acoustic chair and if I managed then, why should it be any different now?

Sure, I'm not as strong as I was back in the day, and Berkeley is a lot more hilly than Newport Beach, but I've got friends and they're just as adept as ever at helping me navigate those things which I can't.

Bottom line; the options may have shifted, but so to has my perspective, and, quite frankly, all is just as it should be.

Now, dating might be a bit of a trick, but then when isn't it?

*Coffee? I know, weird, right? But the thing is, it works.  Of course, I don't think you're going to find anything out here on the Internet to support this treatment, but physiologically here's why I believe it does the job: Oftentimes -- especially in the morning when I first get into my chair -- my pain so severe it has the tendency to make me lightheaded.  As I struggle to stay above this lightheadedness, the pain increases, which in turn causes more lightheadedness -- a sort of feedback loop, if you will; one contributing to the other.  Anyway, it occurred to me if I could somehow interrupt this cycle, namely interrupting the lightheadedness, the pain might become a bit more manageable.  Coffee, being a stimulant, seemed like the perfect elixir for this problem.  By increasing the blood flow I was able to minimize my lightheadedness, and thus focus solely on the pain.  It's not 100% foolproof, but it works most of the time and that's good enough for me.  Again, it's probably not medicine you're going to find substantiated anywhere, but it helps my particular problem and that's all that matters.  Your mileage may vary.

pau.