September 30, 2007 --

     For those who live with Chiari on a daily basis, setbacks are a way of life.  In the nine years since decompression surgery, I have lost count of the number of times I have felt like I was making great strides, only to slip back into the land of pain and inability to do things.
     At this point my biggest problem is that the muscles in my neck, upper back and shoulders go into spasm very easily.  While this may not sound like much, it can actually be very limiting at times.  Besides the near constant pain on the right side of my neck, it can interfere with many daily activities because sitting in most chairs becomes unbearable, as does standing for more than a minute or two.  Despite this, I have made great strides over the years through hard work and discipline.  In general, today I am able to do things that I never thought I would be able to do again.
     In particular, this past summer was going really, really well.  I was doing a lot of swimming (which I find helps a lot) and my general activity level was very high.  I had started playing guitar again after a 20 year break and quite to my surprise, not only did I retain some skill, but I was able to play without much pain.  By the end of the summer I was playing for an hour at a time, something I never thought possible.  The peak came on my 40th birthday when I climbed a 50 foot rock wall.  Not only did I make it to the top, but I did it easily and with no pain whatsoever.
     Then, as has happened so many times before, came the setback.  Usually when I get into trouble, and by trouble I mean the muscles in my neck get so still and painful that I can't seem to do anything and nothing helps, it's from a culmination of things as opposed to just one thing.  This time it could have been from throwing too many pop-ups to my kids or trying to do one too many push-ups.  I've learned not to obsess over what caused it; it almost doesn't matter.  The pain and frustration were back and things that I was doing easily just days before were now impossible.  I couldn't even hold the guitar without excruciating pain.  I was in a place I was unfortunately very familiar with.
     In fact, I've been down this road so many times, there are a few things I've learned:

• First and foremost, it's important not to panic.  If you're experiencing a setback you have to have faith that things will improve again.  If you've already come a long way back, think about how far you've come and how much better your life is than it used to be.  I honestly think this is the most important item, everything else is secondary.  You have to believe things will get better and over time you will learn not to let the inevitable setbacks get you down.

• In my experience (and everyone is different), it took a long time for me to learn that the best thing to do was to stop almost everything that might aggravate my neck and take a very conservative approach.  As someone who likes to be active, this is very difficult, but once my neck muscles are in spasm they seem to get sparked very easily.

• Fight off the depression any way you can.  It's so easy to slip into a funk when symptoms rear their ugly head, but this will only prolong the recovery.  Watch a funny movie, indulge in some food, do whatever it takes.

• Once things start to settle down, be disciplined about increasing your activities again.  Set a plan and stick with it.  If you're like me, then being too aggressive can lead to a downward spiral which you don't want to be in.

• Remember that in order to have a setback, you had to have been making progress.  In other words stay positive and stay focused on getting stronger even when you're feeling weak.

     In the end, it doesn't matter if your residual problems are headaches, muscle pains, fatigue, or something else.  chances are they come and go and that sometimes you feel good and other times you feel bad.  So if you're experiencing a setback, keep in mind that the one good thing about setbacks is that, hopefully, they are temporary.
     As I work on this issue, it's like there's a knife in the side of my neck.  It's almost unbearable, but it's already not as bad as it was a couple of weeks ago.  Although the pain is still there, I'm slowly starting to do things again and am heading in the right direction.

--Rick Labuda

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