Warrior?

“Unleashing his hell, you will not even hear the bell.  Maybe you're strong, but you don't stand a chance.”  I figured I’d start this post with some lyrics from a song called “A Warriors Call” by Volbeat.  They are one of my favorite bands and they will show up again as this post develops.

Chiarians often refer to them selves as ‘warriors’ and/or ‘fighters’.  When I was first diagnosed I had a hard time accepting the fact that people referred to themselves in those terms.  I figured I would breeze through the surgery and cruise through recovery and there would be no need to be a warrior or a fighter.  Well, as usual Chiari has taught me that it won’t just waive the white flag and go away, that this really is a fight, and that Chiari will fight dirty.  Looks like I’m a ‘warrior’!

The fight continues…

My last post detailed the problems I was having with my legs, the headaches, the fact that the back of my head was a swollen mess and that I was finally going to PT.  I started PT and at first it didn’t seem to be working.  I would leave there feeling pretty good, but after a few minutes in the car my legs would start hurting.  Suddenly last week my legs began to feel better and so did my head.  I had 5 glorious days of no leg pain and very little head pain.  I felt that I had finally won a round…Then came Memorial Day, I was doing my PT exercises at home when my left leg began to scream at me, Chiari was making a comeback…Damn it so much!!

Now this wasn’t a complete comeback for that little bugger.  My legs bother me but the pain is nowhere near as bad as it was a few weeks ago.  Unfortunately my head has been killing me the last few days.  It has been a series of classic Chiari headaches…I’ll feel fine, but then I’ll yawn or move the wrong way and get hit with a blinding headache.  Luckily they don’t last long, they are a short duration but wow do they hurt.

Big Baby…

That’s me, a 6’4” baby.  Thursday I had to go to Albany Med for a MRI of my head, neck and spine…No big deal right?  It’s not a big deal unless you are claustrophobic like I seem to be.   At first I thought I was going to be OK, because this machine had headphones.  The technician asked me what kind of music I wanted, when I responded with “the hardest stuff you have” she gave me that look that said “aren’t you a bit old for that kind of music”.  She informed me that they had Pandora Radio so I told her to type in Volbeat for me, after a brief pause she finally asked me how to spell it.  She gave up trying to remember the spelling and had me spell it once she was back in the control room – or whatever they call the room with all the computers.  I did pretty good for a few minutes then my brain got the best of me and the panic set in.  They had to pull me out so I could sit up and catch my breath.  Back in I went…I would get through a few scans and have to repeat the “get me outta here” drill.  After an hour of torture they were ready to scan my neck and spine which meant they could take the cage thing off my head.  What a difference that made.  I went back into the tube without that damn thing around my head and promptly fell asleep…they finally woke me up to see if I was OK and to tell me to stop moving my legs.  I informed them that I had fallen asleep and my legs do their own thing while I snooze, they made me stay awake since there was only about 10 minutes left.  Hearing that 10 minutes was all that was left made me very happy.  Then they pulled me out and informed me that the doctor wanted 2 more scans with a pulse-ox reading that would take another 15 or so minutes.  I thought to myself “no big deal”…then I saw them reach for the cage thing…oh hell no!!!!  I tried bargaining my way out of having to use the cage but that didn’t work.  Back in I went, the machine made some noise…then silence…no music no machine noises no nothing…PANIC!  Finally they pulled me out; apparently they weren’t getting a reading from the pulse-ox sensor.  Back in I go…same thing happens only with longer silence and more PANIC.  The third time was a charm, the sensor worked and the scan met the doctor’s expectations.  After 2 and half hours I was outta there...I was so excited to be done that I actually did the happy dance on my way to the changing room.  It had taken so long that there was a shift change while I was in that damn tube.  I told the new technician that it was nice to meet him and that I sincerely hoped that I never see him again.  I really, really, really hope I never need another MRI.

As soon as I get the MRI results I’ll post them. Aww crap, I just yawned…I hate you Chiari!!!!!