First Seizure

Sorry guys!  I've been extremely tired this past week, so that's my excuse for not writing on my blog.  The BCNU and Avastin is working hard to keep me here for (hopefully) a long time to come.  There might be some little break now and then, but I will keep updating.

So anyway, I was mostly fine after my surgery.  There were deficits I learned to live with.

About 6 months after surgery, taking my Dilantin like a good brain tumor patient does, I had my first seizure.  As I was getting pills out, my right eye rolled back in my head, and I felt my right arm go tingly and numb.  It was, at that point, I went downstairs to tell my dad something was wrong.  Unfortunately he was sleeping, so I woke him up.   My dad was confused, repeatedly asking "What's wrong?"  I had lost the ability talk again, so try I was trying as hard as I can, but it was no use.  My neck started turning to the right, against my will, and my eyes were going right, too.  I just rode out the seizure, helpless, praying that it wouldn't turn into a grand mal.

By then, my mom was downstairs.  After I came out of it, everything was slow coming back.  I told them what happened.  (I think) My mom called the neurologist-on-call.  He urged me to calm down, and see my regular neurologist the following week.

It was a partial (focal) seizure, meaning it's not the grand mal seizure I originally it could turn into.  And it wasn't a petit mal (defined as "staring spells").  I was constantly aware what was happening to me, and it took me a long time to calm down.  My brain had just revolted, probably they had just been poking around in my head - which is known to happen after extensive brain surgery.  That first experience was a doozy.  I saw my neurologist that week, and I don't remember what happened to me, but am pretty sure that they upped my meds.

There's two schools of thought among doctors.

1.  It's okay to have some breakthrough seizures, as long as seeing you're seeing a neurologist and they are well controlled.
2.  IT IS NOT okay to ANY seizures.  EVER.

Situation number 1, which I thought was okay, allowed seizures to occur more frequently.  This led to called my nurse practitioner to report every seizure I had, who (in cooperation with my neurologist) kept raising my doses.  I did this over three years.

I got a new job, moved out my home into an apartment with my buddy Frank.  We were living there for 1 and a half years, and in that time I (re-)met bride to be, Summer Overman, in August of 2008.  That's a story for next time!

P.S.  It wasn't until I met and was under the care of  Dr. Nina Paleologos (a neuro-oncologist who that specializes in oligodendrogliomas, among probably others) that I changed my mind about seizures.  Seriously, if have a brain tumor and having break though seizures, it's worth asking your doctor about the damage it does to your brain.  I can't go back to situation number 1 again.  She is coming up in my story later.