So for those of you with Chiari looking for a happy ending, I have some bad news.

My symptoms (with the exception of the truly horrific headaches) have come back.  With a VENGANCE.  I'm in more pain than ever, in more of my body than ever.  I have difficulty walking more than a few steps, when I can walk at all.  It takes as long as ever to wake up in the mornings- but without the Provigil, I'm barely able to get out of bed for 4-5 hours.  I use a walker or a motorized chair pretty much full time.  I'll use a cane to get to the bathroom next to my bedroom; the walker is too hard to manage around the doors if I'm too tired/hurty.  I sit to shower, my husband helps me wash my hair.  He has to help with my shoes most of the time too.  I only wear slip-ons or zip-ups now; anything with laces is kind of a cruel joke.  I've been on medical leave for 2 months.  In the 6 weeks before that (right after I went back to work after summer break) I missed 6 days of work before starting my leave.  Four of those were days I went home early- one was when I FELL OUT OF MY CHAIR DURING LUNCH AND COULDN'T GET BACK UP.  Another was when I had a seizure in the mail room.  The others were because I was so shaky and visibly pained that I couldn't spit out a single complete sentence while trying to teach.  On the other days, I routinely had to stop talking mid sentence for 30-60 seconds while I winced in pain.  I would forget what I was talking about and the students had to remind me.  It was scary for them.  It was embarrassing for me.  And the pain was incredible.

For 2 years, I've chosen to ignore the pain and push through to stay in the workforce.  Anything that could get the pain under control (and I mean, like just down to a 5 or 6; by no means "gone") made me so loopy I had no business supervising students.  While on leave, I'm able to take those meds.  I can have a "lie down" after a spurt of light activity.  I can actually manage my pain and get the edge off enough to think and spend time with my son and find some joy in living.  The thought of suffering like I did before I went on leave is actually scary to me.  Even if I could find the fortitude to "suck it up," I don't think I could actually do my job in a responsible way.  I can't make decent decisions on the drugs.  Without the drugs, the "background noise" is so intense I can't stick to a lesson plan.  I can't get around my classroom.  I can't use the tools safely.  I can barely open the big door to my classroom.  I have to pee more often than I have passing periods, and it takes me so long to get there I'm late to almost every single class.  Worse, there were a few times I couldn't get coverage to go to the bathroom and had accidents (that fortunately, I don't think anyone noticed.)

I don't know what to do.  Obviously, I can't keep working.  My husband can't work because I need round the clock care.  Some of the doctors who warned me that half the people who have decompression don't improve or worsen have declared my operation a "success" and act like it was a miracle cure and that my symptoms might not be from the Chiari (which is total BS based on every single study and scientific journal I've read.  Most studies cite the pre-surgery brainstem compression as permanent and non-resolveable.)  Others have basically shrugged their shoulders, told me it was non-resolvable and the best they can do is try to make me comfortable.  Which at this point, I can live with.  I'm no longer so desperate to live a "normal life" as I was before the surgery.  The pain is impossible to ignore any more- I have to treat it.  And so far, that's meant not working.  Which sucks.