Saturday, January 26, 2013

Confirmed Surgery Date

Here's my surgery fundraiser site:

There has been some upheaval in the administration at the Chiari Institute.  So, it took me six weeks to get a confirmed surgery date.  It’s so frustrating waiting weeks for a phone call.  I’m still having trouble getting phone calls back about pre-surgical testing and billing issues.

Anyway, by the time I was able to confirm surgery, my original date had been taken.  My surgery is now officially booked for March 14, 2013.  Pre-surgical testing will be the day before in New York.  In addition, I need to have a DEXA scan performed locally and I need an appointment with my primary care doctor for surgical clearance.

We purchased our flight tickets, reserved our hotel room, and booked a rental car.  My husband and I will be in New York from March 12-21.  My mom and my brother will also be staying for most of that time.  It feels a lot like deja vu.  We’ve done this several times...this is my 4th neurosurgery in New 5th total.  The last one was in summer 2010.  It was a very similar procedure: a Cranio Cervical Fusion Revision.  (They call it a revision, but it is really a total reconstruction.)  

Here's the plan for surgery this time:
They will remove all of my current hardware, which will involve a large incision and a lot of damage.  Then, they will install all new hardware.  This time, a new fusion technique will be used.  It involves shorter rods, but longer screws.  The bars in the fusion are 3.5 cm long.  There are three sets of screws:
2 in the pedicles of C2
2 in the lateral masses of C1
2 in the occipital condyles (at the base of the skull.)
This is supposed to provide for a sturdier, more durable fusion.

My symptoms have been pretty terrible recently, which is helping me to feel quite certain that I need to have this surgery.  I’ve had some terrible migraines.  I’ve been keeping up my regular exercise, and I’m in really good shape right now.  Unfortunately, on Tuesday night, I did my usual exercise, but took a little less rest time between exercises.  By the time I got home from the gym, I was in a complete stupor.  Unfortunately, this stupor lasted until this morning (4 days).  I was so out of it, and frequently non-responsive.  It was an extreme case of post-exertional malaise.  I really just felt like I was in a fog, and I couldn’t snap out of it.  Taking stimulants did nothing to wake me up.  Thank goodness, today, the fog has lifted for the most part.  I’m more aware and alert, and spending a lot less time staring at nothing.  I’m going to have to be more careful with my exercise, as my body seems to be less tolerant right now.

Well, that’s the update for today.  I’ll be busy trying to arrange for testing and managing health insurance issues.  I’m still teaching a few of my favorite piano students.  Only 5 lessons per week right now, to keep it manageable.  I have a few weeks left with them, before everything changes.