Sunday, June 28, 2015

Another Update to the 26th Surgery

Today has been a month since my shunt has been clamped off.  I should be more excited about this but I'm not because I am still not completely feeling better or living a normal life.  I am grateful not to be over-draining anymore though.

Father's Day weekend things went pretty sour.  I had incredibly high pressure in my head and started vomiting.  I called the on-call surgeon and he suggested that I wait until Monday so my doctor could get me in for a lumbar puncture.  I did call the following Monday but they decided to do an emergency CT scan instead.  I never did find out the results of that scan like I was told I would, but they did schedule the lumbar puncture for later that week.

My doctor's office told me I would have to lay flat for forty-five minutes after the procedure and when I get to the hospital they told me that it was actually two hours.  I was at the hospital for five and a half hours total.  (I was less than thrilled about the situation considering that the hospital has become my second home lately.)  My mom was still in town and was able to take me to and from the hospital and take care of my son while this was happening.

Surprisingly enough that was my first lumbar puncture.  The procedure took longer than anticipated because they were having a hard time getting the CSF out.  That didn't surprise me at all because they have had trouble getting CSF out since I was diagnosed with slit ventricle syndrome many years ago.  So after hitting two nerves, they finally got the right spot.

I started feeling better almost immediately.  Unfortunately that only lasted about 24 hours.  I am back to not being able to lay flat, having mild pressure headaches all day that get worse about an hour before my medication is due and I am in terrible pain at night. 

The day after the lumbar puncture, I had my first physical therapy session since being released from the hospital.  My walking had been improving.  In fact I am no longer using the walker but am back to using the cane again.  The physical therapist determined that I only have trouble walking when my pressure is either too high or too low.  When I had to lay flat during a portion of the exam, my left leg kept giving out like it normally does.  Unfortunately there is nothing they can do for that.  The pressure has to be corrected since my walking problems are not a muscle issue.  At this point, I don't have to return to physical therapy anymore.

I have another CT scan in July and see my doctor a few days later.  I am still not convinced this is going to be a permanent solution.  Until then I am taking things literally hour by hour.  This morning I wasn't feeling too bad but my headaches and walking got worse as the day went on.  For now, it's just a waiting game.