Revision Surgery - Full of Surprises

General
1

My revision surgery (on 10/21/13) was full of surprises.

What my surgeon thought was going on from my MRIs (different surgeon than my first surgery):

  • Pseudomenengocele
  • CSF leak

What really was in there:

  • So much pressure from my CSF that my dura patch stretched so severely that it looked like a pseudomeningocele. It was so thin that it couldn't hold a stitch (after just 6 months)
  • So much scarring that my surgeon said that he had never seen anything like it before
  • My cerebellar tonsils were actually scarred to my brain stem. Stuck to it. Crazy.

Where things are now:

  • I'm taking things very easy while recovering - lots of bed rest
  • I'm very thankful that so far I don't seem to have a CSF leak. Apparently I had all of the classic symptoms of one after my first surgery, including the horrendous pain and throwing up, but no one there ever even tried to diagnose me. Still mad about that one.
  • I'm on Diamox while I heal to reduce my CSF volume. It may become a permanent thing or not. Or there may be a shunt in my future. Hopefully I'll know more at my 6 week MRI and check up

This is quite the journey! I was telling my friend that after all of this I should automatically turn into Wonder Woman or Xena: Warrior Princess. Sounds about fair to me. : )

2

I'm so glad you are doing better now, you've had quite an ordeal! Keep us posted on how your recovery goes! :)

3

Xena Warrior Princess, I’m sooo glad you posted I was wondering how you are. Thank god you went in for a second surgery! Your poor brain! I hope you just get better and better and better.

Jenn

4

Thanks, everyone!