Friday, October 26, 2012

The Not So Fuzzy Details

From my friend Hetty.. See last post for the fuzzy version, cautionary tale, and plea for help. (On phone now will update later with link, but you can navigate!)

If you want to provide update, I will give you some information if you want to share.

what i have is a cerebral csf leak. when they were doing the original surgery to fix my septum they found a deterioration of my skull (bone) which was literally a hole in my head the size of a golf ball. a second surgery got it down to a pencil point or a bit smaller than an eraser head. the leak continues. the "headaches" which are spinal headaches (much more severe than migraines) are 24/7 as you know and typically at a level 4-5 consistently, but spike to 10+ if I have been vertical for too long, or if the weather changes, or if i've overexerted, or just because......

since the head trauma in 1999 (undiagnosed skull fracture) that just grew larger from the "rotting infection" that was building in my head and the sinus blockage and infection was significant, they determined i have suffered many concussive episodes due to the lack of cerebral spinal fluid. one doctor described it as a roll being bounced around inside a concrete box. i was a runner for many of those years.....imagine that impact!

there are no guarantees that any procedure will be a permanent repair or that the bone wont deteriorate more - or again. there is a risk of meningitis,but i think compared to the risks of "opening my skull and pushing my brain out of the way to rebuild the bone", it is a minimal one. the other option is to repeat the surgeries they have already performed through the sinus cavity, again with no guarantee.

that should give you a clearer picture of what is happening with my swiss cheese brain.


  1. I don't have very clear what's your blog about, you confuse me!

  2. wow.... makes me wanna check up on my brain and all my headache problems.

  3. Wow. Borg. This is just scary. I hope you'll keep us posted on the Mayo Clinic and other developments. Perspective. Right?