Super Science Week: Let's Learn About IIH

I got out of the hospital last Friday. Only 4 days in ICU, and one day in a regular unit then home, home, home. I honestly cried when my husband walked in to get me Friday at about 11:00am.
I feel... um... well, tired, achey, nervous, scared, stiff and sore. That about covers it all.
It seems my doctor, Dr. Peter Ventura of Tooele, Utah is quite the bulldog. He kept shakin' until the pieces started coming together. I love that kind of doctor, he wants to know "why".
First, before starting the operation they kept me awake to do a spinal tap and to monitor the pressure in my spinal fluid because the pressure changes when you go to sleep.
Then Dr. Ventura didn't just fix the obvious leak, he says he remembers that in my initial MRI that I had fluid in one of my upper sinuses. Initially he thought it just spilled over from the hole he found at the top of my nose, but figured since he was up there he'd patch the top of the sinus also, just to cover all bases. So he took a skin graft from my stomach, used glue made from blood taken from punctures on both my ankles. He finished up with a "rhino rocket" packing and out I went from surgery.
Now the hard part; every hour the nurse had to drain 10ml of spinal fluid from my back. I could feel every molecule being pulled out and as they were pulled out, my headache got worse and worse. Thanks for blissful morphine induced sleep!
One day, maybe Tues or Wed, the doctor tells me the problem with my spinal fluid pressure. He says most people are under 20 (whatever the units are, like cm/H2O maybe?) and actually most of those people are 5-10. I, however, was at 30! crap. With that high of pressure I am in serious danger of losing my eyesight. The pressure on the optic nerve as it leaves the eye, going to the brain can lead to permanent damage. So Dr. Ventura sends in an eye specialists to see me immediately in the hospital. Good news, so far no noticable damage!
The next day Dr. says he has been talking to someone and/or researching and there is a drug now, a diruetic, that reduces the amount of CSF and therefore reduces pressure: Diamox. He puts me on this immediately and from Wed afternoon to Thur afternoon they only monitor my spinal pressure without withdrawing any liquid. It stays down around 18! With that, out came spinal tap and out of ICU and to a regular hospital bed. Friday he unpacks the "rhino rocket" and I go home.

But for some light reading check out: www.ihrfoundation.org Click on "What is it" under the title and go to symptoms. Under "other symptoms" it mentions:

"spinal fluid leakage from the nose is the result of high intercranial pressure erosion of the bone separating the skull from the nasal cavity". Hmm, sounds familiar.

Also, for women, it seems that weight loss often helps relieve the cranial pressure problem, not always but often.
I see Dr. Ventura again tomorrow and maybe find out where I go from here besides to Weight Watchers!