My name is Shawna and I was diagnosed with IIH March of 2010.
Since then I've had 27 LPs (every two weeks for the year), an optic nerve sheath fenestration, and an LP shunt (that is presently not draining correctly, so I'm back to LP's again).
I'm currently only taking Zonisamide, but it's day 4, so no real news to report on the effectiveness.
One of my huge bug-a-boos is the seemingly insane WIDE array of treatment plans out there. Okay, not just the variety, but the fact that these doctors seem to be telling their patients that the way they're choosing to treat is the "only" way or the "best" way. Even within my own team of doctors, they can't seem to agree. My neurologist was happy ordering my bi-weekly LP's for over a year, but the surgeon 'bout peed her pants when she heard this, and got angry. Well, Miss Fancy Pants Surgeon, your little shunt didn't exactly work wonders, now did it?
My spirits are high, probably because I'm not just wired to be a depressed or sad person. There's just so much bad information floating around out there (the other day on another forum some poor woman was telling peeps that the only reason they do LPs is to "drain 5ccs to send to the lab and to get an opening pressure, and the risk of infection is too great so her doctor won't do one."
I didn't have the energy to tell her they never send my CSF to the lab anymore, and if it shoots out like a geyser, the doc just drains my magic 40cc's and colors me happy. I'm sure he's happy, too, what with the amount of money he's made off me.
Okay, I've rambled on long 'nuff here. I'm not a forum sort of girl (because of my previously mentioned bug-a-boo) but I liked the notion that this place seems a bit different. We all need some encouragement.
Looking forward to making some new friends.