P.S.
bailey, I just found the CSF Leak forum hiding away there in a subforum. I'd actually forgotten it was even there.
It's rarely used, but might be worthwhile posting your message over there, as you just never know if someone might come along and be able to help you.
good luck with finding the info. that you need.
http://neurotalk.psychcentral.com/forumdisplay.php?f=78
CSF Leak Forum
Here is the Rare Disease Subforums
http://neurotalk.psychcentral.com/forumdisplay.php?f=87