text: I don't have it, but I do know two people with it in real life and people with it online.  I have ideopathic intracranial hypertension.  Um... are you talking about the decompression surgery?  The person I know who had the decompression surgery had type 1 as a child and I have not seen him in a long time, the person who developed symptoms as an adult still has not had the surgery- she is waiting until it gets to where she doesn't have the option not to have the surgery.  Both went to University of Chicago Hospitals I believe.  Please e-mail me if you want.  You should be able to find some support site online.\n\n-Nicole\n\n*edit below*\n\nThe surgery is HIGHLY invasive.  Google "chiari decompression".  It is also like rolling a dice... no certainty that it will or will not work.  Do you research, there are neurosurgeons that specialise in it.  Some people with Chiari type 1 live there entire lives and never know it... so the idea that it is a fatal condition is by no means accurate.  For some people it is fatal... see this website- support groups help, people with Chiari would be more knowledgeable than Yahoo Answers. http://health.groups.yahoo.com/group/chiari/ .  Best wishes.