text: chiari malformation...just curious? i am just curious if anyone has chiari malformation and if you had the surgery, where and with what doctor? 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.  -nicole  *edit below*  the 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.