I was watching the 2011 IHRF patient conference proceedings on DVD. They're available in the IHRF online store.
http://www.ihrfoundation.org/intracranial/hypertension/store/C79
Anyway, during one of the sessions Dr. Katz from Ohio State Univ. said that he isn't prescribing as much Octreotide as he used to, due to insurance companies no longer covering it, and a success rate that isn't as high as the greek study.
Does anybody in here have more information on this? For me it's either Octreotide or neurosurgery. It's a no-brainer which one to try first, but I need all the facts. Or at least whatever information people's neurologists have told them. Anyone have knowlege to share?
BTW, brand name Sandostatin (octreotide) is about $10K/month! Eeek!

I haven't seen any mention of it at all since 2011. I suppose the high cost with little success did it in.

Have you already tried all the other meds? There are many to try other than Octreotide.

BTW, I got an lp shunt because I was too chicken to do the vp shunt. Might that be a possibility for you if the meds don't work?

did the Octreotide help? Im, sorry... i read a story on this, this was next to ask my doc about since the shunt is the only thing left for me too.... I heard it was way expensive too, but if there could be 50% improvement even I want to try! I havent heard anyone mention it to me at any appt, and I wonder why if it has helped some...

There is a group on Facebook, created just for this topic:

https://www.facebook.com/groups/105685712814270/?ref=ts&fref=ts



For sure have a close look at what they are saying.