Originally Posted by LisafromMaine

My name is Lisa, I am 45yrs old and was Dx'd with IIH/PTC (Idiopathic Intracranial Hypertension aka PseudoTumor Cerebri) 1.5yrs ago. I went the route of conservative treatment (lost 95lbs, supplements, Diamox, repeated LP drains) for as long as I could until I was told I could no longer work (Sign Language Interpreter). That's when I decided to give in and go with a VP Shunt last month.

Since the shunt - two Er visits - one to adjust the shunt to lower the pressure threshold, the other for rebound headaches from abruptly stopping the narcotics after surgery (my bad!) all "plumbing" systems are in perfect working order and after four weeks post op I am beginning to have hope and animation in my life.

I join this group looking for folks who also have VP Shunts as adults and how it impacts their lives. I want to be able to travel by plane again - was unable before surgery. I'm fearful of the diversity I have read and the different kinds of planes/flights that impact us adult passengers. I am able to drive successfully without discomfort at 900ft which before I was in agony and vomiting and confused. Yet I read that this altitude via car is different than the type in pressurized cabin. So I hope to be educated enough to choose a plane wisely for a test flight

I just look forward to connecting to people who understand what it's like to be a "existing" with this rare disorder and its array of symptoms yet also choose to focus on "living" full lives WITH what we have.

Much love and compassion,
Lisa