Frustrated with Local NS~Pseudotumor

[Guest guest]

Hi All

I wrote some 3+ weeks ago that I had a big jump in my ICP from taking a Medrol

dose pack. Well, things got so bad earlier this week, that I called my NS here

at home to evaluate my pseudotumor. My right pupil keeps going to pinpoint in

size, I feel like someone is strangling me and the pain is so bad I can't stand

it anymore. I talked with his nurse and the reply I got yesterday was that if I

need evaluated, I should go back to NY. This particular NS is well known for

treating chiari, he has spoken at the conferences in the past, and he diagnosed

me and was my doc for 7+ years. I want to share with this trifecta group, that

even though he has written otherwise, when you are in his office, he is

completely unwilling to accept the " trifecta " as having anything to do with

Chiari and was furious that I left his care and decided to go to TCI after a

horrific year of pain. He told my aunt (trifecta also) she would end up

paralyzed from fusion surgery, even though she has basilar invagination that he

refuses to recognize. I thought it was important to share that a so-called

expert chooses to ignore the trifecta and what TCI is learning and that his ego

will not even allow him to treat me for the pseudotumor that HE diagnosed. I

couldn't sleep last night, as I was so angry at him, so part of this message is

just to vent.

I will not state his name publically, but if you are from my area (Pittsburgh)

and need any information, I'd be glad to share my personal experience.

Thanks for listening and for always being here,

in Pittsburgh