I have Pseudo-Tumor Cerebri as well as Trigeminal Neuralgia.
I had multiple surgeries for the PTC years ago, ending with a shunt being put in my head.
My TN developed a couple years after this..and has steadily advanced to the point now that i'm on three different drugs and am still having issues now and then.
So, while talking with my PCP, i mention that i'd like to have a neurologist involved with the TN care. PCP refers me to one. I get to appt with said neurologist and begin discussing TN. Seeing as how i was not in crisis pain at that particular moment, i guess,...he didn't seem too interested.
However, throughout the visit, in an effort to give a complete medical history, i also mention my PTC..and well..THEN he gets interested.
Lots of questions...ending with an immediate referral to a neurosurgeon.
Neurosurgeon hears the words pseudo-tumor cerebri...and whoosh! a whirlwind of tests and procedures and my god is he on a roll trying to get this scheduled and that scheduled.
I never said i was having any problems with the PTC. That's not why i asked to see a neurologist.
Sometimes, i think doctors are more interested in the uniqueness and "fun" they can have with conditions...than with whatever is actually concerning the patients.
So patients either have to put their foot down and say "NO, that's not why i'm here" and be labeled a "problem patient" and be treated like petulant children.(and yeah, they do actually label you as one..i've seen notations in my file) or they have to just sit back and enjoy the roller coaster ride and hope the doctors get around to addressing the issue of actual concern.
I never did like roller coasters....
~Mistee