Hey Doc, that's not why i'm here!

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....


Hello Mistee

I have a similar situation except mine is the opposite. I had TN symptoms first (didn't know what it was at the time) My opthamologist diagnosed my PTC & got me right into a Neuro, I recognized when my SF was high I would have TN symptoms or was it the TN causing a flare up with my PTC? I tried to talk to the Neuro since it seemed to be connected, but to no avail kept telling me to see an ENT. I finally went to a Neuro closer to my work & finally someone besides my MD & my retired ENT listens. I was on Diamox for my PTC, but caused Kidney stones (every month & 1/2), my insurance won't cover a cranial shunt until I try a Lumbar shunt, still undecided there. I am currently on Hydrochlorathiazide for my PTC less frequency with Kidney Stones, but didn't eliminate. My last MRI (1st one with the new Neuro) he said is Normal, no change in my Pineal Cyst...stop the presses what is a Pineal Cyst I had not idea I even had one, he informs me it is not a tumor & is very small, but I now believe this was the cause of my PTC in the first place. I have a very stressful job & that seems to play into my flare ups, does stress seem to be linked in your symptoms? Sorry to have been so chatty, but you are the 1st person I have come across that has PTC & TN.