I saw the surgeon for my consult today. We sat down in the conference room and pulled up my last MRI on the huge monitor attached to the wall.
He flips through my MRI images, points to this tumor and tells me that this is the absolute worst location for a pituitary tumor; midline. If I have it operated on I have a 50% chance of losing all pituitary function, including ADH (antidiuretic hormone).
That'd mean my body would be unable to concentrate my urine and I'd be dependent on medication for the rest of my life, along with other medications to replace the rest of the hormones I'd lack for (I already am missing most of them). I happen to know a few people with DI and it truly is a horror-story disease. Insurance companies don't want to pay for the medications because it is so expensive, medications don't work all that well and it just haunts your day, all day - every day. I've read quite a bit about it, but none of it describes the daily battles my friends go through or the games insurance companies play to not pay for the medication. Ugh.
He tried to blame my 2-1/2 year headache on something neurological or optical, the typical shuffling off of the problem to another specialty or doctor to deal with. But I've been to the top of the food chain for specialists in Southern California and I called him on it. He supposed that I may have a small bleed off of the tumor area that is irritating my optic nerve (left eye) and research shows that even the smallest of pituitary tumors can cause incredible headaches. Size doesn't matter, for some reason the excess hormones they produce triggers intracranial pressure. The left eye problem leaves me unable to drive after dark and the constant headache is debilitating, fentanyl & morphine or not.
He recommended that I wait until things got worse, bad enough that 50% was a better choice.
I'm not sure if I want to know what is worse than wracked with pain, chronically bedridden, unable to keep up with just the dishes, properly care for my kids, or - you know - work in my profession & support myself.
Can this be any more of a nightmare????
He's supposed to call my specialist and discuss our meeting with him. And for what it is worth, he has been following my case for over a year through my specialist - so my MRIs and condition aren't new news to him and he's had plenty of time to review the films.
Maybe I am at a point where I am so invested and depressed that all I hear in regards to my case are the negatives, and perhaps my specialist will email me that I am on my way to surgery? Who knows. I don't know, but when I find out - I'll post about it.