Pathology Report In!

I got a voicemail from my neurosurgeon this morning with the results (finally!) of the pathology report.... the verdict: a benign hemangioblastoma.

Non-medical translation? HAPPY DANCE.

Although he was met with a lot of disagreement throughout, this is the diagnosis my neurosurgeon has been sticking with since the initial MRI showed a "something" back in March. The vast majority of the colleagues he consulted with thought it was a pilocytic astrocystoma, but alas, it turns out he's a freakin' genius and was right the whole time. Given the substantial cyst growth as of November, he said he wasn't comfortable calling it "benign" anymore and had changed his language to "low grade." Even though, throughout this entire thing, he's been 99% sure it was benign, you can imagine how much that little 1% was nagging at me over the past almost-2-months. I'm incredibly, incredibly, incredibly relieved to have that portion of it confirmed and, quite simply, just to know what the hell had been in my brain this entire time (it's very strange to know that there's something growing in your head, but no one actually knows what it is).

Hemangioblastomas are often associated with a genetic disorder called Von Hippel-Lindau Syndrome, but at this point, there's not much of any concern that I have that (the classic presentation is multiple hemangioblastomas -- in the brain, kidneys, liver, and eyes particularly) and it would be exceedingly rare for me to suddenly develop my first tumor (and to not have any others) when I'm already in my mid-20s. We talked pretty extensively about doing genetic testing for this over the summer, but ultimately decided that I just don't have enough of the other symptoms to justify the time and cost associated with those tests. We'll follow it closely, of course, but at this point it just looks like I'm one of those lucky folks who spontaneously grew something in her (apparently) pissed off cerebellum. There's a fairly small chance of recurrence, so other than MRIs every 3 months for the next year (and then I think something like every 3 or 5 years after that), this should be essentially "cured" at this point. Can I get a "fuck yeah"?

In other news, the excitement of that phone call this morning and my state of feeling relatively good physically meant that I had grand plans to head to the neurosurgery clinic to get my sutures out, then a trip to the store with my dad, then to Jamba Juice for the smoothie I've been craving for days. Instead (seriously, I don't know what I did to piss off the universe as a child), the nagging sinus-y headache I've had for the last 24 hours very suddenly turned into, hands down, the worst headache I've ever had in my entire life -- throwing up, chills, the works. It freaked me out something fierce (as they, of course, say to be extremely aware of any major changes in head pain in general, but especially right after brain surgery), but luckily it happened literally about 30 minutes before we were due at the neuro clinic. So we headed up there, I got my stitches out (incision looks fabulous -- no infection whatsoever, should heal nice and flat), and then talked to my surgeon's nurse about the headache, which was about a 9 on the pain scale at that point -- AFTER having taken my prescription pain meds this morning. She didn't seem overly concerned, but put me on a new med plan of a double dose of motrin plus two extra strength tylenol, together, every 8 hours. I asked if there was any concern about increased swelling with a headache like this and she said not really, but asked me when I had gone off of my steroids when I got home last week. She seemed a bit alarmed to discover that I wasn't sent home with steroids (and to my knowledge, didn't receive them -- at least not by mouth -- when I was on the neuro acute care floor, and possibly not even while I was in ICU), so she told me to do this motrin/tylenol combo for the rest of the day and night and call her with an update ASAP. I came home, basically collapsed on the couch for about 2 1/2 hours. The headache is certainly still present, but once the meds kicked in and I slept for a bit, I at least don't feel like I'm about to keel over and die now (not even kidding). If it's not totally gone by time I call tomorrow, it sounds like they might put me on a small dose of steroids for a couple days. It's like recovering from brain surgery is complicated or something.....

Still working on the epic "detail" posts... I swear they'll be up someday. But for now, headache from the depths of hell aside, YAY for all things benign!