Why Yes, I DO Have Radioactive Blood

It's been five months since I was diagnosed with an arterio-venous malformation in the brain. Since then my life has been a crash course in neurology…gamma knife, embolization, craniotomy, occlusion, obliteration, Spetzler grade, linear accelerator, nidus, intracranial…these words roll off my tongue as easily as I used to say, "A pint of Guinness, please!" Words that, sadly, I am no longer allowed to say. It's been 3 and a half months since I had gamma knife radiosurgery on my brain.

Before all of this happened (well, at least before I knew it had happened--I guess the AVM was there all my life--thanks mom) I could not keep a cell phone for more than a month before it was completely useless. As soon as it came in contact with my head I couldn't get a signal to save my life. I always suspected it was a cause and effect relationship, and that the proximity to my head was actually causing the cell phone dysfunction. Interestingly, I no longer have this problem, and secretly credit the radiation. Of course the neurosurgeon says that's impossible, and that I am neither radioactive nor in possession of any new and mysterious superpowers. I don't know why they are always trying to take away what little I still have.

So now I am able to chat away like everyone else, disconnected from my environment, cell phone glued to my hand…but I still haven't found anyone who wants to debate the virtues of proton beam treatment, or meet over a pint of Diet Coke.

"Uncommon" Complications & Gamma Knife

Britney's such a sweetheart, shaving her head in a show of solidarity for me!

When I was a teenager, the girls used to say, "That's just common" as a put-down. I liked to think of myself as uncommon then, and my intuition is proving correct. Localized hair loss is listed as an "uncommon complication" of gamma knife treatment for "superficial AVMs." At first when I read this I was like, 'superficial AVMs?' But that was just me being common, as they say. "Superficial" in the context of AVMs mean close to the surface of the brain. I really thought some completely callous neurosurgeon was writing this stuff, implying that cerebral AVMs were merely frivolous nuisances only hypochondriacs would seek treatment for.

Well, my AVM is superficial, and so am I. I am superficial, but uncommon. A perfect rectangle of my hair fell out over the area of my brain that was treated with gamma knife. It was about 2 weeks after the procedure, and I was looking in the mirror. All of a sudden, and all at once, it just let go, and fell out. My scalp was so bald, it didn't really feel like skin. My rage was all consuming. The part of my personality that tends to be on the base side had been whispering, 'at least you still have your hair' ever since I opted against the craniotomy. Now I was--yet again--a statistical anomaly. Hair means a lot to a woman. I called my dad, crying and wailed, "why couldn't my pubes have fallen out instead!?" through the sobs. He was laughing too hard to reply, but I was completely serious.

The worst part wasn't the hair loss, it was the feeling that again I was among the unlucky ones. That I was that 1:100,000. That's a bad feeling when you are dealing with AMV statistics. If I had expected the hair to fall out, I could have handled it, no problem. For anyone going through the same thing, hair loss seems to be a lot more common than we are led to believe. Don't worry, it really will grow back. I already have fuzz. If you need to rant, we already have something "in common."