Friday, May 9, 2008

"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."

4 comments:

Anonymous said...

I enjoyed your writing. You should update with how you are doing now. AVMs suck. Mine is not in my brain but against my spine. Well I hope you are doing better and have your hair back.

ParmaChameleon said...

I had Gamma Knife three weeks ago on an AVM in my right front lobe. A little patch of my hair fell out a few days ago. It all came out in the shower and I didn't notice until after I dried it. Luckily (so far) I can cover it up by parting it the right way. Why can't the docs just be straight about this crap? What else is going to happen? If my arm falls off or some shit like that then heads will roll.

Anonymous said...

Hi

I have spinal avm, it is like 14 in a million. I follow the 3 p plan-patient, positive and presistence.

Chui HL

Anonymous said...

Hi guys,

I had the Gamma Knife in Feb 18th 2011... and I already have a big patch of hair loss...

Does someone knows how long does it takes to the hair to get back (and if it will get back)...

Thanks