In terms of brain AVM treatment, I pretty much hit the jackpot in many ways.
Two Brain AVM Surgeries, But…
Yes, I did go through two surgeries: An embolization to make the brain AVM smaller, and then open-brain surgery to resection the entire thing. And when all of that was over, there was still some AVM that they couldn’t get. But it’s not like it caused any trouble (it really didn’t; the post-surgery bleed that left me with the deficits that I have now happened near the brain AVM, but it wasn’t the AVM itself.) As I talked about in “Finger-Spelling”, initially they debated about going back in to see if they could get the last bit of AVM but, for whatever reason, decided against it.
So, until the summer of 2001, I still had that little bit of a chance of another bleed in my head. There’s a 4-7% chance each year, non-cumulative, that an AVM will bleed, and my chances were in the higher end of the range. Even so, bleeding again given that I’d bled in 1999 was unlikely. That didn’t stop my father from flinching every time he saw me go for the ibuprofen (which was usually to deal with menstrual cramps as opposed to headaches).
I didn’t think that much about the little bit of brain AVM. Maybe I figured that if it was going to bleed, there wasn’t much I could do about it. I think I mostly just forgot it was there.
Until I went back to my neurosurgeon, to hear the results of my one-year follow-up angiogram.
First off, after seeing me walk into the office and seeing how my arm had come along, he said that he was finally comfortable enough to open the bottle of scotch that Dad had given him when I’d left Toronto Western (not right there in the office, of course…presumably the next time he wanted a glass of scotch). He said he’d not wanted to until he saw how everything was going to turn out with my recovery, and that he was very pleased with my progress. It was the first inkling that I’d gotten that he’d maybe felt badly about the way things had turned out after the surgery and that he’d worried about my prognosis, even though it had never occurred to any of us to hold him responsible in any way. Dad had given him the scotch because, as far as we were concerned, he’d saved my life. I’m very grateful for everything that he did for me.
Second, he wanted to discuss some very unexpected results on my angiogram. I wouldn’t need any more treatment – no radiation, no more surgeries – because that little bit of remaining brain AVM had sealed itself off. This wasn’t unheard of, but was fairly rare. I’d have to come back in a couple of years for another follow-up angiogram, but as far as he was concerned I was cured – ready to be discharged from the brain AVM clinic, unless a day came when I felt symptoms coming on again, in which case I should call them immediately.
I didn’t know what to say. I spent a couple of days in shock – I’d not thought about that bit of AVM for so long, but I hadn’t realized how much I’d built myself on “having an AVM” in the last year and a half. The idea that I now had a clean bill of health (well, besides having a weak left side and a seizure disorder) seemed a little strange. It was another redefinition, and I felt like I’d had enough of those over the last little while.
Unfortunately, most of the time we don’t get to choose the times when we have to redefine ourselves. And if there’s anything that this whole experience has taught me, it’s that dealing with a lot of change in a short time is easier when you’re aware of those core things about yourself that you *don’t* redefine, no matter what. The things that really say, “This is who I am.”
I thought I knew who I was before the brain AVM trouble started…and then I had to redefine myself a bunch of times, and I wasn’t sure. But then things got clearer, easier. And if going through all that was what it took to find out who I really am…then it was worth it.
More on the Toronto Western AVM Clinic: