Monday, 1 July 2013

My Brain AVM: Proud to Be Canadian, 2013

Happy Canada Day!

I think that enough readers have joined us since last year that I'm not going to feel badly about this annual reblog of the first post that I wrote for a Canada Day, about my brain AVM and Canada's health care system. I'm proud of our universal health care system, despite its imperfections, and I don't mind repeating that.

I feel very badly feel American friends who haven't been able to afford care that they've needed, or whose insurance limited how much physio they could receive after a stroke like mine. I know that many people really struggle.

I know that people in Canada are struggling as well to get what they need in their health care system, even though they shouldn't have to. Elizabeth McClung opened my eyes to that. I miss you, Beth.

In a perfect world, every patient would get the care that I did. Thanks to dedicated staff in Canada's health care system, I am both a brain AVM *and* a stroke survivor. I'm a very lucky person, to be where I am right now.


My Brain AVM Story

I sometimes feel like I spend a lot of time defending Canada’s health care system. I know that it’s not perfect. I can tell some stories of some real atrocities that have happened to people I love, in fact.

But it was there for my mother, right from the time that she was diagnosed with cancer to her death. She was treated, as far as we as we could tell, to the best of the doctors' ability, with respect and dignity. We were treated with respect by hospital staff as well.

The medical system has always been there for me as well, in spades. Like I said, I've been very fortunate.

I had my first stroke in the middle of a job interview in British Columbia. I was twenty-two at the time. I was rocking that interview. They wanted a coordinator for a symposium on youth violence, and I could tell that they liked me (I ended up getting the job, actually).

But it was not to be, because in the middle of the interview I got an incredible headache that came on like a train – fast and forceful. “So this is a migraine,” I thought, faltering over my words. I had to stop and explain what was happening. Someone on the interviewing panel gave me some Tylenol, and I managed to finish the interview, but at the end of it they wouldn’t let me go until I’d promised to go to straight to the doctor.

I didn’t protest. I could feel my neck getting stiff. “So this is meningitis,” I thought.

I’d only been in British Columbia for a couple of months. I’d just put my application for BC health insurance in the mail that morning. I walked into the town health clinic, put my Ontario health card down in front of a receptionist who didn’t know me from Adam, and said, “I think I have meningitis.”

Five minutes later, I was in a doctor’s office.

Five hours later, after an ambulance ride to the nearest city, I was checked into the nearest hospital. I’d had a CT scan and a lumbar puncture and I was scheduled to be transferred to a larger, more specialized hospital in the morning.

Five days later, I’d had an angiogram and I’d had been diagnosed with a brain arteriovenous malformation, or brain AVM (check the Glossary on the About Me page for definitions of unfamiliar terms). A consult had been set up for me in a brain AVM clinic in a Toronto hospital, and I was cleared to fly home to Ontario.

Five months later, I’d been seen in the brain AVM clinic in Toronto Western Hospital twice.  The doctors had decided on a course of treatment based on another angiogram: embolization to reduce the size of the brain AVM, and then a craniotomy. The surgery hadn’t gone as well as they’d hoped: A small segment of brain AVM could not be treated. Later, I  had a stroke that significantly compromised my left side. My treatment team was arranging in-patient rehabilitation at Penetanguishene General Hospital, a facility closer to home, so that my father wouldn’t have to do so much driving. They were just waiting for seizures to stabilize before they sent me.

The rehabilitation hospital kept me for as long as they could, and then sent me to Ottawa Rehabilitation Centre, which kept me for as long as they could. My in-patient rehab was seven months in total.

When It All Comes Down to Money

There’s a chance that I wouldn’t be here if the medical system hadn’t been here to support me the way it had. My family would not have been able to afford my brain AVM surgeries, let alone my aftercare and rehabilitation, if we’d lived in country without universal health care. As I said, the system isn’t perfect...and I really feel for people that have had a bad outcome because they've been put on a waiting list or because they've had to sit in an ER too long.  That absolutely shouldn't happen.

But I can’t imagine living in a country where people sometimes go without treatments that they need simply because they can't afford it.

It makes me grateful to be Canadian...and proud.

More about the AVM Clinic at Toronto Western Hospital.

Dr. Michael Tymianski did my craniotomy.

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