The Beginning of my AVM Discovery

First things first. This is MY story about the AVM (Arteriovenous Malformation) that was in MY brain. Everyone is different and makes different choices based on personal situations. The only advice I will give is to do your research and find good doctors for rare conditions. Find a team that you know will take care of you. ...and I think CT scans should be done more often when people have headaches or other weird things going on. There. That's my only advice.

My goal in sharing my story is to help someone else. Before my experience, I knew very little about AVMs. This last year I have learned a lot about my brain, having brain surgery, staying in ICUs, and the power of support. I'm also hoping this will also help me through the healing process. And let me tell you...it is a process.

"Migraines"

I have had what I called migraine headaches for as long as I can remember. I was lucky and only had about 2-4 a year. They always started the same. A flashing vision or "glare" on the right side of my vision field. It was disorienting. Sometimes it looked like fan blades circling out of the corner of my eye. I also would sometimes have a difficult time talking and thinking of the words I wanted to say. The weirdest side effect was that my left nostril would feel dry and hurt just a little. When I was younger, this aura lasted about 30 minutes and then went away.

As I got older, this visual aura was sometimes followed by an immensely painful headache. Always behind my left eye or in the middle of the left side of my head. Sometimes medicine helped. Falling asleep usually was the best thing I could do. When I was pregnant with my second daughter, I had a "migraine headache" that lasted two days. I was afraid to take medicine because I was pregnant. I finally asked by doctor to prescribe me something safe to take and it went away.

How did I know I was getting a headache?

There were times I would get the aura/headache right after being exposed to a bright light. One time, in college, I was pulling into a dark parking garage. Another car came up on the right and the lights shined right in my eyes. Bam! An aura followed after about two minutes.

I think hormones had some effect. This might explain why I had such a bad headache when I was pregnant.

Sometimes I swear I could get one by thinking about it too much. Maybe stress?

January 2024

I remember in January bragging to someone that I hadn't had a migraine headache in a long time. I was feeling pretty lucky. We went on a trip to Argentina and it was wonderful. The plane ride was long and I remember thinking I should get up and move to help my blood circulate. I did get Covid right after our return and had an allergic reaction (swelling) to the medication they gave me.

February 2024

I had about one headache a week in February. I figured it was the weather and/or stress. Maybe it was the long plane ride or getting sick with Covid. Maybe it was the red wine I drank in Argentina...

March 1, 2024

I had a headache around lunch time. I canceled evening plans that I had with a friend and went to bed at my usual time. My daughter Marlo was with me because we wanted to have a "sleepover".

I remember being in the bathroom with her in the middle of the night. I remember being sick. I think the pain was so bad that I can't remember it. My husband thought I had a virus. Marlo suggested that we go to the emergency room.

I remember my husband driving and me giving him directions on where the emergency room entrance was. I remember sitting in a chair while my husband talked to the man at the front desk. The waiting room was empty. The man brought my a bag in case I got sick again. I used it.

The next thing I remember is them wheeling me onto a helicopter. I knew there was bleeding in my brain. They had done a CT scan and decided I needed to go to a different hospital with a neuro unit. We were very scared and I think in shock.

The helicopter was loud and smelled like jet fuel. I was mad. I remember telling the young pilot and EMT that I hated helicopters and was not happy. When he said it would be a good view, I told him I would not look out the window. When we took off, the cool air felt good. The sun was starting to rise and the sky was beautiful. I have often thought that pretty sunrises (usually seen on my way to work) were my mom's way of saying hello from heaven. She knew I needed her that morning.

I don't remember anything else until about a week later....