Tales from a long term survivor

I thought it might help a lot of you young folks who presently have or recently got rid of an AVM, to have one person’s experience with an AVM bleed and craniotomy that occurred in 1959 when I was 8-9 years old.

It was in my right occipital lobe, and I have had a left homonymous hemianopia since the surgery. Every test I had back then was horribly invasive and painful because scans were not invented yet. I realized afterward that I was different than others, but was never able to figure out why. I used to think of myself as an alien. I knew something was different about my vision, and was told it was a field cut to the left. I never knew it was the same loss of field in both eyes, not just the left eye.

I did not know my brain had bled, or that I was in a coma a little while, and had seizures. No one ever named what I did have; I never had any rehab, and went back to 4th grade bald. No one ever taught me to scan, and I counted steps in an effort to not fall. I did not know they did an exploratory brain surgery, thinking I had a tumor and it was cancer. They removed more brain than they would have today because they thought it was cancer. I never told anyone after I changed to junior high that I had been through brain surgery, and never told them about my vision loss. In those days, as a Catholic, I was told to say only if asked, that I had been operated on for a blood clot. I got no special treatment, and because my last name started with “Ab”, I sat in the first seat right next to the door to the classroom and the clock. Everything, including the teacher and blackboard was to the left, and for me no left world really exists. I was in gym every year getting hit in the face with all kinds of balls I never saw coming. I jumped on a trampoline and fell off balance beams. I once jumped too soon at the pummel horse, falling over the horse, and knocking the wind out of me. I hit a smaller kid who was standing on my left too close to me, when I was playing baseball. I smashed his glasses right on his face with the bat. It was awful.

Even as a teenager after I graduated from high school by just squeaking past failing grades, there was no doctor, eye or other kind of doctor, who knew about hemianopia. They did not know nor ever heard of AVM… I figured all that out myself when the internet became available. I became a paralegal by learning on the job when I was a secretary. I learned a lot by listening to anything I heard when lawyers would talk. I hated school and did not intend to go to college. I did very well at my job, though I was a little slower than others. The difference was I rarely made errors. I used to think I was very dumb, but now know how intelligent I really am.

I hope by writing this here someone will find the hope they need about the future and what it will be like. I want to keep all of you from thinking like I did that I was dumb, clumsy, and an alien. I was none of those, but can still find myself thinking the old way. It took me a long time to get to the place I am today. The place is mostly peaceful, being proud of myself for continuing to fight depression, sadness, alienation, etc. We have each other and we understand what this all feels like.


Thanks for sharing!

Hi Beansy. Thanks for sharing such an inspiring story. I think you're amazing! I was born in the 1970s and began having medical problems in the mid 1980s. When I think back now to my diagnosis and treatment for a related condition then it all seems really basic. Lack of knowledge about brain conditions was inherent and AVMs didn't 'exist'. At least they had CT scans though which showed something abnormal (though they couldn't tell what). I can't even imagine how difficult it must have been in 1959. Best wishes to you now and for the future.