Years ago when i was in high school i had my first migraine with left vision aura. But i didn’t pay much attention to it back then. My migraines, which had always been a part of my life, started to feel different. The vision auras lasted longer and my headaches were unbearable.
Now i am 21 years old. After countless doctor visits, scans, and frustrating moments of not being taken seriously, I finally got my answer: a brain AVM in my right parieto-occipital region. The words felt heavy. I had a big decision to make. I feel lucky they found it before it could rupture. The doctors said there is a high chance of losing my left-side vision through the procedure.
Now, I’m preparing for Gamma Knife Radiosurgery, and I won’t lie—I’m scared. Not of the procedure itself, but of what comes after. The waiting. The unknowns. The possibility of losing my left-side vision and the fear of what will change. I am afraid if i really did the right choice to accept the treatment. I am scared of vision loss and i am being anxious about it since.
I don’t have all the answers, but I know I don’t want to go through this alone. So I’m here, hoping to connect with others who understand what it’s like to live with an AVM—to share, to listen, and to figure out this journey together.
If you’ve gone through this, I’d love to hear your experience. What helped you get through the uncertainty? What about the process? And most of all—how did you learn to trust that you made the right choice? Does anyone have experience with Gamma Knife Radiosurgery?
Hi Reni, and welcome. I hope we are able to help you out some. I discovered I had an AVM in May of 2016 when it bleed, left temporal was the location. I spent a few days in the hospital and then sent home to recover. After a couple MRI, a couple CTs and two angios, I had a choice. Gamma Knife or craniotomy, my AVM was on the inner side of the lobe and accessing it would be difficult and almost certainly result in several deficits. I chose Gamma Knife based on all the information I had available. I had the procedure in November of 2016 and in February 2019 an angio confirmed obliteration.
I was really fearful of a second bleed after the procedure, and I think it is something we all share. I can tell you being scared is completely normal, and I always have said that to be at peace with my decisions was my goal. To know if it was the correct one was often sometime down the road, particularly associated to radiosurgery due to that lag time. I had the procedure on a Thursday morning and went home that afternoon, Friday was a National holiday (Remembrance Day) and I was back to work on Monday.
Around the 6 month mark I had some swelling, which is not that uncommon, however did not need more the over the counter medicine. I went though a period of ice pick head aches, scared the day lights out of me at the first but found it is not uncommon. They disappeared and are a distant memory now.
I currently am on Keppra, as I had a seizure in January 2023 but have not had recurrence however the temporal is well known for seizure activity. I am currently sitting in an airport waiting for the next flight but can tell you, for me it was the right decision. We are all so very different but I wanted to avoid another bleed. My advice is to do the research, and be comfortable with you care providers. I had 100 % trust in mine and it made things a lot easier. Calling my flight! Ask any questions you wish, there are a bunch of us here who have had gamma and similar. Take Care, John.