Welcome, glad you found us but too bad you were looking! I read your story so far and wow, the journey is the tough part for sure. I can only pass on my experience, I had a bleed that caused my AVM to be discovered, and was out on Dexamethasone for the swelling. It was successful in reducing the swelling. I had one dose of gamma knife 6 months later, had a little swelling at 6 months, some ice pick head aches but did not need medication. My AVM was obliterated, was a grade 2, confirmed about 28 months afterwards. I have had one seizure since, that was this year.
I made all my decisions based on risk, and a main driver not wanting to have another bleed. That is what scared me more than anything. I know swelling is caused by the radiation, and many of us gamma folks experience it to various degrees, many need medication. I am not a dr by any stretch of the imagination, but the amount of radiation they need to apply for success to yours in multiple doses would be well beyond what I received, no comparison. Did they predict this type of reaction? We have had a couple members here experience radiation necrosis. If you hit the magnifying glass on and query same, you should get some hits and see what steps people took to limit the effects. We have a member who pops in from time to time amcoffey who had a heck of a battle with swelling from cyber knife. I believe she had success in a variety of alternative treatments such as hyperbolic chamber. I might be mixing up some forums…
There are several chats in that respect, I haven’t seen here here for a bit but you can message, she was always very helpful to all. I wish I could be of greater assistance/information, Take Care, John.