I had an attempted embolization done 2 years ago. They did one round of inserting the onyx glue. When this went wrong, we proceeded with 3 rounds of gamma knife. This led to half my brain having edema.
I am now researching if onyx glue could cause edema and some studies have shown that yes it can! As well as seizures.
My neurosurgeon said he can’t do anything about the swelling and there is no cure. And there’s no reason for me to see neurosurgery again.
After this appointment… I started thinking, why is my swelling so bad and not getting any better years later as neuros have promised? All this time the neuros have told me it’s cause of gamma knife. REPEATEDLY. So that was instilled into my head. Then a light bulb went off and I thought hey well mri’s always show this shiny black matter in the middle of the edema (the onyx glue)… what if it’s irritating my brain further?! And what if that’s the reason my swelling isn’t getting better? I’m not sure why this never came across their minds or maybe they just didn’t want to deal with my situation.
Even though I was able to do my research, I don’t think there will ever be a success story for me. I will forever have glue in my brain, and it could potentially be the reason why I have so much edema and swelling. Probably will have seizures forever too. Seems like there’s no solution.
Just wanted to share because I feel really let down.