Has anyone delt with brain swelling due to radiation necrosis for over a year? If so, what are you using to treat it and what have the doctors said about it? I had my AVM treated with cyber knife radiation and it has been a year since treatment and I still have brain swelling from the radiation necrosis. They have not been able to get me off the steroids because of this.They suggested Avastin or brain surgery to remove the dead mass. Thanks
Alyssa Coffey
I was given steroids for the swelling. However due to being a 14 year old boy who was already genetically prone to acne / rosacea, I became covered in acne from head to toe, literally. The rosacea i gained at the time, I still have at 37.
My doctor wasnt interested and there was no Internet to ask advice, so i just stopped taking the steroids. I can’t remember if the steroids were for the necrosis or just gamma knife post treatment.
I ended up with necrosis a year later and i wonder if not taking the steroids was a contributing factor to how bad my impairment became. If i could go back id just take them and hide in my room for the year,.
Btw, my dead mass area was never removed and its been 22 years. Were you told why it should be removed?
Also, my AVM grew back from obliteration after 15 years. Now its inoperable and radiation cannot be used.
I didn’t know that AVM’s could grow back? They suggested I get it removed so that the swelling would stop around the dead mass because my body was having a hard time trying to heal that area. I didn’t end up with the BAD swelling and radiation necrosis until about 6 months later even though I was on steroids.
Why is your AVM not treatable now?