Hi everyone, I’m curious o find out how many of you have had radiosurgery done to treat your AVM and what was your experience like? I made a blog detailing my experience with it as well as what my oncologist told me about its effectiveness. I’m keen to know how yours went and what raiosurgery id you ue cyberknife, Gamma knife or proton therapy?
I had Gamma Knife, and the experience was overall positive. The frame was uncomfortable but tolerable fr sure. I had limited, side effects, some swelling a few months after the fact, but didn’t need a course of steroids. I have a few side lasting effects but think it is from the bleed s. the treatment.
I hose GK due to the location of my AVM, being on the inside of the temporal lobe. Had it been more easily accessible, the choice in all likelihood would have been craniotomy. This would have been to avoid the lag from treatment to obliteration. It came down to weighing the risk between an estimated two year time for success when a second bleed was possible to anticipated side effects in having to “mash through a fair bit of brain” as so eloquently stated by my neuro surgeon.
I have also never heard of the decision to do a craniotomy based on rating from Spetzler-Martin, specifically due to size. There are many factors involved. Craniotomies are often done for 5, often following embolization. There is so many variables. Mine was a 2, 1 for size and 1 for location. Much of what I have read in dealing with radiotherapy is success of complete obliteration diminishes with the larger lesions. I was an ideal candidate based on being small.
I really enjoyed the read, thanks so much! It sure shows how there are no absolutes in these, we are all so different. Even our experts have varying opinions, sure shows the value in us seeking a second opinion if the time allows. Take Care, John.
When you had the Gamma knife done, how was the headframe? Was it painful while you were undergoing the treatment? Was the Gamma knife the only available radiation treatment at the hospital? I’m curious to fin out since most hospitals have different ones and did your doctors provided the treatment as compulsory or an elective one? in my case it was considered elective
The head frame was uncomfortable going on but then held consistent, it was the sound that irritated me more than anything. I git used to it, but was happy when it came off. Gamma knife was the only radiation option available. Treatment was elective. I had the choice of either gamma knife, craniotomy or nothing. Gamma presented the least risk of significant deficits compared to craniotomy, and I wanted to avoid another bleed if at all possible. While it was elective, the gamma option was certainly recommended. Take Care, John.
When I had my head frame put on it wasn’t too bad. But I did have a horrible headache after it had been on for a good while. It was awful at least for me. It must have been on a nerve or something. It had to be on there basically all day. The headache went away completely after the frame came off. They had to plan my radiation treatment. Mine was 5.4 cm. They did 2 rounds 6 months apart. No seizures until the 2nd treatment. It was a week after the 2nd treatment. (I had one that lead to its discovery instead of a bleed.) Unfortunately after the 2 year wait to see if it had made progress shrinking, it had unfortunately grown 2 new feeders, so I had another embolization and radiation treatment. I had 3 embolizations and 3 radiation treatments in all. As of the last angiogram it was still there although a lot smaller. It was discovered in 2012 so I have been very disappointed. But as so many people say on this site, everyone’s AVMs are different and respond differently to treatment. Best of luck to you.
My daughter is 12 and not a candidate for radiotherapy. The drs think her avm is too complex and she would be subjected to more radiation than they would like, for too long of a time.
So radiotherapy is not necessarily for everyone.