Has anyone here done Cyberknife radiation therapy on a large AVM (Grade 4 - right frontal lobe)? So that the radiation had to be done in several sections and not all at once? Our Neurologist said that radiation usually works best on smaller, less involved AVMs but that doing it in sections is a potential option. Thoughts?
Welcome to our group. I had Gamma Knife, single dose, for a small AVM. A number of people here have bad cyber knife so I hope some will weigh in over the next couple of days. Have you received other opinions, or other options to consider? My best wishes to you and your son, take care. John.
Welcome to the group JennC, I haven’t had Cyberknife. But my neurologist also thinks radiation works best on small AVMs. He said I would need at least 3 embolisations first and even then it would be risky due to location (I have a grade 5 cerebellar AVM).
Hi, welcome. I have just (last week) undergone Gamma Knife treatment for a large (4cm), Grade 4 AVM, Parietal lobe. They thought I may need two sessions but managed to do it in one session. However, I was in the Gamma machine for 1 hour 40 mins. During which time slight variations to position were made. I was told this was in the upper limits but still within the limit.
Do you know why they are recommending Cyber instead of Gamma?
I have not felt good since my treatment. Head pain and parts of my head are still numb. However, I was not feeling good prior to my treatment (lots of stabbing pains and a crawling feelings in the area of my AVM).
Wish your son the very best x
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I think cyber is regularly recommended for young people in preference to gamma. I think it delivers less radiation overall / less risk over time from high exposure to radiation. So it is preferable for someone who is very much at the start of life than those of us who (over our remaining time) have less time left to accumulate a need for x-rays etc.
Oh ok, I understand.
Thanks for the explanation.
Best wishes
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I’m so glad to hear from someone who has been through this! We don’t specifically know what they are going to recommend yet (cyber vs gamma) as we are seeing the radiation oncologist soon. My son has a grade 4 AVM in his left frontal lobe and we are basically being told that his only real option for treatment at this point is radiation treatment.