Hi. One highly respected neurosurgeon recommends gamma knife to treat my 11 year old son's avm. Another highly respected neurosurgeon says that gamma knife would be terrible for the developing brain and is not a good treatment for a child. Do any of you have any experience or information about treating a child's avm with gamma knife. I would much rather use it if possible vs a craniotomy.
My daughter was treated with Proton Beam, which I think is similar to Gamma knife, when she was 11, she is now almost 14 and her AVM is almost gone. She is doing well and had very few side effects, but I do not know if she is the exception or not.
My son had all 3 treatments, embo, crani, and gk. He is fine today and this avm was declared obliterated last year. He only needed one treatment, he has experienced no side effects that we can tell. Good luck either way.
My son was treated through Barrow Neurological. They went over all the risk factors. They didn't feel they could safely remove all it through surgery. That we had the choice to leave it alone, but they felt that GK would be in his best interests.I’m in Northern California now having those same discussions with two respected doctors. Happy to share experiences if you’d like to talk. I will message you with my contact information.
It really depends on the location of the AVM as to what the better treatment option is. Radiation will take 2 to 5 years to work whereas surgery would think would be faster. My son's AVM is deep-brain and could not be surgically treated. Surgery would have required cutting through half his brain and if he'd started to bleed they wouldn't have been able to stop it. Although radiation is not a great option because of the risk of possible side-effects it does have a very high success rate. Side-effects are individual to each person depending on where the radiation would be aimed and many have not side-effects. I'm surprised at the differing opinions you're getting on this though. I would be getting a third opinion and asking that your son's case be work-shopped. Not sure where you are located but in Australia there is a monthly meeting of groups of Neurologists and Neurosurgeons and complex cases are tabled for group discussion. This may lead on to a case be tabled nationally or even at international conferences like my son's was. I hope you get some definitive answers soon.
Hi! My nine year old suffered a massive brain bleed on Jan 30th when he was 8 years old. They discovered an AVM very deep in his brain and said they could not operate, nor could they reach it by embolization. They suggested Gamma Knife as our only option and told us he currently has a 30% chance of re-bleed, all factors included. We are now desperately trying to find someone to perform the Gamma Knife and having a difficult time. Without going into too much detail, his case is apparently rare & complex and nobody wants to touch it. Can you please tell me what you ended up doing??? Thanks so much!
You haven't said where you are located Chickies11.
Sorry, New Jersey