My 12 year old daughter is being treated at Johns Hopkins for AVM that was diagnosed in August after a seizure. No bleed. She has had one other seizure since but still no bleed. She is on Keppra. We live in Florida and travel back and forth. The doctors are discussing whether to do one time Linac or more than one. Because the AVM is sitting on the motor strip part of her brain, they are being conservative. All we want is what any parent would and thats for her to resume her normal active life. Anyone know of difficulties or side effects after Linac? Anyone been treated at Johns Hopkins? This has been the scariest thing I’ve ever had to deal with and my baby girl as well. Thanks for any advice ahead of time…
I had to go look up Linac since I’ve not seen that before, but it just stands for linear accelerator, which is the basic machine used to generate all (I’m guessing here) proton beam radiation, cyberknife, gamma knife, etc type radio-therapies. If they used one of these other terms that your daughter will be treated with and you post it, more people here will likely know more details. Here’s one link: http://www.irsa.org/avms.html
My understanding is the goal of any of these radiations is to shoot pinpoint doses of radiation into the AVM from different angles, so there is little or no damage to ‘good brain’ that the radiation goes through, but cumulative effects where the AVM is helps obliterate it.
If they do multiple treatments, my guess is they will be some time apart, maybe 1-6 months.
I can understand the anguish you feel; our son had two brain surgeries to remove hot spots in his brain that were triggering seizures when he was 19. Watching him go into surgery was the hardest thing I’ve ever had to do… (He did fine and is seizure free 4 years so far).
If you haven’t already, I would encourage you to involve your daughter in these decisions (guiding her of course). A lot of this will be over her head, but hopefully the DRs will explain things at a level she can understand. We did that with our son and it really helped him mature. He made all good decisions, though we discouraged him from doing this surgery at age 15 like he wanted to as we still had some more meds the DRs wanted to try.
At the time, our son was on an epilepsy foundation website where others had posted stories. I just looked and they have revamped their site and I couldn’t find the story section. I did find a section for teenagers with epilepsy, which might be helpful (with a section for young girls) at http://www.epilepsyfoundation.org/living/children/teens/weigirls.cfm
My best wishes to you and your daughter.
Hi there! Thanks for the reply. Berkeley will have her first treatment on December 2nd. No embolizations. I am hoping only one will be needed but they will assess at 1 year mark. She has no deficits at this time. Her AVM sits on the posterior portion of her left frontal lobe. Motor strip area. She has had two seizures and is on Keppra. This has been Very nerve racking but now that we are settled with doctors, feeling a bit settled. Thank you for your knowledge.
Jason Eppert said:
I had radiosurgery and was told that it could only be done every two years because of the high amount of radiation used and the time it takes for the avm to shrink after treatments. Also my avm is located in my right upper parital lobe right next to my motor strip and I had three embolazations and lost control of some muscles in my lower left leg. They only filled half of it because they felt any more would cause more loss. Has your daughter had embolazations or problems moving any muscles? Any more questions feel free to ask…Good luck. Jason