Hi! My 15 year old nephew is having proton beam radiation this Friday, was wondering if anyone here has had the proton beam done, and how it was afterwards. My family is very nervous for him and I’m curious to hear from others on this. I’ve seen a lot about the gamma knife and surgery. He cannot have either. His AVM is too close to his optical nerve. Thank you!
Hi Julie. I did a search on the word Proton Beam for you…
http://www.avmsurvivors.org/main/search/search?q=proton+beam
Hi Julie…I also had Proton Beam Radiation because my AVM was too fair inside my brain. At first, they put in beads to mark the spot. To be honest, that was not much fun…but truley not that bad. I think it was a week later that I went to have the Radiation. That was easy, but you feel like you are on a spaceship…It was over and done with in a very sort period of time…maybe a half an hour and then it’s over. It does not hurt at all having the radiation. If you have any other questions, please don’t hesitate to ask!
Yes! My nephew is also seeing Dr. Chapman. He had the 3 beads implanted this past Friday. Radiation next Friday. His is really close to his optical nerve. Were you sick feeling after the radiation? We are so worried about him. We really don’t know what to expect…there’s a list of “possibilites” a mile long.
Julie: I can relate to your worries what to expect after Proton Beam treatment!
Each avm is unique and therefore no clear answers can be given. That is a challenge we face but not doing anything is also a challenge…
My avm cannot be treated by embo, gamma or surgery, so I am also hopefully a candidate for Proton beam treatment. Since we do not have a Proton machine in Norway I will get the treatment abroad, most likely Sweden but possibly in Switzerland or Boston/USA (?)
My case is very complicated (you can read why in my profile) I will need general anaesthetic because of my seizures/hyperekplexia.
I have been waiting a long time for a date for treatment but recently found out that they most likely can not do the treatment in Sweden after all!
This is because they use a machine where you have to be able to sit still + bite a tailored plate during the beaming.
The National hospital in Norway still want me to travel all the way there and back before they will/can send my pics to a different country!
I am waiting for the exact date for “treatment” any day…
…been told to expect it to happen this autumn…
If you are interested in the difference between photon(gamma) and proton radiation. I have tried to explain in in this discussion http://www.avmsurvivors.org/forum/topics/photons-vs-protons-whats-the
It would be very interesting to hear your nephew´s experience with Proton Beam treatment, if you feel like sharing your thoughts?
Wishing your family all the best!
Positive thoughts from Hanne xxx
Thanks for the add Hanne~ and for sharing your story with me. Up until now, my nephew has been a typical teenager. I just hope nothing drastically changes after the proton beam is done. He was fitted for the head brace/ mouth plate this past Friday. I hope they can get you in soon for treatment, I will keep you posted on my nephew…thank you! Take care!