Gamma Knife scheduled for 6/13/17 Any advice?
14 year old niece. Proton? Gamma?
Thanks Hanne, this is really helpful - even though I just had my "X-Knife" SRS treatment, I now know what has been done.
It's great for you to have shared your knowledge and given everyone a pretty clear picture of what really is going on with the physics of the procedure. I had been wondering if the beams carried on through my head or not - now I know that they Did!!
Philip: Thank you :)
The discussion was a result from my own inquisitiveness and questions from other members in here about the topic :)
I am glad the GN went well for you and that you could combine it with your seizures!
Hope you are healing well!
Best wishes and Positive thoughts, from your friend Hanne xxx
i left a long message here but im not sure it posted. lol. this site gives me trouble. it breezes everywhere else. but like i said im 35. everything was fine a few months ago but since ive lost everything i could imagine. my truck my job my life as i knew it. Ive had screws placed. ive had the angiogram and last week they did 65% of the embolization. I need to get the rest done in the next 8 weeks and then i start the proton therapy with dr thornton. my drs have alll been helpful. ive had alot of trouble with my insurance company but that seems like we all deal with that. they wilkl lose. i was given 2 years to live without treatment. The proton info has been asuring. no matter how often i hear it it asuring. they are going to fix me and i will be amazing. thank you so much for your time. my grandparents are here to c mee and i must go take care
Why wouldn’t people just choose proton radiation over photon? I’m considering proton radiation for my son but I have not found enough data to feel 100% sure. Anyone out there had proton radiation?
thanks for taking the time to put that out there
It should be noted that brand names are not the only difference between the Stereostatic Radiosurgery options. In each case the radiation is delivered into the body in a slightly different way. I’m just going to do a comparison between two forms - Linac - delivers a lower dose to the AVM with more radiation impact on surrounding healthy tissue. In my research this is a better option for diffuse AVMs. Gamma Knife - hits the target harder with the precision of a scalpel and little to no impact on surrounding healthy tissue. Better for small, compact AVMs. Proton on the other hand is recommended for larger AVMs. Neutron will be coming in approx. 10 years.
When looking at radiation learn about the structure of your AVM, do your research, talk to doctors from various facilities most especially those at the forefront of research ie. University Hospitals, do not expect your specialist to know the benefits of other systems or even be prepared to acknowledge that different systems will have different outcomes, talk to the scientists that create these radiation systems and be prepared to travel to the system that will give you the best outcome.
I have found hospitals, specialists and scientists more than willing to discuss my son’s case and explore the options including Robert Spetzler (now retired) who created the operability grading scale. All it cost me was the time of uploading his scans to their imaging software or posting the scans to the facilities.
My advice comes from experience, the wrong treatment being used initially for my son, more than a year of not taking what I was being told as fact and learning that I was right, finding the best treatment with the best outcome though that won’t be as good as it should have been, complaints to the health commission about those who have been involved, berating my son’s team that they need to become better informed about the options that are out there and a son who is facing more radiation in the next month that has a reasonable chance of completely paralysing his left side when this risk should NEVER have been on the table!
Linac was the first treatment which has changed his 1:5-10million per year AVM into a landmark world-first case. This second treatment will be (and it should have been the only option ever on the table) Gamma Knife.