Hanne, Are you kidding me? You managed the task very well. This is a much needed post to help eliminate confusion on all this radiation stuff. It is confusing and there are options that each AVMer should understand to make an informed decision.
I’m no expert on Proton-beams because it was never expressed to me at the time as an option by the 4 Neurosurgeons I interviewed, however one of them said out of the blue that he would not recommend it. Why he said that? I have know idea, I never thought much about it afterwards, but the way you explain it, it sounds like it could be a good option for some.
Thank you Brett
I agree, there is a lot of confusion around this topic and I also have the impression that neurosurgeons have different views regarding proton vs photon treatment.
The reason I started to do some research on my own was because I was told there was no treatment options at all for my AVM and also because I have had questions about this subject from other avmsurviors.
The reason I am not a candidate for stereotactic radiation (X-rays; gamma knife, cyber knife) is due to the fact that my AVM is too large, with too many feeders in a very eloquent area (motor/sensory).
This is the explanation I got from the neuroradiologist: "They can not do fractionated stereotactic radiation because there are so many feeders to different parts of my AVM that even if they managed to block some of them they would not manage to block them all in one session and therefore my avm will continue as before.
If they were going to radiate the whole AVM in one session, the radiation would be too high and I was told that I would become 100% permanently paralyzed because there would always be some radiation adjacent to the AVM and healthy functional tissue would be damaged. They referred to previous experience with similar AVM as mine, they simply refuse to do it."
That is the overall reason why they can not treat large AVM with stereotactic radiation (x-rays), there will always be some low-dose radiation as well but in small AVM´s the dose is more tolerable.
Since my AVM can not be operated on by surgery or embo I was told that nothing could be done at all.
Anyway, the neurosurgeon have now sent my pictures to a hospital in Sweden where they do Proton treatment. That made me curious, what is the difference?
Today I understand that we are talking about two totally different types of radiation and technics. If I am actually a candidate for Proton treatment I do not know yet, but will soon get an answer, finger crossed…
So, there may still be a hope for treatment, but if the AVM will be obliterated after being beamed with Proton, only time will tell.
HAMIDAH: I am glad you found the information on photon radiation vs proton beam useful.
It has been very clarifying for me as well, writing it.
Having said that, remember each AVM is unique and special and that the neurosurgeon will know which type of radiation that fits best for your son.
Hanne xxx
I am thinking of going for the novalis protocol. Which one of the above is novalis?
Kyle said:
I am thinking of going for the novalis protocol. Which one of the above is novalis?
Kyle: Novalis is stereotactic radiation
Hanne xxx
Robin Konen said:
I just read your explanation of various treatment options. It was very good. When I first started treatment, I was told I would have a series of embolizations followed by gamma.
After the last embo, they said I would get LINAC. No one could explain the difference to me. Thank you so much for your research and for sharing with us.
Robin: When my neurosurgeon mentioned that I might be a candidate for radiation, either gamma or proton, I asked him what is the difference and he could not explain it either.
Knowing the difference today, make me wonder why not?
Since I have a very large AVM I would have wanted to know the pros and cons for both methods before I got the frame on!
Hanne xxx
Thank you so much for explaining all of the options available to us. I really appreciate hearing all the different options, and you enlightened me on alot of knowledge. I will keep you in my thoughts and prayers that the proton therapy is an option for you. take care.
Diane
Thank you Diane
When it comes to the effect of Proton beam therapy. I will give updates as time progress.
That is, IF I am a candidate for the treatment…
Hanne xxx
Just after my gamma knife treatment, I was watching the Science Channel on TV where they were describing what happens when a star explodes, and becomes a super nova. They said it primarily emitted deadly gamma rays!!! That got me to thinking!!!
Dewdo from the other Washington
Thanks for all the information. I appreciate it. I’m so lost and was never told about the different types of radiation so I’m clueless. Worse part is I have no say so in this. He is in the county jail for doing something stupid but hasn’t been charged yet except to say his is compendent and will await his medical treatment before proceeding with his case. He was scheduled for surgery in September 2010 but the jail didn’t get him there. So now it’s grown more and they aren’t sure they can do surgery at all, I feel so helpless.
Latest Update on my Proton Treatment:
Dr Chapman and Dr Loeffler at MGH has reviewed my images in detail and concluded that it will be feasible to treat me under GA. (8 Mars 2013)
...and that they will be pleased to begin organizing my visit as soon as they get it confirmed from the National Hospital in Norway.
Problem was, that this letter never found its way to Norway but Sweden.
That said, I have informed Dr Berg-Johnson about this letter now (3 June 2013) and he sent a renewal of my financial guarantee from the state.
All I can do now is to wait for him to get back from his summer vacation. Also I need the Hospital in Norway to find two nurses to travel with me in case I need acute medication due to my seizures...
So, still waiting, after more than 3 years (!!) for an answer if Proton treatment is a choice for me..
I will keep update when I know more about when or if the Proton treatment actually will happen (?) and the effect it might have on my AVM, as time progress.
I have never forgotten how you welcomed me here to this site! You are always in my thoughts and prayers!
Hanne, I pray ever day that your country will provide you with the support you need. Keep the Faith, Dear Hanne!