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AVM Survivors Network

AVM radiosurgery treatment option?


#1

Hi all,

Im new here and this will be my first post starting with one question.
-What type of radiosurgery treatment should I choose for my AVM?
-Gamma-knife, CyberKnife, Novalis Tx...?

I did research here on the website and the best answers I found is that the doctors knows better and always ask for second opinion.
Well this didn't help much since in 3 different hospitals I got answers to be treated with 3 different methods.
I assume that offered treatment depend on that what type of machine they have in the hospital.

In the question for example: "Why not Gamma-knife, instead of Novalis?" or vice-versa to the doctors, always end with the answers like: "They are particularity the same, they both use photons..." or "Nobody knows for sure how it works, but it works!"

In one thing the doctors are right, about the photons but in all the other things these machines are very different.
I'm person with professional technology background and education as Master of Laser Engineering and Optoelectronics, believe me this didn't help me much to decide what option should I choose, and Im thinking, if Im confused how the other people who have less knowledge about technology, and the doctors does not have the full info, feels like??
In my research I did found something about how the treatments may react and affect if cancer was treated, but less information about AVM and more less for the specific location, size, etc.

Thanks


#2

A few years ago, a good AVM friend of mine had a discussion about the types of radiation that may be very useful for you.... If you go into Members at the top of the site and type in her name Hanne...then check on her name, she will come up. On the lower left side, you will see your Discussion: Photon vs Proton Radiation...Very useful information. Wishing you the best!


#3

Hi, I had gamma knife surgery on my AVM on 13th November. I don't have experience or knowledge of another or radiotherapy treatments but can give you my opinion on GK. The doctors and radiosurgery professionals were so supportive throughout the day of treatment, it was a weight of worry off my head due to the number of things that had to be done on the day.
The frame fitting and frame removal were the most painful things to get through, but radiosurgery was painless. I ended up having an MRI scan, angiogram and the GK done on the treatment day. MRI and GK are painless, albeit the MRI a bit noisy.
I'm just starting to experience side-effects to the (hair loss around the AVM area) which hopefully is a positive sign that the treatment is on its way to working!
Hannah


#4

http://www.avmsurvivors.org/forum/topics/photons-vs-protons-whats-the


#5

Let me link you to something. In it, this conference of neurosurgeons discuss cyber and gamma knife.

https://www.youtube.com/watch?v=yD_qLF22NuE&feature=youtu.be

"Arteriovenous malformations, strokes, and embolisms are discussed, including diagnosis and treatments by doctor, John Pile-Spellman, M.D., F.A.C.R., Interventional Neuroradiologist with Neurological Surgery, P.C"

The doctors are top notch.


#6

I agree!