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AVM Survivors Network

Trying To Decide

#1

I am 34 years old AVM survivor, I was diagnosed in Feb 2017 it is on the right side of the brain near the stem and optical nerve. It has been two years, I am looking for the best possible treatment. I was told that I should get it treated by gamma knife radiation. I am concerned about its side effects. Do you have any opinion on it?
It will be very helpful.
Thank you

Decision time -Craniotomy or Stereotactic Radiosurgery for unruptured AVM?
#2

Hey @menk01

It’s great to year from you.

Has your doctor recommended only gamma knife? If your AVM is very deep and difficult to get to, gamma knife is often the only option. If the vessels approaching your AVM are quite large then an embolisation might be possible but the vessels need to be big enough to pass a fine tube through without the tube stopping your blood flow during the operation.

The side effects of gamma can be next to nothing or can include zapping tissue that is healthy, as well as the AVM that is being targeted, so there is a risk of zapping a bit of healthy brain as well as the AVM, which I guess could lead to loss of some capability or headaches.

After the op, there seems to be a risk of brain swelling and definitely extreme tiredness. These effects seem to me to be several months after treatment, not like in a week or so, necessarily.

But all of the procedures for fixing an AVM carry risks with them. This is not a risk-free zone, especially near the brainstem.

Has your doctor tried to set out the benefits and risks for you, to help you decide? This thing is specific to you, so only your doc will understand what likely success and risks are relevant to you.

Hoping you’re doing well, and sorry for being slow to chat.

Richard

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#3

Hey there! Having been through gamma knife multiple times, I definitely recommend it! The worst pain you feel is the insertion of the iv for contrast! No sweat! However, you always want to check with your treatment team if you have questions. I thought it was interesting that the facility I was in (University of Alabama at Birmingham) the gamma knife room looked like something out of Star Trek. Hope it is a successful surgery.

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#4

I’m sorry, I totally missed your initial message here. I had Gamma Knife November 10th, 2016 and in February of this was advised that my AVM had been obliterated. I had a really good experience and no side effects to speak of, some minor headaches about 6 months out but not needed treatment.

The “halo” installation was interesting but well controlled, more a bit of an eerie sound when getting attached! In my case the risk with gamma was far less than a craniotomy and made my choice easy. I did consider all facts associated to both and in the end the decision was made. Take Care, John.