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AVM Survivors Network

Infoneed


#1

Our son was diagnosed with a large AVM in the mid brain area on top of the brain stem. He had Gama Knife radiation in 1989 and we have been told because of location nothing else should be done. He has had a couple of hemorrhages since and has deteriorated slowly over all these years. We have been advised now because of the continued deterioration to try the Gamma Knife again. Two or three treatments are predicted to be needed. Our son is wheel chair bound and has no active life to speak of and we see no good outcome of doing nothing. That being said we are afraid of doing harm and causing him pain we have heard of head aches being serious side effects. We are searching for info on possible success and possible negative outcomes. We would appreciate any and all input. Thank You Ron


#2

I would recommend speaking to your doctor regarding this. However, I would also say, having gone through three gamma knife treatments, it’s worth a shot. It really is a pretty painless procedure and certainly if your insurance covers it is worth trying. Praying for you guys.


#3

Ron,

Welcome to our web site! I’m sorry to hear about your son and you clearly have the best considerations for him.

I have been surprised by several people saying recently that they have had a brainstem AVM treated. I just went to try to find the conversation for you. I think this is the one I was thinking of:

1989 is a looong time ago and I would say medicine in our space has moved on / confidence in medical ability may have moved on that could allow a successful treatment. I don’t know. But I am sure a lot has changed meanwhile.

So… have a look at the thread above. I hope others will see your question and answer. I agree with Paul… take as many medical views on the benefits, risks, etc as you fancy before feeling the need to act.

Very best wishes

Richard


#4

The other conversation was this one, I think…


#5

Paul, thank you do you feel the Gamma Knife was beneficial? We have the Drs. stats but we feel if we can communicate with people going thru this process we can develop a better idea of what our son is to expect. He is 37 yrs. old now and as of now planning on doing Gamma Knife again.
Thanks again,
Ron


#6

Absolutely. I did have to have multiple treatments but it did fix the problem.


#7

BTW, I’m 36, so I hope it goes well for you.


#8

Thanks Paul, was the location of your AVM near the brain stem? I’m glad to hear it was successful.
Good Luck

Ron


#9

All of mine occurred in the cranium. To be honest, I’m a little unsure of exactly what part. But i know two of them were near the “surface” with one being deeply rooted. The two outside ones they took care of via craniotomy and the deep seated one they used gamma knife twice.


#10

Thanks Paul

Ron