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AVM Survivors Network

I have an AVM and high blood flow aneurism in my occipital lobe

Hi Linda…My 18yr old son had GK treatment for his occipital lobe AVM 2.5 yrs ago and had frequent and intense headaches from the treatment for 6mos before they started tapering off. Also he would have migraines which would affect his vision. It was a very tough time for him, however, these have almost gone away after 2.5yrs. My bet is you are experiencing the same thing…hang in there as all will be well after the treatment does its work. We are almost at 3 yrs post treatment and the AVM (which was very large…5cm) is almost gone!

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Yes I had gamma knife in 1982, still have terrible headaches.

That’s terrible, that’s along time. I figured that could be the case.

When I had my embolisation, my interventional radiologist advised me, “I’m planning to reduce your stroke risk. I can’t say that I’ll do anything about headaches”. And that was the point: getting your AVM treated is focussed on the risk of rupture and what might be done to reduce that. The brain is far too complex a thing to set out to fix headaches. Any neurosurgeon who promises to sort out headaches is probably fibbing.

Very best wishes,

Richard

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Yes that’s so true. My neurosurgeon gave brain surgery has the first choice to totally get rid of the AVM and aneurism, In some ways I wish I would have just got it totally gone. But he said surgery is an option if it’s not gone by 3 years. Dr. Justin Frasier at UK Chandler in Kentucky is my neurosurgeon.

Hello Linda, yes, I had bad headaches several months later after my gamma knife surgery. I too had two flow related aneurysms. I just had my 3 year MRI and cranial angiogram three weeks ago. The aneurysms are gone and so is 90+ % of the avm. The doctors feel the gamma knife is still healing and how it will be all gone by my 4th year post surgery. The headaches go away after a while. Hang in there.

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Thank you for the information. I go back in March for my first MRI since Gamma Knife. Do all neurosurgeons wait 6 months after, before they see you?

My neurosurgeon recommended I get an MRI beginning at 6 months and every 6 months thereafter. However, there was not much change at either 6 months or 1 year so my interventional radiologist said once a year is ok. At 2 years there was some but not much change. Again, at 3 years, mine was 90% gone.

I was one year for my first MRI, two years for my second MRI and then an angio a few months after that. After the angio was the first time I saw the neuro surgeon post gamma knife. I was fortunate to shake his hand, thank him and tell him I hope to never see him again! He got a good chuckle out of my short speech! Take Care, John.

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Thank you for the information. I will update in March when I have my first MRI. I’m glad yours is 90% gone.

Well I’m glad you finally got to see him, and shake his hand, I hope your doing good now. I see my neurosurgeon after my MRI on March 13th. We’ll see if anything has changed.

Hi Linda,
I too had gamma knife. My head pain lasted about 9 months constantly every day then went away but now it has come back again 10 months later! It’s scarey because you worry it might develop into something more serious but thankfully it never has. I think it’s just bursts of pain as more of the AVM goes . I hope your pain goes soon. I think I cause a lot more symptoms just from worry and stress so try not to worry if you can. Gillx

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Thank you! I’m glad you shared, hopefully mine will stop soon. I’m not giving up hope that it will go away. March will be the six month mark so we’ll see if anything has changed.

Good luck, let us know. 30% of mine had gone at 6 months so maybe the pains a good thing as maybe it shows its working! X

I hope that’s true about the pain.

Thank you. I have been having issues so haven’t been on here as much. So much weakness and numbness. I hope your right about it being gone.

Hi Linda, have you spoken to the gamma knife people or doctor about your symptoms as maybe you could have an MRI ASAP just to be on the safe side. I know I did when ever I was concerned. I hope you’re OK. It’s a long hard wait isn’t it. I’ve been waiting nearly 2 years and it’s not easy. X

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I am waiting to go on March 13, having another MRI and seeing my neurosurgeon Dr. Fraiser at UK in Lexington. It is a long wait. I just figured my symptoms seem to be what a lot of other people on here have, so I am waiting to see what they say. Thank you! I hope all is well with you.

Hi Linda, I’m pleased you’re getting checked out, it’s best to make sure you’re OK. Let us know how you get on. Was your gamma knife to treat your AVM and your aneurism? X

Yes it was to treat them both, if it works. If not, he said brain surgery in 3 years. So hopefully it works. I will update after my March appointment. Thank you very much for asking.