I have an AVM and high blood flow aneurism in my occipital lobe. I had 2 angiograms already, no brain bleed or seizures, but had two choices from my neurosurgeon, brain surgery and remove them or Gamma Knife. I did Gamma Knife on 9/16/19. Waiting on my six month MRI to see if I have any brain swelling. Headaches and dizziness, and a pulse in my ear, (plus my dad died of an inoperable malignant brain tumor at 47) are the reasons I was checked in the first place. Does anyone else have bad headaches after gamma knife?
Hi,
@Linda17, it’s great to have you join us, though I’m sorry about the circumstances!
I had an AVM in my dura mater (one of the outer meninges) in my occipital area in 2017 and I had headaches, dizziness and the pulse in my ear. I had mine “embolised” with glue.
Gamma knife takes quite a long time to fix your AVM but is the least invasive, least scary option, so if offered to me as an option, I think I’d have chosen the same as you!
Consequent to gamma taking a long time, I do think you’ll have some time to wait before the headaches go away. Equally, I don’t know what you’ll see at the six month mark other than to check no significant swelling going on. 6m does seem to be the point at which gamma starts to make a difference.
I know @JD12 had gamma, so will have more direct experience to share with you.
Wishing you all the best for an improving 2020!
Very best wishes,
Richard
My Gamma knife was November 10th, 2016 for a small but deep left temporal AVM. I had a couple followup MRIs and then an Angio in February 2019 where I got the all clear and no abnormal blood flow in the area. The waiting was really difficult off the start but became easier as time passed.
I had some head aches a few months after, around the 6 month mark which is not uncommon as I understand. That is when the radiation really gets going and caused some swelling. Some have to undergo a course of steroids in and around this time, I didn’t. I experienced something referred to as “ice pick” headaches as well, sometimes several times a day where there was a sharp pain, like an ice pick, that would last a short period of time and then disappear. Scared me a lot off the start as I thought I was having another bleed, but got used to it quickly and they slowly subsided and disappeared all together. I do still have pulsatile tinnitus, a pulse in my ear, but am told it is not due to the AVM. I only hear it when really quiet usually in bed. I pay attention to it for changes but really have noticed nothing change so am going with it for now.
I hope my experience helps you out a little, and do know that some of our folks here have had much more severe headaches than I experienced. Take Care, John.
Thank you John, I have the ice pick headaches now. I just thought it was the spot the radiation may have met with the 192 beams. Not sure though.
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.