Hi all. Its been about 3 years since my last post. I got my 3 year MRI/MRA post gamma knife yesterday. AVM ( left frontal lobe) is unchanged from last year. Its about half its original size so that is great and it hasn’t grown. I have been blessed it never ruptured and was only found with a workup for dizziness. So today after receiving the results I was pretty sad to see it wasnt gone. I will be having another angiogram in a few weeks.
Has anyone had Gamma knife and it not obliterate the AVM after 3 year? What was the next step? Thank you and hope you are all well.
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Great to hear from you, I do wish it was with better news. I was fortunate with mine being obliterated but I do know we have several members who have had gamma knife multiple times. We do also have some folks three year plus and although reduced not obliterated as of yet. I will leave it up to those folks to pass along their experience if they choose. Take Care, John.
I unfortunately have not had mine obliterated. They discovered mine in 2012 when I had a seizure at work. Since then I have had 3 embolizations and 3 radiation treatments. Still not gone but a LOT smaller. But it is still there. I will have another angiogram in a year and a half. The reason for the additional embolization and radiation treatment was because they missed part of it. It gave it a chance of recruiting 2 more arteries. But hang in there. It can take many many years for radiation to work. They have exhausted anymore treatments save surgery to remove it. If it tries to recruit vessels again, that is the plan. It is also in the frontal lobe (left). Motor strip, language area. Personally, that’s why the other treatments were considered first as compared with the the last choice. They recommended that because of my young children at the time. Didn’t want to risk being paralyzed on my right side or not being able to speak. There was always that chance.
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Dear @Megkup
I had the cyberknife, which is very similar to the gamma knife. My specialists told me that the radiation takes five full years to complete its work. Before five years, not enough time has elapsed for you to conclusively say that it’s not working. At five years postop, I had a cerebral angiogram which determined that my AVM was obliterated. My advice to you is to be patient, have faith, and take heart that you can already see evidence of thrombosis in your AVM.
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At the four year mark for me post Gamma Knife, they discovered there was still part of the AVM there. They attempted an artery embolization but it didn’t work, so I had another Gamma Knife surgery. Everything looked good after that, but eight years after the second GK I discovered the AVM grew back, because I had a second bleed. They attempted venous embolization but were unsuccessful because there are two veins in my AVM, so I had my third GK again last year. I am still waiting for it to be completely obliterated. Wishing you all the best!
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Hello! My daughter received a 2nd round of gamma knife around the three mark. The first round shrunk her AVM by around 70%. She had a really good response to gamma knife during the 1st year and although it continues working for up to 5 years, it was working at a much slower rate. We saw little or no reduction in the AVM size from year 2 to 3. We were devastated to do gamma again, but on the bright side, we were now treating a much smaller area. The 2nd gamma appears to have done the trick and her MRI shows that the AVM is obliterated. This will be confirmed by an angiogram in a couple years. There is no rush to do the angiogram. If you ever need someone to talk to, feel free to reach out - best of luck! Jill
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Hi,
My AVM is right temporal and on initial diagnosis was described as being about the size of a golf ball, but no bleed was visible. Four years after radiosurgery I was advised that the AVM had shrunk considerably but that the was still residual shunting which they wished to address with further radiosurgery which I had about 2 and a half years ago. I am currently awaiting an MRI to assess the outcome of the last radiosurgery. The consultant told me at the time that some patients need more treatments to achieve obliteration. I am sure that the angiogram will enable to consultants to give you advice on the best next step for you.
Sending you my good wishes.
My AVM was making my veins twice as thick already
I thought I was going to die if it exploded
When the angiogram was done, sure enough it looked awful
Now with angiogram it looks great
Normal blood flow
I’m 2.5 years post first gamma knife with no reduction in AVM yet but ‘good reaction’ around the AVM. Surgeons seem optimistic that it will now reduce a lot and my next scan is scheduled for 4.5 years post game knife. Then if it isn’t obliterated I guess we may need to go again. Results of gamma knife don’t seem to be linear. One member said no change at 2 years but obliterated at 3 years!
Best
Jonny
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Hi Jill. I’m so happy for you and your daughter, that’s great news. Please can I ask you what were the risks the 2nd time round with gamma knife, where they exactly the same as the 1st or more risky the 2nd time? Also can an MRI/MRA definitely show the AVM has gone without doing an angiogram? Thank you. Gill!
Hi Gill, My daughter experienced similar side effects from the 2nd round of gamma knife as she did with the 1st treatment which was swelling that had to be treated with high-dose steroids. The swelling didn’t seem as bad the 2nd time around likely because she received less radiation since they were treating a much smaller area. We also caught the swelling sooner since we knew what to look for… Liv didn’t have the classic presenting symptoms for swelling, so it was a bit of a challenge getting help early. We were also careful not to get too many unnecessary CAT scans at the ER when we suspected swelling since CAT scans have radiation. Our local hospital was able to do a ‘fast MRI’ in the ER, which has no radiation. They are not as thorough as an MRI, but if they saw swelling on the fast MRI, they could prescribe steroids if needed. In terms of the risks of the 2nd gamma knife, aside from the swelling, it would be the cumulative radiation which is never ideal. For us, radiation was the only option and we had to try to knock out the AVM. The 2nd gamma knife treatment was not what we hoped for, but we knew due to the size of her AMV it might be necessary. It seemed to have worked based on the last MRI a year ago. A follow-up MRI will be done this week and hopefully, we will have more good news. In short, we are happy we had the 2nd treatment because as far as we know, it worked. We have been told from day 1, an MRI/MRA is not conclusive and only an angiogram can confirm if the AVM has been completely obliterated. We are in rush to do this because the gamma knife is still working and we want to see the full effects of the treatment before doing the angiogram. Feel free to write anytime if you have any other questions etc. Best wishes to you & Happy Holidays!
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Hi Jilly. Sorry I’ve only just seen this message. How is your daughter? I hope she is doing ok. Thank you for all the information. She is very brave . Gill