Hi. I’ve had my angiogram 4 years after gamma knife and 5% is still left (about 2mm). I’m told it can take up to 6 years. I wondered if anyone else waited up to 5 or 6 years and what was the outcome please?
Also what have people with 5% left decided to do next? The doctors are 50/50 on whether they would do more gamma knife or leave it as gamma knife is even riskier 2nd time round. Thank you.
1 Like
Dear @gill1
My surgeon would not order a post-op cerebral angiogram until a full five years had passed after my cyberknife surgery. In his opinion, it takes that long for the radiation to do its work. The result of my angiogram was complete obliteration.
I think if you are 95% of the way there, you should be encouraged that in one year’s time you will get awesome news. When given no other choice, why not think and believe the best-case scenario?
1 Like
Dear Oak,
Thank you for your reply and encouragement. I’m so happy for you and your results and you’re very right in that I should too believe in a positive outcome. Thank you. Gill.
1 Like
Yes my AVM too took 4-5 years to be fully zapped. Just had my post 5 year review and no,signs of,any regrowth of AVM or anything untoward. So we’ve no reason to believe,that,your,AVM won’t be fully eradicated . I know,it’s,so hard to be patient. Hang on in there, the medics are pretty amazing folks who seem to get It right👍
2 Likes
Hi Smilerdi,
thank you for your reply. It really helps to give me the strength to keep believing as it was so upsetting when the doctors told me the AVM hadn’t gone as they expected it to. I see you’ve been through a lot poor thing, you are very brave. And you had gamma knife twice, did it come with more risks the second time round and what were those risks? Thank you for helping me.
Actually the 2nd lot of GKS was no riskier than the first. Just have more steroids to help the head Frame pin holes heal 
That’s good to know, as the Dr said it would be riskier having more radiation on top of radiation and therefore more chance of swelling ect. I’m so glad it went well for you, you must feel amazing knowing its finally gone, I can’t wait to feel like that too.
I did feel complete peace throughout my 4-5 years of waiting. I felt that the miracle of me surviving the brain haemorrhage at all was proof that God was showing me he hadn’t finished with me yet here on earth . God has sustained me throughout it all Amen!!
I hope that you too very soon have this same recovered joy 
and great hope for the future . X smiler Di
6 Likes
Thank you and you’re right, you now have a great life ahead of you. All the best.
I see that I’m two months late to the party, but I fit exactly this situation. I had gamma knife 5.5 years ago and last Friday I had an angiogram, hopefully the last. At year 3, I was about 95%. Interestingly, at year 2, there was almost no change. On September 8th, I meet with the interventional radiologist to review the results. Hopefully I’ll be able to better answer your question then.
4 Likes
Hi Michael. I look forward to hearing your great news that your AVM has finally gone. Why did they wait another 2.5 years to do another angiogram? How did the angiogram go? Gill
Hello Gill, my appointment to review the results is on Thursday, but I will certainly let you know. The procedure went well. I was not to lift anything heavier than 10 lbs for 7 days, and to be honest, I used that as an excuse a couple of times. The 2.5 delay is all on me. I was working in the Middle East at Cleveland Clinic Abu Dhabi when the AVM was discovered. There were no gamma knife machines in the United Arab Emirates so I flew to Cleveland Ohio for the procedure. I returned home to Salt Lake City, Utah just 2 weeks before Covid shut down. Since I essentially fell out of any health care system I had to start from scratch getting set up with new doctors. It just turned out that this year, my family met the $5K out of pocket max so I thought I’d finally take care of what I hope to be the last step.
1 Like
Hi Michael, I had a two year scan recently which showed no change except ‘signs of a good reaction’ around the AVM, so I was quite disappointed. It’s encouraging that you saw such a difference at three years. Do you mind me asking how large was your AVM and what radiation dose did you have? Mine is grave 4 and I had 25gy.
I’m very happy for you that your AVM seems to be dealt with.
Best
Jonny
Hello Jonny,
I’m trying to recall, but I think the AVM was 3.5cm near my pons and cerebellum with two flow related aneurysms. I was on the Gamma Knife table for 85 minutes with 14 greys of radiation. I too was discouraged at year two. Good luck going into this next year.
Hi Michael, I’m so pleased you were able to get the money, we forget how lucky we are in the UK with the NHS. Could they not tell you during the angiogram what they saw? My radiation was brilliant after one year and 95% gone at 3 years then it just seemed to be the same at 4 years so I’m praying it hasn’t stopped. They told me it would be gone in 4 years but it wasn’t. Would you have more gamma knife if needed? I would as I’m desperate to get rid of it but let’s hope we don’t need to! Gill
I just had a meeting with the interventional radiologist. He said while he was performing the angiogram procedure, he could not see anything, but on subsequent review, there was a subtle residual of the AVM that caused “early filling of a venous structure.” He’s ordering a 3-D MRI of that area and will consult with the radiation oncologist and dosimetrist. This is probably why you were asking if I’d have a second GKS. I’m good with doing more from a “willingness” perspective but I’ll have to be advised from a cumulative radiation perspective. Again, back to the original post, I’m just four months shy of 6 years after the GKS procedure. I’m not having any issues that affect me day to day, but it would be nice to put this thing to bed. The saga continues …
1 Like
Hi Michael,
I’m so sorry to hear that, although I’m not quite sure what it means. I was told I had a residual AVM with a subtle shunt, the shunt being a tiny AVM vein. Is yours still some AVM too or just some scaring residual? Let us know the outcome of the 3D MRI. How will they do that? All the best, Gill.
It turns out that I still have a 6mm AVM. The Tumor Board at the hospital I am being treated at was to review my case yesterday. I just noticed a missed call Friday night. I guess I’ll have to wait until Monday to see what they said. They were going to evaluate my options and consider the additional radiation for a second GK.
Hi Michael, I’m sorry to hear that. I hope you’re OK. It’s devastating after such a long wait. Was it smaller than 3 years ago? Will you go for more gamma knife? Let us know what the review board recommends. Gill.
Darn! That’s not the news we want.