I’ve had the Gamma Knife three times. Invasive surgery was never an option because the AVM is deep in my prefrontal cortex. Embolization (via the artery and via the vein) failed both times. I’m probably one of the rare cases to have three Gamma Knife surgeries, but for anyone who had it twice, what was the outcome? Was it completely obliterated after two treatments? Or do you still have to watch out for symptoms of another bleed? Just wondering if it will ever really be gone. Thanks for listening. 
-Julia
2 Likes
I was fortunate and only g
had GK once, I hope yours will be obliterated this time! Do you have any scans planned to have a peak and see where it is at? John.
Hi Julia,
I don’t like to say it out loud but I have read stories here of people doing once or twice and that seeming to be it but there are also stories of people seemingly forever chasing it.
So I think it’s going to depend.
I’m an embolization patient, as you may remember, and I look upon my embolization as perhaps not going to last me forever – who knows, right? – but my current plan is that I’m looking forwards not backwards. I’m good today and I’m ignoring the fact I’ve had one of these things and I’m just marching forwards.
If it gives me a niggle at some point, I’m not sure what I’m going to do but for the most part my plan is that it is behind me. If it starts to do more than niggle then I obviously need to take that seriously.
But meanwhile, it is not stopping me do anything and not making me feel weird, so I’m just grabbing life and living it. I’m not doing anything rash or irresponsible. Just putting it behind me and living the normal life we assume others have.
In case these thoughts help
Richard
2 Likes
My doctor wants to do another scan, but I have a lot of trauma around scans, needles, etc. I passed out the day after my last MRI. So I’m having a hard time facing it. And I am conflicted about the scan, because if they still see something there, I’m at a loss for treatment options.
1 Like
I think I understand to some extent, I don’t experience the same fears but the way you state it makes sense to me. A tough decision for sure, from two different angles. I can only speak from my perspective, third treatment, and three years out…I would probably want to know. Again that is a very one sided perspective. I certainly have not lived the challenges you have. I wish I had more to offer than an opinion! John
1 Like
My family is very involved in my care-- I’m young and live at home. They want to know, but I really don’t. They keep discussing “what if it didn’t work,” which is really shocking me because I never imagined they wouldn’t believe in the surgery’s effectiveness. I’m just navigating a bunch of emotions as I deal with my own conflictedness.
1 Like
I had 2 gamma knife surgeries 3 months apart in 2015 because my AVM was too large to treat in one go. Mine was too deep in my cerebellum so it could not be operated on. Three years after the GK treatments I had an angiogram and it showed that the AVM had massively shrunk but approximately 10% remained. I didn’t have any further GK but was advised to wait another year. At the 4 year mark my new angiogram showed it had been fully obliterated, 4 years is a long time to wait but it worked 
6 Likes
That’s so great to hear, thank you for sharing your story!
According to the drs my daughter will need 4-5 rounds of gamma knife!!
She only had one but did not respond well. The second round kept on being pushed off and we’re in the process of trying to figure out what to do.
But I understand that her AVM is diffuse, which will be different from many other people (and hence the reason perhaps that a staged approach is the only approach, other than watch and wait).
I’ve had three rounds, which I didn’t expect at first. I was under the assumption that the first round would be enough. At least you know in advance; I know it doesn’t make it easier though. I wish you all the best!
1 Like
Could be.
But even after they complete treatment they said it’ll still be 2-4 years before we see the results.
2 Likes
I had another traumatic MRI yesterday, and now I’m waiting to hear from my doctor.
My fingers are crossed! The waiting is so hard, I always have every scenario running through my mind. John
2 Likes
Hi Julia,
Totally understand your anxiety around scan time and making big decisions. That’s certainly one of the hardest things about the AVM situation we all find ourselves in. In terms of whether a third gamma knife will work I would suggest that if the first two have shown some progress then there is good reason to believe a third round will help to further reduce the size of the AVM. In terms of your anxiety it may be worth speaking to a specialist in CBT/hypnosis to help you reframe these stressful experiences. Having been a big sceptic I have been quite amazed to see this work to great effect.
All the best,
Jonny
2 Likes
Thank you all for your responses. My results showed that the AVM had decreased by a minor amount, so that’s good news. It’s just hard knowing I have another couple of years to go, and then an angiogram at the end to confirm it’s gone. But at least the news was positive and the radiation does seem to be working. 
1 Like
Thanks for your suggestion!
My best friend is a psychotherapist, I’ll ask what she recommends for trauma. I wouldn’t have her treat me, but she’s a great listener and helps me through the stress of it all.
2 Likes
Hey Hermione. Hope you don’t mind me contacting you. But I note you’ve had Gamma Knife multiple times. I just wondered what finally prompted you to go for it. And also how you found it. I’m asking cos my own AVM is deep down in the Cerebellum. I have been advised more than once not to attempt treatment which could well make things a lot worse for me. I suffer very little day to day at the moment, although obviously I live with the constant knowledge that I have an AVM. Surgery is definitely not an option for me due to position and the docs think Gamma Knife would be my only choice although I’d have to have embolisations first to reduce the size. So far I have steered clear though as they’re only 50% confident of getting it anyway. I have never felt that is good enough odds.
Lulu
2 Likes
Hi Lulu,
I was 10 when my AVM was discovered when it bled. I had the Gamma Knife six months later. My doctors and my parents made that choice because I was so young. Five years later, they discovered it hadn’t totally been obliterated by the first treatment, so at age 16 they performed the surgery again. (When embolization failed.) Again, I was young and didn’t have much say, and I still felt like I was dealing with the first episode.
When I had another bleed in 2020, I talked to my doctors right away about the risk of another Gamma Knife; it was the bleed that told me that the AVM was back.
I judged both the doctors’ statistics and behaviour, i.e. did they genuinely seem concerned about doing the Gamma Knife for a third time, eight years after my second treatment. My AVM is in the right prefrontal cortex, and I didn’t have side effects from the radiation the first two times.
I didn’t sense much apprehension on the doctors’ part for a third treatment of radiation, and even right before surgery I talked to my surgeon and confirmed he thought I was making the right choice. I asked all about statistics of risks, and the only risk was a one in 10,000 chance of getting a tumor from the radiation. That seemed positive.
Anyways, this was my journey and 2.5 years since my third Gamma Knife the AVM is slowly shrinking. Thanks for reaching out, and I wish you all the best in your decision! Feel free to contact me any time.
-Julia
1 Like
Thanks so much Julia. That’s really helpful. And all the very best to you.
Lulu
1 Like