I finally had my scan results yesterday 2.5 years after a single fraction gamma knife for my grade 4 right occipital AVM. The scan shows a strong ‘reaction’ in terms of edema / swelling around the AVM but it hasn’t reduced in size at all yet. The surgeons seemed encouraged by the reaction and said it shows the target was hit and that I will respond well, but I must admit that I’m a little disappointed. I guess I was hoping for more progress, even though they did say this would be a 5 year journey. My next scan is in another 2 years, so I suppose I need to reset expectations and just forget about it as best I can. I’m lucky really because I have no significant symptoms and am generally well despite my 2019 bleed. I just woke up today feeling a bit depressed about the prospect of living with this thing for a few more years at least. Has anyone else had a similar experience, especially those with a happy ending!!??
Cheers
Jonny
I know what you mean. I was hoping for more encouragement for you, too. However, if the “plan” is really a 5-year one, then I guess we shouldn’t expect as much as this stage.
I think you’ll take the prize for patience when you get there.
And very good to know you’re not struggling with symptoms etc.
If it helps, I realised I’ve been a moderator here for exactly 5 years recently and it doesn’t feel anything like 5 years to me. Hopefully it will pass more quickly for you, too. At least in retrospect these things don’t always feel so long.
Thanks for that Richard. You’re right that the years do pass quickly, it’s hard to believe it’s been 2.5 years even. How is yours progressing and where did you have gamma knife?
I was reflecting a couple of days ago that I feel 100%. I’ve felt like that for a while, though I know a few months ago I was having a bit less of a positive time for some reason.
I had an embolisation rather than gamma knife, so no expectation of needing to be as patient as a gamma knife patient. I thought I’d ask be done in a few days but (for those of us who over analyse ourselves maybe) it still takes quite a long time to get over an embolisation. My embo was in April 17, so just under 5 years ago.
I’ve just thought to look up how long I’ve been a mod and it was 1st Feb, so I’m not quite at the 5 year mark yet it seems!
Hello I’m having my CT scan and then scheduling my cyber knife . They got 98 percent of my AVM and they have 2 small veins to get to .
I was just wondering if you had any side effects with this . I’m very scared to have this done . I think I will only need one treatment . Just wondering how it was , how you felt . And how many treatments you had .
Hi Chloe, I had one treatment (so far) for a large inoperable AVM in a key location. High dose (25gy marginal dose) to 3 cubic cm treatment volume. I had some tiredness and headaches for a few weeks afterwards but to be honest I’m sure this was due to the frame fitting, the stress I was under and the fact I had only recently had a brain bleed and was still recovering. I really would not be too concerned as it sounds like you have only a small treatment, which should carry a very high chance of success. Your neurosurgeon should be able to quantify your particular risks which should give you reassurance. Ask all the questions you need. You then need to balance that against the risk of future bleeding from not treating it. For me, having had one bleed, it was a no brainer (no pun intended).
Best
Jonny
Thank you so much for the feedback. My neurologist told me the same thing the risk is not worth it . And like I said I only have 2 percent left very small.
It’s just scary and they always tell you what could happen.
I appreciate your response and hope all is well with you
I’m in the exact same boat and can relate so much! I have a large inoperable avm that bled 4 times (last bleed was in 2018). I got my first dose of radiation 3 1/2 years ago and my second dose 1 1/2 years ago.
My last checkup was before my second dose, so 2 years after my first treatment and despite trying to keep my expectations low it felt like a punch in the gut when I found out there was hardly any change.
My doc was pretty optimistic and showed me that it is reacting to the treatment even if you can’t see a size reduction yet. I have about 20% left that’s still completely untreated because they want to take it slow to minimize damaging surrounding tissue. I hope both of us can get some good news soon and actually see a change.
I know you were asking for some positive stories, but finding your post just made me feel less alone, so thank you for sharing!
Hi Julia, 4 bleeds? Wow, have you recovered well and do you have lasting problems from the strokes? I have some left peripheral vision loss from mine but that’s all, so feel pretty lucky! It sounds like you’re having fractionated treatment, or perhaps the second dose was the same target. Where is your AVM? Mine is right occipital. As you say it’s great to hear from other people in the same situation. I really hope they can get rid of your AVM. Sorry for all the questions!!
Best,
Jonny
Yes I had the embolization last year and radiation march of this year . So far so good . I have to go back for another angiogram in march of 2023 to see if it’s gone . Fingers crossed
One year is fairly quick, but with the little remaining fingers crossed as well! Mine was zapped somewhere between 14 months and 27 months. A wee bit f a back log prevented the 12 and 24 month follow ups! Take Care, John.
