Hi.
I’ve just had my 5 year scan after gamma knife and I still have 1mm, 1%, left of my cerebal AVM after gamma knife! I am so grateful that 99% has gone but gutted there is still 1% left. I have to decide whether to go for more gamma knife, which the doctor says is more of a risk than leaving it, or live with the 1% . Im struggling and wondered what you would do or if anyone else has had this dilemma and what you did? Thank you. Gill.
Hey Gill,
I’m Merl from the modsupport team and I’m in a similar position and although not AVM related, it is neuro.
I had a craniotomy to get to a growth, they took part of it out but decided it was too close to my motor cortex to take it all. I’ve required a few neurosurgeries to deal with this little monster and each one has hit me harder and harder. I know there’s a high possibility of more BUT the question for me is do I have further surgery to try and remove more or do I manage as I am? For me, the risks outweigh the benefit. Yes, they could remove more BUT it could leave me in constant pain or (worst case) in a vegetative state.
Having 99% gone, that’s pretty good IMHO. For some that 1% can be fairly stable. I’d recommend maintaining yearly scans/dr’s appointments to keep an eye on it all and if you have odd symptoms be aware and follow it up with your medicos. Otherwise, I’d be pretty pleased that they got 99%.
Merl from the Modsupport Team
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Dear Merl,
Thank you for your reply, its been very helpful. I’m sorry you are going through a similar situation. Its been 7 anxious years for me know living with the fear and I wish I could just get back to normal and stop worryig about my health all the time. How do you carry on with life knowing it’s still there? Gill.
Hi! I agree. I would just have it monitored. The few studies I have on gamma knife put the total obliteration at 1-10 years, meaning it’s still possible for the AVM to close after 5 years. If I remember correctly, 5 years was the mean, but some would still see changes 5-10 years. My radiation oncologist called it, “a long game.” My neurosurgeon is not as patient. At 4 years, MRIs are showing 75% on mine. I haven’t had an angiogram, yet.
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Hey Gill,
“normal” ??? what’s this thing you speak of 
Normal? My ‘normal’ (which wasn’t very normal anyway) vanished many years ago and I’ve been on a never ending rollercoaster ever since. My personal view is that we find ‘a comfortable’. It’s nowhere near my former normal, but it’s all manageable and if I can accept ‘manageable’, that’s enough for me. I tried to push myself to get back to my former self, doing myself a greater injury, requiring further neurosurgery. I pushed myself too hard, too soon. Don’t do that.
I word I’ve been forced to use, reluctantly, is ‘acceptance’. I cannot change this reality. I know because I’ve tried, so I had to learn to accept it all and that’s been a very bitter pill to swallow.
Initially, it was like walking on egg shells, every ache, every pain and I was asking myself ‘Is this it??’
I think the best advice here is ‘Be aware, not alarmed’. I have what I call regular/normal symptoms (as if any of it is ‘normal’), headaches (even bad ones) are normal for me, But if that progresses to visual distortions, that’s a bit more concerning, but then if that progresses to one sided tingles, nausea and/or vomiting. I need to act, NOW!!!. These are my signs of a greater issue and I need a hospital. I have gone to hospital in the earlier stages, only to be sent home when the scans showed very little change. Over time you too will learn your signs.
My last major neurosurgery was back in '13 and I still get what I call oddball symptoms today. What I now look for is a progression of symptoms. If it’s increasing, if it’s getting worse, I need to act.
Hope it helps
Merl from the Modsupport Team
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Hi. That’s really good to know thank you. I know my AVM continued to shrink after 4 years so I’m sure yours will too. They couldnt see mine on the MRI except for a small vein which sadly the angiogram then showed was the AVM.
Hi Merl,
Yes it really helps thank you. Accepting manageable is really good advice and I shall try to do just that and also to accept this is the best outcome for me. You are an amazing strong person! Thank you.
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I think you’ve had some great input. If I was in the same position as you, I’m pretty sure I wouldn’t know which way to go, either. I think if the recommendation from the neuro is to leave it but monitor, then that sounds like good advice: after all, they know what they can see and they also know what the risks are of doing something vs not doing something.
If you leave as is, have they suggested you might have a scan every year or so to keep an eye on it? It would seem reasonable to do so, at least initially.
You do seem a bit more comfortable with all of this after chatting with Merl, which is great!
Very best wishes,
Richard
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Hi Richard, thank you for your reply. Yes Merl and Fish were a great help. It’s so nice to talk to people who know exactly what we’re going through.
The neuro said to either have another angiogram next year if I wanted to pursue further treatment or if I wanted to leave it , just have an MRI next year , which I think I should have first which ever decision I make.
Regular MRIs should be ok – no ionising radiation risk (or the other risks associated with the angiogram). Hence, they are only keen to use the angiogram if you want to actually intervene.
Let us know how you get on: always interested to know and helpful for others.
Very best wishes,
Richard
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Thanks Richard. I will do. MRIs are so much more detailed now , hopefully one day we wont even need an angiogram!
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Hi Gill. Not sure if it helps at all. But my situation is that I have a large AVM of the Cerebellum. Aside from knowing its there and it causing hydrocephalus when I was a teenager, it doesn’t really give me much grief. My neuro team have said they’ll put me forward for GK if its what I really want. But they are not confident it would be the best option for me and there is significant risk of making my life quality worse. So I am choosing to live with this (with regular monitoring). Best of luck with whatever you decide to do now.
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Hi Lulu, your email really helps thank you.
Im so sorry to hear about your large AVM and it’s awful that having gk might make things worse. You are so brave. I feel bad worrying about my tiny one but I also have a benign brain tumour which causes a lot of stress. It is also on the cerebellum and that too is too risky to remove so I know how depressing it is. How do you cope?
Thanks a lot Gill. And so sorry to hear about your tumour. Hmm, thats a great question about coping. I guess I’m a pretty positive person naturally - about health matters anyway. It would be really easy to let things get to me. But I’m determined not to do that so I try not to think too much about how this could turn out. Its a real cliché (sorry) but I’m lucky in lots of way and just try to focus on that and be thankful for every day 
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Hi Lulu. You have a really great attitude and I shall try to be more positive like you. I have read a lot about how if you are positive then positive things will happen so I’m sure you will be just fine. Take care. Gill.
Thanks so much. Thats exactly what I’m hoping! I’m a big believer in the power of positivity! :
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Hi @gill1
We’re all going to have our own ideas on risk levels.
After my bleed I was only really given the option of surgery and I’m still alive 30 years later. Post op angios showed some leftovers but the risks and the pain of more surgery meant it was left alone.
I take risks riding a bicycle and falling off regularly. I travel without insurance because the cost and paperwork is too much for me.
Statistics indicate you’re more likely to die from a shark bite than the 1% Avm.
I was nervous in the early years post Avm but now i just don’t care. I think I’d just try and make the best of your new post avm life.
Best wishes
Tim
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Hi Tim,
Thank you for your reply, it has helped me so much and I’m now actually feeling excited that I can try to let go and forget about any more treatment and get on with my new life! You are an inspiration and so brave. Thank you.
Hi Gill, so happy to hear about your progress; it gives me hope. It’s about my 5th anniversary since my radiotherapy and I’d love to get a result as good as yours from my upcoming MRI. But even if not, there might still be some room for further reduction I think. btw has your doctor discussed the possibility for embolization for the remaining 1mm?
Hi Kitsune,
Thank you. What size was yours at you last MRI? I was lucky the MRI was able to show such a small detail without an angiogram as 5 years ago they told me after 5% it would no longer show up on the MRI. I really hope yours has reduced too and hopefully completely gone. I could only have gk as it is in a risky place. Have they discussed how long yours could take to go? Keep in touch. Gill.