I think it was around 30mm from my MRI scan last year. My doctors also partially treated it with embolization, so that’s also why I wondered if that was an option for you.
Hi. Mine was about that at 4 years too so hopefully yours has gone now. Let us know how your MRI goes.
Hello, I’m new here and finding these discussions so helpful. My first AVM was discovered in 2021 when I loss hearing in one ear. It’s a particularly unusual AVM, and it was determined too risky to address and we have been monitoring it for two years. It was hard for the first few months but then I managed to park the worry, I replaced worry with the fact I have been living with this AVM my entire life (currently 54). It has caused me to lose my hearing in one ear permanently now but many times over the years I had sudden but temporary hearing loss as far back as my 20’s.
Over the years I have kept a health journal of many strange events that I now know are related to my AVM’s. See recently I was hospitalized when I suddenly lost my balance, vision and the ability to walk. It was a super strange feeling with little warning, zero pain not even a mild headache. I spent 10 days in hospital where I learned to walk again. It’s now 7 weeks post the event and I am 95% back to my normal. However they discovered two more AVM’s, and I am awaiting an appointment to determine next steps. I have two different opinions so far, one neurosurgeon said leave it treatment will surely cause damage based on location, and another said Gk after some serious discussions but the risks are high.
I know I will continue to have issues as I have for many many years, but as I age they do seem to be more debilitating however the risk for treatment seems to be higher than the risks of leaving it alone in MY case, but this is an ongoing discussion.
What I do know is there are NO easy answers and I wish you the best but if it were me and 99% taken care of, I wouldn’t risk it intervention.
Life is precious and I really do believe worry and fear contribute to negative health outcomes. I would use my energy to find peace with the fact that your treatment gave you 99% improved so far - congratulations for that!
Wishing you all the best
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Hi Lisa, I’m so sorry to hear what an awful time you have been going through and I think you are amazing that you have managed to walk again, well done you. I wish the doctors could be more positive for you. Hopefully they will do soon.
Where are you AVMs? Mine is in the right parietal and I too have had trouble all my life with my ear. Thank you for your kind words of encouragement , you are so right, I will do that.
Let us know how you get on with the doctors. Wishing you all the best too. Gill.
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Hello and thanks for the encouragement. One AVM is located Inner Auditory canal and crossing the dural and two other AVM located at the brain stem. Tricky locations, not sure what the next neurosurgeon is going to recommend.
Hi Lisa. I can imagine how scary that must be for you, especially having 3, its so unfair. My benign tumour is on the brain stem too and I’m hoping that with the advancement in technology one day they will be able to remove it safely. I will pray for you too. Gill.
Hi Gill!!
My neuro radiologist had decided to leave 1% of my avm when he embolized and that pesky little thing never grew back 5 years later. Of course not everyone is me and not everyone gets this lucky. But what I’m trying to get at is that there are stories where that 1% dies off from lack of feeders. I hope that gives you some hope and peace of mind. My situation consisted of embolization and craniotomy. The reason that 1% was left behind was because it was right on my optic nerve and my team didn’t want to leave me blind on top of the risk of paralysis. I ended up a hemiparetic, but luckily not blind (legally blind yes but not completely black for the rest of my life). What I would advise is take a breath and take one day at a time. I know it is very hard to do because I have been in your shoes.
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Dear Teiry
Thank you so much for your reply it is such a great help to me. I’m so sorry to hear it has happened to you too and that you now struggle with your precious eye sight. You are very brave and amazingly positive. It would be fantastic if both our 1 % died off! How do you have it monitored now and will an MRI show if it has gone or will only an angiogram show that?
Do you still have to declare on medical forms and travel insurance forms that you have an AVM? And are we safe to fly ? Thanks again. Gill.
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Oh Gill here’s to hoping your 1% dies off too!! My avm was monitored via angiogram. Yearly, then bi yearly, and then graduation from them. I’m not sure if there’s any other way to monitor them, only your doctor could answer that really. I was deemed safe to fly on my first year post stroke. You have to ask your doctor that question though. They don’t just randomly tell you. I don’t remember filling any forms (my husband probably did all of that) Sorry I’m no help there! I’m also on medicare and disability and they both knew I had an avm. And they know it’s gone but I’m still eligible due to my stroke.
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Hi Teiry, thanks for the information. Do you say your AVM has gone now then, even though you have 1% left? Thanks. Gill.
Sorry to hear about that 1% and I know it would be a hard decision to make… but definitely if they say that attempting to get that 1% could cause you issues then I guess you need to weigh up the risks that could place on your quality of life!
As Merl stated if he had to remove any more of his it would cause problems, which I can understand and believe we do panic naturally but should switch that panic into awareness to help us live.
I wish you the best and remember there are many ppl out there with AVM’s that don’t experience any symptoms at all in life… then you have others who unfortunately can’t operate or treat there’s altogether… it’s bitter sweet but at least you are aware of what you have… I was made aware of my AVM 1 month prior to suffering a bleed and I can tell you it literally saved my life as I was aware of my condition and could let ppl know before I passed out… God bless!
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Dear Adrian,
Thank you for your kind words, they really help me towords my decision. I’m glad your AVM was found and helped save you. I’m starting to feel more positive that I can move on from this and hopefully stop worrying and start to let go. Gill
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Thank you, but I don’t know about that. In recovery, If there was a right way and a wrong way, Ive done 90% of it the wrong way and paid dearly for it. Me ‘accepting manageable’ has been a L.O.N.G., often painful journey. Certainly NOT a process I would recommend to anybody. Many of my posts have the line “Don’t do that.” Why? because I did and…
I have to give a BIG + for this post and specifically this statement.
But I also have to say it can take time for us to get to that point of awareness. We all have our own limits, our own triggers and our own ways of managing around it all. Initially, I tried to gauge my recovery by what the medicos said, but I couldn’t reach my own milestones, let alone the Dr’s, without being symptomatic. Then I tried to gauge it by other’s journeys, they could recover OK, why couldn’t I? I soon learnt I can’t be gauging any of it by any other measure than my own, I’m the one living it, I’m the one trying to deal with it, trying to manage it. I had to function within my limits. Some days I could leap a tall building in a single bound (OK, bit of an exaggeration 
), but then some days I’m lucky to be able to crawl out of bed. You too will learn your limits and your body’s warning system when those limits are being reached. Those warnings maybe subtle, but if I ignore them, they increase exponentially. It doesn’t take long to overwhelm me. My body tells me “Lay down or I’ll put you down” and if I ignore those signs further, it can put me down hard, often taking days to recover from.
Merl from the Modsupport Team
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Hi Merl. I’m sorry to hear what a difficult time you have had. You have learnt so much and you are very wise, thank you for sharing it as you make so much sense. Take care. Gill.
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