AVM deep in my brain, 1cm in size, Still scares me

I’m a 44yr old male living in the U.K. Who was diagnosed in 2012 after going for a CT scan for migraines I was having 2-3 times a month.
My AVM is on the right side of my brain easiest way to give its location is taking a line from my right eye and in from my right ear and where they come together is where it is.
It’s size is only 1cm which like I said is deep in my brain but still scares me, I came away from my diagnosis thinking I have a ticking time bomb in my brain, having some sort of comfort being told that if I get a bleed I wouldn’t know anything about it as I would probably go into a coma or even death. I get free health care and was told to go home and process thing in my own time but I’m petrified of the outcome of a bleed. My consultant said there are way of dealing with it, the consultant said that there is a 2-3% chance per year of it bleeding but that’s more than 0% which scares me as I have said, I think what I’m trying to get to is whether to leave it alone or have the Gamma knife procedure done or not.
I know that my AVM is small in comparison to others I have seen by Dr Google but is still significant,
Does anyone have an advice for me to ease my mind a bit.

Mark, Wow, this is a really difficult question. I think we all have our ways of looking at this and our ways of ignoring it or coping with it. I hope some other people chip in as well.

I’m pretty new to this, I’m already 50 and I’ve got a number of thoughts going on.

  1. 50 is not a bad stage to get to. I’m disappointed at the idea I might not get to a comfortable retirement but I’ve gone 50 years without worrying about my health. I’m lucky.
  2. I know people much worse off. I’ve got a younger relative who has a genetic condition which I wouldn’t fancy having and they will probably not get to 40.
  3. Statistics. I’ve tried to find out about stroke statistics. I can’t say I’ve been successful but the stats I’ve found don’t seem greatly different for a man of 50… ie if our risk is about 2-3% a year on average, even if you don’t have an avm the risk is about 1-2%. I’m not convinced by what I’ve found, so it might not be right but it is part of what I’m living on.
  4. More statistics. The stats don’t just add up each year, so don’t start doing naive maths. Again, the info I found suggested about 25% risk of stroke on average after 15 years. Now, 25% is pretty high but it ain’t 30-45%
  5. More statistics. Another thing I read was, even if I have a stroke, there’s an average 10% or 12% chance (I forget which) of it being fatal. Again, quite high but I’m prepared to look at it being low rather than high.
  6. It’s still safer than crossing the road. I havent looked up the stats on this, im just telling myself it is. I’m sure it is. I reckon I cross the road at least 14 times a day at the moment, so that’s pretty risky and I still do it every day.

At the moment, I’m coping with it by simply not worrying about it. I can actually hear and feel my avm – including some inflating veins on the back of my head. I reckon if one of those go, I’m off straight away, they feel pretty major to me. But what can you do? Nothing. Keep blood pressure low, keep off the coffee, etc and look after yourself and do all the stuff you want to get done, within your own limitations.

I’m early in, so I might get to be more dull about it as time goes on but I hope not.

I hope this is helpful. If it makes difficult reading I’m sorry, I think it’s a really difficult subject.

Go, eat your food with gladness and drink your wine with a joyful heart, as the teacher said.

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Dick, Thank you, I’ve done a little research myself but I try not to delve too deep into it as it can be hard taking in all the stats and figures. I do understand that the risks of a bleed are small but I do still think about it at times.

Thank you for your reply.


Mark Firstly welcome to the family and im sure you will find this site is great to help with piece of mind info, comments and many, many, many success stories!

I know this is a hard one to come to terms with but like yourself I was advised I had an AVM on the right side of my brain after a CT due to some headaches over the course of a week…i was given the same stats on bleeds etc and was 30 at the time…unfortunately for me i was not scheduled to see a neuro until Feb and was told in December before Christmas…well i had a bleed at the end of January with my luck, 2 weeks before my appointment!!!

After my bleed I had no option but to undergo surgery and had it removed…its been near 6yrs and the journey has been hard but i am grateful i am here to share my story and help others like yourself with comforting words.

I did a lot of research when i discovered i had an AVM and if i would of had the option to treat it when i was told i probably would of chose to do so as i would of mentally not been able to forget about it personally…you need to remember though that prior to this CT you didnt know it was there and its been 44yrs with no issues from the sounds of things and thats a way you need to look at it…however if it is playing non stop on your mind and you have possibly looked into a second opinion then you may choose to treat it now…i hate reading ppl here say they are told about DEATH by Doctors when there are so many success stories…if that is such an issue and risk then maybe treatment should be the only option to take… again it is your life and your decision to make but dont beat yourself over it cause it wont change anything… hope you find the answer your looking for soon and put your faith in God and will be sending prayers your way… God bless!

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Thank you Adrian, yes you are right, I have probably had it all my life so shouldn’t dwell on it.



It’s the right thing to reach out to others to talk about it, though. Well done. I’m not sure I said the right things above, in the right supportive way, so don’t let me put you off talking about it and getting support. I know stuff can be difficult or sometimes take over so always reach out to friends and “family” as Adrian says.

Very best wishes, Richard

Hi Mark I know how this feels to a certain extent, I was lucky enough for my AVM to be treated after a bleed, I’m almost 40 and from the UK also. Its a good thing that your AVM is small, and you can take measures to minimise the risks of bleeds, Like keeping blood pressure low and not taking any blood thinning meds like Aspirin or ibuprofen (Lesser the ibuprofen) alcohol is also on that list, But I’m just saying the things that I’ve learned from my long service here, Its best obviously to get recommendations from your doctors, Have faith also :slight_smile: , You can life in fear or faith, Living in fear is living thinking on the “what if !” while living in Faith is thinking “I’ll be fine !” and obviously its better to live in faith , its difficult but very possible :slight_smile: , Take care



Thank you Martin, you don’t realise how alone you feel until you meet other people with the same problems as yourself, you can relax after you read the stories of others.


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I agree and relaxing is one of the best things you can do to help your situation :slight_smile: , Take care Mark and keep in touch, Thanks


Hi there. I’m 43 and live in the UK also. I have known about my AVM since I was 24, so a fair amount of time really. My problems began when I was 12 and began to have migraine-like headaches. By 14 they were unbearable and I was diagnosed with recurrent Hydrocephalus. At 24 I was offered an MRI scan and informed that the reason it was recurrent is that a large AVM is blocking the normal escape route for CSF. At the time I was informed it was inoperable. But since then the doctors have said I could have multiple embolisations and gamma knife. So far I have decided not to proceed. Mainly because it seems very invasive but also because I am scared it would make things worse for me. Yes there is a small risk that AVMs will bleed each year. But I sometimes wonder what that risk is as compared to deficits from having a procedure. Good luck in whatever you decide.

Hi, I had a whopping 4.5 cm avm in my right frontal lobe. Be hugely grateful it has been found. Most people aren’t as lucky as us. I had embolisation and radio therapy. Best thing that ever happened to me. When I was diagnosed (incidental through routine hearing loss.) I just kept crying all the time and thinking about dying during the operation. All this is probably normal. I live near Preston (UK), if I can give you any advice or encouragement just ask. Everyone on this site is affected by this in someway. I have found great solace talking to people from all over the world who have been really kind and supportive. Keep your chin up. Warmest regards Alex


Hi, I’m sorry to hear about your diagnosis. I am currently in the same situation as you and fully undertand what you are going thru. Earlier this year I was suffering from recurring vertigo episodes and decided to get get it checked out. I was diagnosed in June of this year with an AVM in the right side, deep in the brain; I am 34 years old. I was told most likely I was born with it and that the vertigo episodes are not related to it. There are days/months that I forget about it since I have no symptons at all and there are others where I remember that I have a time bomb in my brain and I get very emotional. Fortunately I work at a hospital and have been able to get various opinions. Due to the location, surgery is not a good option since it would be too invasive, embolization would be complicated since it is has too many branches near a deep brain artery and gamma knife is an option but it can damage healthy brain tissue in the process due to its deep location. For the time being, I have decided to leave it alone with the potential of rupture being 2-3% per year and leave it up to faith. It currently is not causing me any deficits or damage and I would prefer that than instigate it and cause myself some damage. I suggest getting several opinions to know your options and prayer for the days that it just seems too overwhelming.

I don’t have much to contribute to this discussion other than knowing through research that smaller AVMs are more likely to rupture. My experience with an AVM is entirely different than yours because we had zero warning signs and my daughter 's ruptured just over 4 weeks ago. It was on her cerebellum and she’s still in intensive care. She can open her eyes and that’s about it. I realize that treatment options are frightening but the bleeds cause massive trauma to the brain. It will take years for my daughter to recover and no one really knows what we can expect. I would investigate all treatment options carefully. You do not want to have a bleed.

Hi Mark, missed your post earlier. I’m now 49 and had no idea what an AVM was until I had a bleed in May of 2016, I have since had Gamma Knife November 10th. I chose gamma based on the surgeon’s recommendation that craniotomy would likely leave some fairly significant side effects. It was a tough decision but I don’t want to go through the bleed “process” again. Gamma leaves me at risk but in balancing everything was the best choice for me. We all have so many different details associated to our individual cases, just thought I’d pass my my bleed, decision and treatment choice given my circumstances.

Hi JD12, I try to put it in the back of my mind, I’ve not made a decision on my AVM as yet. I know about all the procedures and the Gamma Knife would be the one for me, just trying to out way the pros and cons of it all.


JD12 http://www.avmsurvivors.org/users/jd12
February 4

Hi Mark, missed your post earlier. I’m now 49 and had no idea what an AVM
was until I had a bleed in May of 2016, I have since had Gamma Knife
November 10th. I chose gamma based on the surgeon’s recommendation that
craniotomy would likely leave some fairly significant side effects. It was
a tough decision but I don’t want to go through the bleed “process” again.
Gamma leaves me at risk but in balancing everything was the best choice for
me. We all have so many different details associated to our individual
cases, just thought I’d pass my my bleed, decision and treatment choice
given my circumstances.