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AVM Survivors Network

My Story

Hello there @emmaob, welcome to Living with Ben’s Friends. I’m so sorry to hear about your condition, but I’m glad that you found this community. I hope that we can be of any help to you. Please let us know if there’s anything we can help you with. If you have any specific questions, the search icon (top right) can help you browse through recent topics that fulfill your interest. Also, feel free to post your own discussion thread, I’m sure it can help other members too!

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On 26th May last year at the age of 19, I went to work as usual. I have no memory of this day but I am told that during my shift I asked to leave and go home as I had an awful headache, I got home at around 6.30pm and started vomiting and my headache was worsening. At around 8pm I went into a seizure lasting approx 40 mins, my GP came and called an ambulance. I was taken to Naas General Hospital where my family were told there was little hope and to prepare for the worst.

I had numerous scans of my brain which revealed I had an intraparenchymal hemorrhage (bleeding within the functional tissue of the brain). I was transferred to Beaumont Hospital where I underwent an emergency right temporal craniotomy (surgical intervention for the bleed). I was then placed on life support for a further 5 days. It was originally proposed that I undergo radiation to shrink my AVM, which had caused the hemorrhage and subsequent seizure, however this changed due to an aneurysm that was forming and instead on the 18th June I had a further surgery on my brain, a resection to remove the AVM that caused the prior events.

Unsurprisingly I have little memory of these events or my 5 week stay in Beaumont. Today I struggle with my short term memory and often feel like I am in a dream when I think of these events and sometimes think this didn’t happen to me and I find that confusing, as part of me feels like I am going to wake up and everything will be back to normal. I am starting to get myself back on track and I am hoping to get back to college using the aids and strategies i have been taught in order to complete third year and continue on with my studies.

Has anyone else here lost their memory and if so does it improve enough to the point where you can almost be back to the way you were before? I’m sick of hearing every brain injury is different from my psychologists who never give me a straight answer. I’m also scared of going out and drinking because so many people have told me I need to be so careful but no one ever tells you what your limits are, I’m lucky that I’m no longer on Keppra for seizures and only experienced the one but I don’t remember any of that, my fatigue and my memory are really the main things that affect me daily when my fatigue isn’t managed my memory is terrible, I haven’t talked to anyone with an AVM who experienced any of this and I find it really lonely to feel like I’m the only one who’s experiencing this and no one can give me an answer or even relate to me

Welcome to our group! I discovered my left temporal AVM due to bleed, extreme pain and ultimately didn’t have a craniotomy but gamma knife. My memory, particularly my short term memory was really poor, and most of the time around the bleed, ambulance trip and hospital stay is murky at best. My short term improved slowly over time, and is not quite what it once was but I’m also in my fifties so that might be playing a role. I love the saying that I can remember every word from an 80’s song but not why I went to the kitchen!

Now my recall is slower though, most info is still there, it just takes a little longer to locate. Most would never know, but I can tell. I don’t want to sound like one of your psychologists, which I’m certainly not, not all these are different! I can tell you despite being different there are tremendous similarities, and one is time. The brain is slow healing, you had major trauma and patience is key. Recovery goes on for year, stay at it! Take Care, John.

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Thank you for your words of support it’s good to talk to someone who’s had a similar experience. Thanks Emma.

It takes some time to recover and definitely try and get used to how your brain functions after a bleed. I also had a rupture except I was 10 when my AVM rupture happened. As for how I was at school it was best to explain the short term memory loss to the teacher and she would right down some notes for me. I was cut a little slack because she worked in the same school as my mother and 2nd she had already had my 2 older brothers before me in her class.

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Hey Emma,
Welcome to Ben’s Friends. Lots of good people with a ‘lived experience’ here. In other words our info doesn’t come from a book, it comes from our own ‘lived experience’.

I too have had a craniotomy and I too struggle with my memory. If I don’t write it down, it’s gone, I use a diary to take little notes, alarms as reminders etc etc.
I’ve required a few neurosurgeries and each one has hit me harder and harder. Initially it was all put down to recovery ie ‘Things will get better…’ and they did…to a point. I never did get back to my original starting point, things had changed and as much as I pushed myself to get back to normal, my body pushed back. It was telling me to slow down. My body was showing me my new limits.

Now, I didn’t listen to my body. I convinced myself I was building stamina by pushing myself past those limits. My body was telling me ‘Slow down or I’ll put you down…’ I ignored all the signs and it put me down HARD. I ended up back in hospital requiring further surgery. I have been on a medical rollercoaster ever since. My STRONG recommendation… …Don’t do what I did. Listen to your body.

“I’m sick of hearing every brain injury is different from my psychologists who never give me a straight answer.”
OK, so I’ll give you a straight answer “…every brain injury is different…”. Sorry.
For many years prior to my own situation I taught people with disabilities independent living skills, basically how to live in todays society. No 2 people nor their disabilities/abilities were ever the same. Every case had to be managed and dealt with individually. No 2 brains are wired in exactly the same way. Two individuals could have exactly the same injury, by exactly the same cause but have vastly differing outcomes. I have often explained it a bit like this:-

“When you hurt your arm it affects your arm. Give it a few weeks and the arm heals and things go back to normal. But when we hurt our brains it can affect EVERYTHING and never in the same way. You can give it a few weeks, you can even give it a few months and it can still be affecting everything…”

I tried to measure up to others ie 'My friend ‘Bill’ had one of those and he’s OK…" or my favourite (NOT) line “Ohh you just have a low tolerance to pain…” I have a low tolerance for people who have never been ‘here’, who wouldn’t have a clue of the realities of it all, telling me how to manage. I learnt that I have to manage all of this for me, not anyone else. Others may have a view or have advice (which I accepted…with a smile) but in all honesty 3/4 of them had no idea of the realities of it all and the others were mostly anecdotal ie 'My friend ‘Bill…’ and at the end of it all I still had to manage my symptoms for me.

JD12 is 100% correct “The brain is slow healing, you had major trauma and patience is key”. I can say that now, but back when my journey started I wanted it right and I wanted in right NOW!!! I had 2 speeds prior, Full tilt and stopped. Now I’m lucky to be getting to 1/2 speed without being overwhelmed with symptoms. I’ve had to learn to pace myself and this has been very foreign. JD states “Recovery goes on for year” I think he means ‘years’. My last surgery was in '13 and I’m still recovering, but I certainly agree with JD on “…stay at it!..” even a little improvement is an improvement.

This is not an easy journey. We know this because we live it too, so come talk to people who know, come talk to us.

Merl from the Moderator Support Team

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Your life changed forever on that day. I’ll be direct, “touch the brain, you’re never the same” is about an honest and correct statement you can ever remember. People care for as long as it doesn’t affect their life. Ultimately, you are fighting this battle alone, the only people who can understand are people who have experienced it themselves and even then, nobody has been affected the same way.
My words may be cold and not “Little Gretchen Sunshine”, if that’s what you’re looking for. Your adventure is just getting started.
Ever forward.

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Welcome to the family and hope you are doing much better while dealing with this… We can only say that it is correct that every injury is different and the doctors dealing with you are the best people to give medical advice based on your circumstances… as frustrating as it may feel like it is without a clear answer its the harsh reality of what you are going through.

Please keep in mind that alcohol is well known to trigger seizures in people with previous brain injury or history such as AVM etc… Please look after yourself and I know its hard at your age but you really need to think about the future and the rest of your life you have to live… God bless!

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Hi i had a craniotomy in 2017 for a left temporal bleed and AVM - you are right everyone is different and heals/comes to terms At different times i went for rehab after hospital and met a group of various individuals who had various brain problems and the neuro nurses said that we will all be different in our recoveries some making a good One and others not so good but one piece of advice given to me was - you are lucky to be alive!
Don’t beat yourself up over not recovering more quickly but think of it as making the most of the new chance we have been given, whatever that most is.
I am eternally grateful to my wife who saved my life and understands my new way of being.
Regarding memory loss and fatigue - i am still suffering with both although i’ve learnt how to live with them just adjustments to your life eg when i feel tired i go to bed! It works fir me also i no longer drink alcohol as it can bring on seizures and why kill more brain cells enough damage has been done there.
Take care of yourself and make the most of what has been given to you - i wonder how many people aren’t here to write on this blog!
Peace be with you
Andy

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Your story sounds A LOT like mine!! I’m still waiting for whatever “normal” is, but I have hope that things will continue to improve. we’ve come a long way from almost meeting death. I’m learning to give myself some credit for still being here and doing what I can!!! :slight_smile:

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Dear Emma, I hope you get better and overcome this difficult time of your life. My son had an AVM on the left side and had to undergo a craniectomy and embolisation to remove the AVM. This caused memory issues and from his and another friend experience, the best thing to do is physical exercise, speech therapy and continuous reading and using of computer apps to help with the memory issues. The younger you are, as it is your case, the best chances to recover. God bless you

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Alas i fear age is not on my side - well into my fifties sounds better than late fifties but i still have life and love to give and when i was at the neuro rehab hospital there were people of all ages - some younger and some older than me!
Also has anyone ever had the headache go completely - mine started when i had the bleed ( although i always suffered from migraines) and it has never gone the neurosurgeon said that it might never go and three years later still got it
although most times you just get on and don’t notice it too much - however too much screen time can make it worse!
One thing i do know is that the human body has an amazing way of adapting - we just need to let ours find their level.
Much love for now
Andy

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I just noticed the similarities in your stories, too! I’ve sent a link to Emma so she finds your story.

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Forgot to ask Emma if your head itches? It’s the only thing I CAN’T get used to!!! :woozy_face::woozy_face::woozy_face::thinking::thinking::thinking:

Hello Emma

I don’t often reply to these stories but I too was 19 when my AVM ruptured.
It screwed my life up!
My memory did improve but slowly. I had to do a lot of kids games again to teach my brain how to remember.
About 1 year after the bleed I was more stable and could drink a little but 1 glass and I would lose my balance etc
So start slowly and build your consumption slowly.
30 years later and im going backwards again. 1 drink and my memory will be almost zero.
5 drinks and I will have little brain power the next day.
For me the information is still in my brain but on many days I can’t access it or it will be very slow. Therefore I can have an intelligent adult conversation 1 day but not say anything in a group conversation 2 days later.
Unfortunately you’re probably on a rocky road for life FOREVER. If you want to do something then find a way. Good luck

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I was 50 when I had my hemorrhagic stroke. I’m 59 now. I’m not the same person.

I don’t think we will ever be the same again but i am learning to adapt to life and things aren’t too bad as i said it could have been a whole lot worse and i am sure there are people who are. About the itchy head - mine drives me mad i think it has something to do with the cutting of nerves whist having the craniotomy and as i have a “ busy road” up there i haven’t got the thatch to hide the scar! It has it’s upside though because when people notice how different you are they get a good idea of why! I find it quite funny when talking to people they seem to be transfixed by the scar it’s as if they are talking to it rather than me!!
Oh yeah the itchy head apparently it may never go but my wife knows when i am tired as i rub my scar and scratch my head.
Peace and love
Andy

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Andy/all,

If it helps, I had carpal tunnel release surgery a few years ago and have a scar on the heel of my hand. Part of healing and getting my hand back to normal the advice was that I should irritate the scar, by gently scratching it or subjecting it to rough textures, eg inserting into rice or seeds etc. The idea was to de-sensitise the nerves so that they are accustomed to sensing at the same rate that they used to.

I did it occasionally for a few weeks and I have to say it is basically back to normal. It’s a tiny bit extra-sensitive but much better than it was post op. So doing a bit of gentle stimulation might help your scar as well.

Very best wishes,

Richard