"Just forget about it" said my neuro calmy. A reflection on untreatable AVMs and what comes next

General
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I have an 8cm grade 8 brain AVM in the left side of my head. Inoperable and untreatable in any way. From here in my country to Barrow, they all agree. No embo, radiation or gamma knife are even an option.

I called her Annie. “Annie came here one day, she spread roots. Took everything I loved and chained me.”

But you know what… Is not that bad. My neuro, a really skilled man on the topic, said Annie is pretty stable. A really nice drainage, and he told me bigger malformations are less prone to bleed. He also told me that in all his years of dealing with AVMs, he never saw any case like mine bled. Except for this old guy, but oc, he was a heavy smoker.

And yeah, it kinda makes sense. I started having symptoms at age 6, and even after that, Annie resisted lots of sports clubs, cruel PE teachers, panic attacks, tons and tons of heavy alcohol and an addiction to substances I won’t mention here. All like a champion.

Now… I was discharged by my neuro. “You are not gonna bleed unless you go back to extreme sports or drugs. So chill out. Just forget about it and live your life.”

Just forget about it… It was so simple and at the same time fascinating. But what can I say, he is right. There is nothing to do and sooner or later she is gonna kill me so… why not go back to normal. I’m tired of this paranoia I have all the time, I’m tired of feeling like a frustrated version of myself. NO. I’m gonna run in the mornings. I’m gonna work out and tattoo all my feelings on my gains. I’m gonna go out to concerts and dance to the tones of old goth songs. I’m gonna live the open sex life I’d always loved and make love with everyone I want in every way I want. And for the most part, I’ll be the woman I was always denied and enjoy every single second of it.

I didn’t come to this world to have my only life taken away cuz “I was born with a delicate brain”. Even if I only live for five more years or less. It’s better than being in my 40s and thinking of all the things I missed for always being afraid. And then die from a stroke while doing it, alone on my sofa. I gotta say I feel pretty lucky my AVM is this fair, and yes I’m afraid of dying or ending severely disabled. But the money for my rehab is not gonna fall from the sky so I’m gonna go out there and work harder than ever and assure myself a life I feel fulfilled about, Even if my job kills me, at least I’m enjoying it.

At the end of the day, this thing gave me more than I could have before I met her. She gave me responsibility, a sense of health and future, discipline, and the ability of being grateful for every moment I’m alive. From the good ones to the bad ones.

So thank you Annie. I’d beat your a$$ out if you weren’t inside my body. But still, thank you :3

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Hmmm, yea, great in theory and I’d love to be able to, but I keep getting these constant reminders (symptoms) to beat me into submission. Just when I think 'Ya, I got this thing beat…" It pops up, king hits me, dropping me to my knees. So, I have to listen and try to manage around it all the best way I can.

My wife is a great one for being overly cautious sometimes and I’ve often said to her “You could walk out the front door tomorrow and get hit by a bus, so live for the NOW” We never know when that ‘bus’ is coming, but wrapping yourself in cottonwool, just in case is a waste of a life. I got stuck in that whirlpool of ‘What if ‘x’ happens? What if ‘y’ happens?’ type cycle before, but it doesn’t get us anywhere. Before covid we had the opportunity to travel, she was all ‘ohh but, but, but…’ Nope, I wasn’t having it. We went to the UK a couple of times and a trip around Europe. She tells me she’s really pleased we did it, but she wouldn’t have done it, had I not pushed her in that direction.

I think the best piece of advice I was given was ‘don’t be alarmed, just be aware’. My body will often give me precursor, a warning as such. I can keep pushing myself to complete a task, but I know there is always a consequence, a price to pay for pushing past that ‘warning’ (usually in agony). What I have to do is weigh up the price I’ll pay vs the reward for completing the task.

Now, please don’t get me wrong here, it took me a long time to actually get to that point of acceptance. I’ve required a few neurosurgeries and after the first couple I was so, so scared. Any bump or bang… OMG …it was like walking on eggshells, just waiting for the next one to break. But after the third surgery I came to some sort of terms to where I could manage ‘better’. I’m not happy about it all but… here we are. I can’t change it. So, I have to accept it all.

I’m not going to say ‘Thank you’ to it, I still curse it daily, but I can’t change it. But in saying that I do understand your sentiment.

Merl from the Modsupport Team

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@qqquinn

The way I look upon life is that we all get one chance to live our lives the way we want to live them. When we have an AVM, it can alter some of what we are able to do but you still need to get to the end of it and be happy that you lived your life the way you wanted to or achieved some of the things you wanted to achieve.

When I was a young man, I remember using sunbeds in the run up to the summer months each year. I’m quite pale-skinned and wanted to have at least some colour as I started my beach holiday, so I used sunbeds for several weeks in the lead up to my holidays, for at least a handful of years. As an older man, I can see that my skin has changed with age and I’ve got quite a lot of seborrhoeic keratoses, some of which look very dubious (and I recently asked about one of them at the doctor’s, again). I must have an increased risk of skin cancer from having fair skin, from having used a sunbed but you know what? I’m determined not to rue those actions of my youth. I did them, I was told about the risks at the time but I got confidence from those actions: it changed how I lived as a young person to be that bit more confident on a beach, who I met and some of the experiences I had. I can’t rue all of that! That was life lived!

Now, if I do get skin cancer in old age, it’s possible that those choices as a young man will appear poor but I’m determined like you that I can’t rue them. They were part of my life lived.

I’ll let you know how I get on!

Very best wishes,

Richard

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thanks for the understanding :3

and yeah, it’s really easy to forget about a time bomb inside ur brain when u are not the one who has it but still. I’ll never get anywhere if I start worrying about what could happen before everything I do.

And the price? Yeah. Taking your bp for a while up to achieve something I need. But what is the reward? A better oportunity on something, an advance in ur career, a memory you will always appreciate, happiness?

In my case is not a bus but a man with a gun. I already found him walking in a dark alley. I’ll just keep walking till he decides to shoot

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It sounds like your AVM is stable and worth remembering that most AVMs never bleed and are found (if at all) as incidental findings at autopsy. So you are right to forget about it and get on with your life. It’s probably going to give you no trouble, so it’s a waste of time worrying about it. My AVM did bleed, which was how I was diagnosed, but aside from the early months where I felt like I was walking on eggshells I then didn’t worry much because the odds of another bleed in any given year were low. The next five years were the best of my life so far because I didn’t stress, but I did have the added appreciation of life and how lucky I had been. So I totally agree with your outlook here. Enjoy your life, and don’t give your AVM too much airtime. It would be a shame to reach 90 and look back at all the time spent worrying about something that never happened :joy: