Hey everyone, been lurking here for a bit and figured I should finally make an intro given things are starting to move quickly for me. I’m 28 years old, male, and in Dec 2024 I developed a persistent headache that wouldn’t go away and went to the ER for it. They gave me a CT and MRI that diagnosed me with an AVM, albeit one that they didn’t think was big enough to be causing my headache. My AVM is small, about 1.1 cm in my right frontal lobe, Grade 2 because it’s near my motor cortex.
ER recommended me to neurosurgery and I met a neurosurgeon who got me an angiogram. That backed up the MRI diagnosis of AVM and cleared me of any aneurisms or stenosis or any other concerns. Both the MRI and angiogram detected no evidence of a prior bleed, I’ve never had any seizures, which I guess makes me “lucky” in that I found it before a rupture. Next up over the next two weeks I have an fMRI to see if the AVM is close enough to potentially cause paralysis concerns for operation, and then an MRA to assess blood flow of AVM.
Doctor says I’d be a great candidate for surgery because my AVM is superficial and doesn’t have deep drainage, she doesn’t think I’d even need embolization. I hate the idea of brain surgery and am leaning towards GK, but I know that there are horror stories for both. I’m curious if there’s anyone else who has had a similar situation as me (small unruptured AVM in frontal lobe near motor cortex) and what you chose to do. Also welcome anyone else’s thoughts and recommendations regardless of situation. Sucks that no treatment comes without risk but that’s the hand life has dealt us.
Welcome! I’ll let others answer your questions but it is great that you found us and it is important to talk about these fears. I think it helps remarkably to be able to find a bunch of people who’ve been through this stuff and help to rationalise which way you want to go.
If both options are presented equally by the neuro, then I guess it can come down to your preference but my general view is that if there is a strong preference from the experts, it’s good to follow that preference.
If a second opinion could be of value, you can get a “remote” second opinion from most, maybe all, of the major neurosurgery practices in the US, from as little as $100.
Yeah I’ve heard about Barrows, planning on sending in my angiogram and fMRI to them once those are done. Wish it was easier to get those docs from the hospital, seems like I can’t request them digitally which is a pain.
I’m definitely struggling with fear. Reading how some people were perfectly healthy and were just sitting in bed when their AVMs ruptured is terrifying. Makes me feel helpless and like there’s nothing I can do. I live on my own so I’m not optimistic about my chances if I do have a rupture, seems like the one common part of any story about anyone who survives a rupture is that someone else finds them and gets them treatment in time. For that reason I see the appeal of surgery, getting it out and done with but the chance of paralysis is a huge concern for me.
Are you still working and are you still getting to work?
I worried about similar things. I’m married and at the time had others at home but my work wanted me to work from home initially because my AVM was making me dizzy. Consequently, I couldn’t drive and they didn’t want me falling down their stairs but I made the case that I was a lot safer being at work, among people, than being left alone at home all day while family were at work or school. So I persuaded them to let me be at work and I used the bus to get to and fro and the elevator to go up & down stairs.
One of the other things I did that I felt helped me feel that I was doing what I could to help myself was to get a medical alert bracelet. I bought some silicone ones that were comfortable to be on 24h a day and depending on whether I wanted to actively have a conversation with people around me about it, I wore the red one, or if I wanted to be more subtle, I wore a navy blue one.
Where I worked, we had a very open culture about safety and so I brought my personal safety into those conversations and educated people about stroke slightly. The red band often led on to people daring to be open with me and ask what it was for. I thought it very helpful to be open about it and an improvement in my chances if I was taken ill in work or in public.
That’s good thinking! Yes I am still employed currently and am able to WFH. I’m a quiet, reserved person by nature (part of why I took so long to post) and don’t like sharing personal details about myself. But in this case it might be necessary so I’ll reach out to a few of my co-workers that I’m on friendly terms with to let them know.
Good. These are extraordinary times, so call for extraordinary measures!
If I’m honest with you, if there are friends and neighbours who you could turn to to check in on you (and we know this is something that we say that we should do with the older folk in our communities) I’d say be radical there, too, and tell one or two of them that you’re not wholly safe and you’d really appreciate a phone call or a WhatsApp as often as they think of you.
Now, on the other front, just because you know it is there doesn’t mean it is going to go pop! If you’ve got a standard issue AVM, it’ll have been there all your life and there’s no real reason why it should go pop just because you now know about it. So far as I understand it, most AVMs are congenital, meaning it was part of the set of cards you were dealt in the womb, part of the magic of how you were knitted together. You’ve had it that long. It’s not a new thing and likely it’s not developing rapidly. That you now know that it is there just means you’re starting to do something about it.
The other things you can do as self-help things are to cut out things life coffee, caffeine, chocolate, alcohol, smoking or lugging heavy weights or straining of any kind. Each of these things can spike your blood pressure, so by avoiding them, you’re doing another thing to reduce your risk. Once you get operated on, you can go back to a normal life but as a positive action you can take while you wait, you can do these.
I’ve pretty much stuck to caffeine-free post op but i have bought a bunch of beers today
Hope some of the things I share help you. Its not easy, so be generous with yourself and allow yourself to do some things to help. Hopefully others will offer some ideas as well.
My AVM ruptured in my mother’s womb, then 14 more times over the next 15, almost 16 years. I’m not sure I wouldn’t think it over, before contemplating surgery.
Surgery and recovery can definitely put a gigantic stumbling stone in your life’s path.
