Temporal Lobe AVM and reflections - my story so far

[MikeyC]

Hello everyone,

I honestly started reading through this channel in July 2025 but only now managed to get the courage and calmness to come here. I’ve read through many of your stories and I’m curious to get a bit more thoughts. I’m very sorry for my long (very long) post.

I’m male, 32yo. My “episode” kicked off in June 2025, when one day I got my first ever migraine that lasted for about 2 days. I then went through a month of visits from one bad and anxious doctor to another with tons of poorly thought out diagnostics. I was initially suspected of meningitis, followed by sinusitis because my symptoms were only the 2 days of headache followed by chronic fatigue that lasted for about 2 weeks. After the two weeks I was just told to “move on with my life” but I just felt it in my gut that it wasn’t that. I had sinusitis in the past, so I found a neurologist who suggested an MRI.

My first MRI showed a mass of about 6cm x 1.5cm and the “craze” begins. The radiologist that did this told me he believes it’s a metastasis from a melanoma (“fun”) and the two neurosurgeons I’m recommended to want to do emergency surgery. I’m based on Romania and I know how much our doctors enjoy doing surgeries even when unnecessary so I reached out to some friends in Canada and France for secondary opinions and I’m called the next day from France to be told to NOT go into surgery. Long story short, I end up being sent to an amazing doctor who performs an Angio that catches my AVM that sits at the base of the temporal lobe, right above the optic nerve, next to the amygdala. It’s a Micro-AVM 10/8mm. Their suggestion was to not touch it, but monitor the brain bleed. I had no symptoms.

I did a follow-up after 3 months and I’ll do another one now in a few weeks, and my latest MRI shows a full retraction of the bleed, with no signs of issues. I saw a few other doctors, and surgery is completely out of discussion, embolization is too because of how small it is. I’ve asked the two GK centres in Romania about an opinion and they said they wouldn’t touch it because they’re afraid they cannot ensure the precision and will now send all my papers to the GK in Hannover since they are the best in Europe, to see what they think.

I’d love to hear from you guys. Is anyone here who decided to do nothing? I’m seriously considering doing nothing unless I have another episode. I’ve had 2 cases with family friends who had similar situations in the 90s and early 2000s with AVMs that bled once and they’ve been fine for the past 30 years, now in their 60s and 80s. I’m also hopeful that medical advancements might actually give me treatment options that will be 100% effective with no side-effects in like 5-10 years.

And finally, I have some thoughts and maybe suggestions for others? I’ve just finished my PhD in Ethics and I’m getting ready to launch a new carrier in coaching now that I finished my neuroscience programme and am finishing my training in psychotherapy, so I definitely went about this in a very “researchy” way. I did a bunch of blood tests and I found a bunch of minor deficiencies (like vitamin B12 and B6, and folic acid, and a few others I can’t remember now). The cardiologist I was working with told me that I should be glad I have an AVM because all my deficiencies were on vitamins that ensure blood vessel and cardiac health, so what is very likely that happened was I had various spikes in blood pressure which, coupled with my degrading blood vessels, triggered the bleed. Alternatively, I would have probably had a stroke or a massive haemorrhage in 2-5 years and would have died on the spot. I’m very frustrated with how many doctors were dismissive about connecting dots, and how I had to go through about 15 international doctors to get to a point where the AVM is not the main problem, but my lifestyle is. AVMs are usually congenital, so I probably had mine for a good chunk of my life, and it caused no issues. But in between two jobs, friends, the occasional party, stress, eating healthy, taking care of family, etc., I think I just overstretched a bit, and my body started giving up. So I’m actually wondering how much of our AVMs breaking is actually just an early sign that we need to calm our lives down. And then, reading all your stories, I realise how lucky I was to get out of this first bleed unscratched, and I’m wondering if that’s just going to my head and that’s why I want to do nothing about it.

[DickD]

Hi @MikeyC! Welcome!

It’s great that you found us and even better that you dared to join! By expressing your worries and working those through, I am sure you’ll help some of the other people who busily look at the website but don’t ever sign up.

Are there any others who’ve been advised “don’t touch it!?” Yes. Do they like that as an option? Well, it depends: you definitely don’t want to be doing any kind of intervention that you’ll regret, but a lot of people worry about the thing still being there. Somehow you need to find the right balance for you and be comfortable with it. It sounds like you are, which is great. I’m sure calming your life down will help and when I was pre-op, I stopped drinking coffee, eating chocolate, drinking alcohol – all things that can spike your blood pressure. I felt that it was the one thing I had control over that would help me while I waited for surgery. I was fortunate to have an embolization in April 2017 after 7-12 months of waiting (depending on when you start counting!)

I get the impression from reading the advice that others here have received which I believe is that a second bleed carries greater likelihood than a first bleed, so I believe the statistics might be against you but I don’t know where to point you for a definitive answer. If intervention with today’s technology is not advised, then it matters not what the likelihood is you’ll need to wait for that second bleed and the doctors will sort you out each time. You may gain some deficits from surgery of either kind but at the point you’re in trouble, those may be worth it rather than to proactively choose danger now. It’s a tough position to be in but you are not alone.

We have at least two other patients who live in Romania, one of whose names I can’t remember, and the person who is recently active from Romania is somewhat dissatisfied with the progress of their diagnosis in a similar way to you, so reaching out to places like Hanover is a great idea.

Welcome! Ask anything you like! This is what we are here for: to stand with you as you go through this stuff.

Richard

[MikeyC]

Hey all,

I have been struggling to find out more from either doctors or around the web about going on with your life when it comes to physical activities (working out, swimming, doing other sports, sex?, and so on). Maybe I didn’t look in the right place. The only advise I got, from my cardiologist, was to “act like I had a stroke or a heart attack” when going back into activities, and to remember to breath and take things slow. But this was soo general, I have no idea where to start, and I honestly miss doing sports. Any of you have any suggestions, or can share from your experiences?

After my diagnosis, I feel like it took me almost half a year to get over my anxiety that I’ll just … self-implode one day, but that might have been only because I had no long-lasting issues. I honestly feel bad even asking this given how long and painful most of your recoveries were from what I read around here. Anyway, looking forward to your thoughts.

[DickD]

The key advice we’re given is “not to strain” in any way: it’s basically about not spiking your blood pressure.

Walking and light cardio is good for you, so that is recommended. We do seem to me to have a high count of people who had a bleed in the gym, pressing big weights: I think pushing weights in the gym is ill advised, certainly anything where you’d be straining.

I’m sure others will offer the advice they’ve been given.

[MikeyC]

Hello Richard, and thank you for your message! Yes, I’ve read most if not all the research. For me, what is unclear, and clearly unstudied, is around what lifestyles and behaviours actually increase the likelihood of a bleed and a rebleed. All the doctors I talked to said that it’s clearly not the case that we spontaneously combust and veins just randomly blow up. So there is probably just a lot we don’t know. As you said you did too, I gave up alcohol and the activities that could make my blood pressure spike. I’m a bit more careful at what I eat, and I’m trying to switch towards a healthy lifestyle in terms of food and sleep and general activities. I’ll be checking my vitamins balance every year and keep that stress and cortisol down. Overall, I think the dangers I’m in are very very low right now, and monitoring it sounds like a sensible approach. Worrying about things that you can’t control never helped anyone … on the contrary it usually just makes things worse.

From what I read around here, most people discover pretty large AVMs that are also pretty unstable or provide quite high risks., so I get why interventions are always the better choice. I think I’m in a rather rarer situation, where my AVM cannot even be identified on an MRI because it’s so small. They could only see it via Angio. Of course I’d love to be done with this and over it, but we’ll see how it goes. Due to the potential higher risks of a second bleed, we went for treatments that ensure veins health and support a healthier cardiac system.

I’ll keep you guys up to date, and I think just being around here helps a lot to be honest. Reading through so many stories where people felt alone in this is very relatable. I’m happy I found you.

[MikeyC]

I wasn’t aware we had that many people who had bleeds in the gym. But yeah, I get it, when it comes to big weights though.

I’m curious how people went about it and what worked for them. I have a good colleague at work who is retiring this month, and he’s been working out 5 times a week after two heart attacks about 15 years ago, but he had some great doctors where he’s from, who gave him training schedules, and they’re still monitoring him periodically, and he’s basically monitoring his blood pressure after each set, and whenever he gets to 170/100 he takes 15 minute breaks. Which I thought was amazing! But then I’m not that big of a gym goer. So, yes, trying to get more thoughts from others and I know there are quite a few people who discussed various types of sports in the past. I’m honestly started looking at things like Pilates or even some non-intensive callisthenics maybe. Generally just things that can keep the blood pressure and heart rate in normal intervals but still counts as movement.

[Lulu1]

Hi Mikey. Welcome to the site. You’re in good company I hope. Sounds to me like you’re being very brave and doing all the right things. Certainly research plays a massive part in all of this. But so does personal choice. This AVM business is a complex one and we’re all different. So you have to do what you consider is the right thing for you. My own AVM is deep down in the cerebellum area of my brain. I found out about it when I was in my late 20s, but yes it is congenital. About 15 years earlier mine caused a secondary condition (hydrocephalus) which is treated with a Shunt. Later on I found there was a direct link between the two. Surgery has never been an option for me and the leading Gamma Knife centre here in the UK won’t touch me either. Apparently the AVM is far too close to essential structures and the chance to success is very low anyway. Fortunately I’m generally well. As for sporting activities I think Richard has already given you some great advice. I have been advised against lifting weights and doing anything that increases head pressure such as running and scuba diving. Around 10 years ago I had a bit of a funny turn during a period of time where (looking back) I wasn’t eating or sleeping enough. Nowadays I make sure I get plenty of both. Also stress isn’t good, although avoiding it is a little easier said than done sometimes.

All the best

Lulu

[Amareea]

Buna, sunt din Romania si eu
Putem discuta?

[MikeyC]

Thank you @Lulu1 ! I’m glad to hear you are okay and by the sounds of it, you had a full and happy life overall. This really gives me hope! Thank you for the kind words, it really helped. The fact that you went through giving birth twice with this sounds extraordinary. I guess I’ll take you as an example moving forward for what a balanced life does to us. Thank you again!