Hi all, I was diagnosed with my brain AVM in October 2024. Since then, I’ve had an angiogram and been informed that due to the size and location (4cm, temporal lobe), any form of treatment would be more risky than conservative management.
My symptoms include localised headaches and pulsatile tinnitus. Usually I feel fine but the symptoms flare up when I’ve been overdoing things, like heavy lifting or being stressed out. Trying to keep blood pressure down seems quite a task.
Before my diagnosis, I was a vehicle technician and that’s predominantly what led to the focal aware seizures which made me go to the doctors (luckily my seizures are now under control due to medication). I tried doing just light duties but unfortunately working on cars doesn’t really involve light lifting. Even when not there’s a lot of bending and straining. I see my headaches as warning signs and seeing as I was getting them every day I figured the best decision was to move into something less physical. I tried working in a supermarket but was still coming home with headaches due to the constant walking / bending down to bottom shelves etc. Now I work back in a dealership but doing administrative tasks. Only problem is it’s quite miserable and I’m thinking surely there’s a world where I can have a good balance of enjoyable work and enjoyable home life?
I have changed so many things in my life to manage this condition yet it’s still incredibly frightening to live with. I don’t know a single other person who has this and I often wonder to myself if I’m being dramatic? Can anyone advise me if I’m doing the right thing or give any advice?
I live in Perth, Scotland if anyone is nearby.
Thanks so much for taking time to read this, and I hope you are all keeping well too.
Firstly, welcome to our family. Hopefully we are able to help out a little bit with our experiences. I had a smaller AVM in the left temporal, treated via gamma knife. I was able to slowly build after my bleed to return to my normal level of activity, and GK didn’t set me back too far. Our experiences share a lot, but are completely individualized. I know in some cases a lot of trial and error, and overdoing it is not a great thing as I find my recovery is slower than it once was.
I think you are doing the right things, but the one fact is I found that once aware of my AVM I was far more attuned to it. I paid a lot more attention to things I used to ignore. I think that is normal, and a good thing. Continue communications with your medical folks as there are some meds and natural options to try, that may help. Take Care, John.
I think you’re doing well: you’ve got the right thought process about trying to find a path in life. You’ve not found the right fit yet but keep at it and I’m sure you’ll find something that works for you.
We’ve certainly got a bunch of people in Scotland but I don’t know who is near Perth. I think @Mandaayr is in Ayr and I think she’s also got to just cope with her diagnosis, like you: a number of our @BrainCerebellum members are in the same situation where it is just too close to important stuff that nobody would recommend doing anything proactive. The others I know of are @jap001 in Edinburgh, @MartinB in Glasgow and I don’t remember where @Julie_Std, @brogan01, @Ninja_Kitty and @JoeShmoe are but you are not alone.
It’s great to have you on board, though as John usually says, it’s a shame about the thing that brought us together.
You’re not alone. It does feel like being on a weird island though. I think you came to the right place. I just got here myself and I am awaiting surgery for mine which is super scary for me, but it was some relief to know there was someone else out there that understood the “Oh no” moment of feeling your heart race and wondering if you are about to pay for that. It sounds like you are doing the right thing and evaluating your life properly. If where you are now doesn’t fit, focus some energy on finding something that does, even if retraining is required. I may have facial droop when all of this is done and that means I need a whole new career, so I’m spending some time now thinking about what that might look like. Take your time and take care of you.
Thank you so much for these messages. I agree the reason we have all connected is a massive shame but it’s definitely a bit of weight off my shoulders to learn I’m not completely alone. I’m really grateful for the support you all have already shown.
My life has changed a lot but not all for the worse. It’s been a bit of an eye opener that life it short, so I’ve been doing more things outside of work like enjoying the outdoors, and going on as many holidays as I can. I think I’m just struggling to find that middle ground and the anxiety just seems to build up rapidly.
It’s really nice to know that you’re all managing as well as you can. Again I’m really grateful for your comments
Hi RyanC. Welcome to the little club that noone really wants to be in You’re right, this can be a very lonely condition indeed. Not only is it rare and the population at large have no idea, but also its a bit different for everyone. I’m in the UK too but a long way from you - Buckinghamshire. Medically-speaking I’m in a similar position - untreatable brain AVM, surgeons don’t want to touch it etc. But since I’ve known about it for a long time now (30+ years) I guess I’ve made my peace with it. Thank heavens I don’t often get headaches. But I do have balance/mobility issues, short-term memory problems and get really cross with myself sometimes. Workwise I can entirely understand your frustrations. I’ve always had a ‘desk’ job, but this must be damn hard if you’re used to being physically active. I’m afraid I don’t really know what would make it better for you. But sounds to me like you are doing the right things now
Hi Ryan, welcome to the club. I HAD and AVM that was discovered 8 years ago. It was eventually treated using radiation and obliterated last year. Initially, the Doctors decided to monitor it, but after 2 more seizures and a brain bleed they decided radiation treatment was the best.
Following radiation is had restrictions regarding weight lifting, running, skiing or day kid of exertions. Though I did not have a job that required lifting any kind of weights, there were numerous things in everyday life that require exertions. I could not lift anything over 15 lbs or raise my blood pressure over 140. So I learned to work around it.
Instead of running, I walked…a lot. Then I would dd short intervals of running into my workouts. I stayed away for heavier wrights and asked people for help. I stopped carrying a backpack and bought a roller bag. I worked out with weights of 10 lbs ..but just did more repetitions. I found ways to get around the restrictions without restricting things that I still wanted to do.
You sound like you are making adjustments to accommodate your limitations as well. But only suggestions is too slowly push the limits to see what you can do. I took blood pressure medication to help control it. I bent down to talk to my grand kids instead of lifting them. My friends evened offered to carry my golf clubs from my car to the cart. It amazing how people will help once you explain your situation. But whatever you do, protecting the AVM from bleeding. That was an experience that I do not wish on anyone,
My grandfather was born in Scotland, so maybe we are related. Best of luck to you on your journey,
You’re in a small club but no longer alone. The doc may have said its untreatable but I hope they’ll continue to monitor it and you.
My avm was unknown until it ruptured and I went through ICU during 12 months in hospital.
My point is no bleed or treatment gives you a variety of problems but a rupture screwed my life aged 19 and 30 years later still gives me bad spells.
After getting out of hospital eventually I did a long spell of lifting 10kg weights, which was necessary just to prove I could cope with exercise and higher blood pressures. Don’t rush things and listen when your body wants a break.
I have two AVMs that cannot be operated on, so I understand. I’ve had the diagnosis six years, and I look back and see that I’ve been spending most of that tim -e communicating my needs to people around me, reminding people of my needs, but also adjusting so many parts of my previous lifestyle. Other people forget and we as individuals must always put first our medical situation and needs. It took me some time to get used to that, but the differences you need may be exactly what you need to start enjoying life more. I was lonely as you sound at first, but that changes - try and stay positive and enlarge your life in the ways it needs.
You’re right, this can be a very lonely condition indeed. Not only is it rare and the population at large have no idea, but also its a bit different for everyone. I’m in the UK too but a long way from you - Buckinghamshire. Medically-speaking I’m in a similar position - untreatable brain AVM, surgeons don’t want to touch it etc. But since I’ve known about it for a long time now (30+ years) I guess I’ve made my peace with it. Thank heavens I don’t often get headaches. But I do have balance/mobility issues, short-term memory problems and get really cross with myself sometimes. Workwise I can entirely understand your frustrations. I’ve always had a ‘desk’ job, but this must be damn hard if you’re used to being physically active. I’m afraid I don’t really know what would make it better for you. But sounds to me like you are doing the right things now