Welcome to AVM survivors, I’m glad you found us and I’m sure we can help you a little along the way.
I discovered my AVM because actually I could hear it. I don’t like going to the doctor (it’s a bunch of faff to get an appointment and sometimes inconclusive) so I was busily googling stuff about what I could hear until I found an article by the American Stroke Association about AVMs and DAVFs and stroke and something called “pulsatile tinnitus” (which was what I could hear) and then I went to the doctor!!
She referred me to ENT (I think she was thinking tinnitus rather than pulsatile tinnitus) and it was the ENT consultant who was able to diagnose mine simply by listening to it through a stethoscope: it was that near the surface and that loud!
In the same way as you, the bottom dropped out of my world. I’d self-diagnosed months earlier from that article I’d read but it was the formal confirmation that I had an AVM that knocked me for six. I resolved to tell my wife that my “hearing appointment” was rather more serious when I got home.
It was a Wednesday evening and I went back to work the following morning. I can’t tell you whether I was very effective at work over the subsequent days or weeks or even months but I went back to work.
Now, I wasn’t having migraines. All I had was a whooshing noise in my ears which got steadily louder over time. I did start to feel dizzy (I was getting turbulent blood flow past my ears, so maybe that’s why) and I got to the point of using the lift at work rather than the stairs. My boss wanted me to work from home rather than have me fall over in the office but I reasoned with her that actually I was safer being in the office with people around me than alone at home, unsupervised for 8-10 hours at a time. This was agreed and I stayed at work. I even argued that if it got to the stage that I couldn’t walk safely, I’d rather be with people and in a wheelchair than alone at home.
So that was me.
It shakes you. So be cognisant of that and recognise that it has put you off your stride considerably.
If your doc has encouraged you back to work, do it. I do think that spare time fills up with worry, so if you can do work it will reduce the time you’ve got to worry about it all. Like I say, I felt safer being at work than at home alone simply because if I became ill – with a stroke – it would mean that I might be looked after quicker and do better as a result. I also went on a bit of a campaign to tell people around me that if they found me having stroke-like symptoms to believe it could be stroke and to act accordingly. I got a medical bracelet made up with some info on, including my name, NHS number, my diagnosis and my wife’s mobile phone no, so that if I was found by a stranger anywhere they might dial 999 quicker than otherwise and hospital would know who I was.
The great news is that I got an embolisation about 7 months after that formal diagnosis and that was about 6½ years ago. I’m absolutely fine.
It’s great to have you on board. I’m sure we can talk you through any questions you’ve got.