My AVM was diagnosed principally because I had pulsatile tinnitus and could hear it. I’m not very good at going to the doctor, so I was busy googling until I found something worth going to the doctor for. I found AVMs and pulsatile tinnitus and something called a DAVF and had a slight OMG moment, so then I went to the doc.
I was referred initially to ENT but my consultant recognised what I was talking about instantly and went to find a stethoscope. He plotted all over my head with the stethoscope to see if he could hear the bruit, the pulsatile tinnitus from the outside. He could. So then he confirmed “AVM” and the bottom dropped out of my world in much the same way as yours. That was the end of August 2016.
It took a month to get an “urgent” MRI!! A further month to get it back to the ENT guy and it was November before I was seen in QMC Nottingham neurosurgery department. The assessment was a shunt from an artery into my right transverse sinus and the disruptive flow going in all sorts of directions including along both transverse sinuses and then past my ears. I was given an estimated date of March/April and was eventually seen at the beginning of April 2017. I had a glue embolisation procedure to block up the naughty join between artery and vein (which was then labelled a DAVF).
I didn’t have a bleed and yet it took a long time to get used to the different pressures in the arteries and the veins such that I’d say it took me at least 18 months and much anguish to feel well again.
However, it is now 5 years later and I’m absolutely fine. I have times when my head feels odd (I think any neurosurgery leaves you feeling at least a bit less than 100%) but recently I’ve been telling everyone I feel
I’ll likely have some more occasional odd days but if that’s my adventure, I’m happy.
To be honest, if someone told me I needed a further embolisation, I’d be happy with that, too. When we are first presented with the idea of brain surgery we all get the googlies and it does have risks associated but honestly, I got through the actual operation far better than I anticipated and it is something I feel more able to do today than when I was at your stage.
One of the things I encourage myself with and others on avmsurvivors.org is that we are very lucky to live at a time when these things can be treated and that outcomes are much better than they have ever been.
To discover your issues before they’ve led onto a stroke is just brilliant. Honestly, it is. It still scares the pants off you but it is really a fortunate position to be in and I think that’s why the neuros are rather laid back about it.
I hope this helps.
You’re not alone.