I’ve got a brain AVM that I had embolized this time last year. For some reason, life is just fine today but I’ve spent the last 51 weeks not being convinced that the glue had stuck all of the relevant bits. I’m lucky that I don’t have any deficits but I have had some ongoing symptoms that I’m still checking out.
I first heard a symptom of my AVM in October 2015 and thought I just had wax in my ears. By Jan '16 it was more noisy and I started googling stuff as I really can’t be bothered to get a doctor’s appointment. It really is difficult in our village. I couldn’t find anything worth going to the doctor for. By April '16 it was definitely louder so I did a bit more googling and found pulsatile tinnitus and AVMs. I found this article and was pretty convinced I had the transverse-sigmoid sinus variant. So I went to the doctor pretty quickly. She referred me to ENT at hospital as I’d say her initial diagnosis was tinnitus rather than pulsatile tinnitus and so I had to wait until August for that appointment (not v urgent).
My ENT man was great. He listened to my head and could actually hear the “bruit”, the noise of the blood coursing through from artery into vein (same as I could hear it, to be honest) and he very carefully tried to tell me that I had quite an “interesting” diagnosis (that I’d already worked out!). It did push me off my pedestal, though.
It took 3 months to get an MRI done and to see someone more expert in what it was and what to do and I can tell you that those three months were quite worrisome. I then had to wait a further 4 months to be scheduled for / have an embolization.
Rather than feeling fixed after the embo, I could hear an even louder pulse but the doc was convinced I was all fixed. I’ve spent maybe 6 months getting better since then. Then I felt I was slipping back and went back to the doc again. A further 6 months later and I’m going through scans to see if there is anything still going on there. As of a few weeks ago, I was feeling quite grey about it all. For some reason this week, I feel pretty good. So the whole thing is quite the rollercoaster. You are not alone.
It’s a great thing to be able to connect to people across the world and just talk. The “discovery” stage, which I’d say you’re plumb in the middle of, is pretty scary but actually there are lots of people here with an AVM (obviously) and actually we’ve all got through it. It feels like the worst thing but actually you can get through it. You’ll surprise yourself.
Tell us anything. We can be here for you.