I know exactly how you feel, as I expect a number of us do.
I had a dural arteriovenous fistula (“DAVF”) near my right transverse sinus, so on the surface of my brain, mid way up the back of my head, right of centre. I could hear the blood whooshing into my transverse sinuses and they then pass by your ears as the sigmoid sinuses. I first discovered it in about Sep 2015 as a quiet noise. By the following year it was getting louder. I finally discovered an article on the internet that indicated to me DAVF and went to see my doctor.
It took until Aug 2016 to see an ENT specialist who immediately realised it was not in his speciality and he referred me for an MRI and then to neurosurgery. Every step of the way took at least a month and I worried my way through every single one of those months, in exactly the same way as I expect you are. If you want to see me going through the same stuff, have a read here. The timestamp for each entry is shown to the right of each post.
By Jan 2017, I was starting to feel worse each week: I felt my DAVF was getting more extensive: and I had to try to keep myself sane until April 2017 when I eventually went for the operation. I had an embolisation.
So… how can we help you? I think the main thing is that this is probably more survivable, more gettable-throughable than you’re giving yourself credit for. It’s a challenge to us. It’s the first time you’ve probably ever worried about your health. So I think my advice is to learn a little bit about it, about the operation. Read stories of others here. I think you’ll find a bunch of stories that will encourage you and a bunch that frighten you to bits, so it’s a fine line!! Try to walk away with the ones that give you more positivity than you have today. There’s every reason to be positive. Honestly there is.
Meanwhile, I decided to try to keep my mind busy. An empty mind has too much time to think about negative things. So find something to do to keep you busy. Ideally, find something that challenges your mind, so you have to actually think about whatever project it is. But do something you fancy doing.
Howzat?
We’ve been through this stuff and got out the other side. So there’s everything to be positive about.
Tell us what you know about your AVM and ask anything you like. It’s what we’re here for.
Very best wishes,
Richard