Hi,
Yes, I’m in the UK. My precise diagnosis (as precise as it got) was a DAVF flowing into my right transverse sinus with some diminution of the right TVS and reflux flow into those external veins.
As you may have read, I had a single PHIL glue embolization in April 2017 to close the thing.
I got better through 2017 but in October was feeling I was not making progress. Then beginning of Nov I had a week of noticeable dizziness:
I have had an angiogram in March this year, an MRI in April and a repeat MRI in June. I had positive feedback from the interventional radiologist re the angiogram (checked both sides of my head and nothing looks wrong) but I’ve still not had any output from the MRIs. I haven’t chased those yet and its driving my wife a bit mad. I just thought I’d see how long it takes for them to tell me if I don’t chase it. Answer = far too long.
I have to say that after the feedback from the angiogram, I’ve relaxed a bit maybe. I don’t always have symptoms and they are definitely not significant, so it is easy to just carry on. However, in the last week, and occasionally, I still feel I’ve got an extraneous pulse going on and sometimes my head feels odd on top or pressured, which I why I’m still getting checked out. Overall, I am definitely MUCH MUCH better than March or even April or May last year. It was definitely worth the op and I am sure without it, I could be in real danger by now.
The angiogram is undoubtedly the right way to see exactly what the anomaly is. An MRI I think is good for seeing that there is an issue of some kind in location x in your brain, but its like looking at an old TV with lots of interference on. The angiogram is a way of illuminating the flow of blood in the arteries and seeing exactly how it is flowing. It carries some risk but if your AVM is giving you issues and really needs intervention, then it is the right way to let the doctors decide on the right treatment. I am sure it is important for you to have that sort of scan.
Hope this helps,
Richard