Hey everyone! Been a while since I’ve been here but going for an angiogram in two weeks time to get an update on my Grade 1 dAVF resulting from my first AVM surgery (almost 20 years ago now!!).
Just wondering if anyone has had any radiation treatment for dAVF before? Or any successful treatment at all?
Shauna,
Hello!!
There is definitely someone here who was having treatment for a Cognard Type I DAVF. I shall have to wrack my brain (or use the search thingy) to remember who. I think it was a chap called Ian who was in the North West of the UK but I’ll need to think a bit more.
Otherwise, if you’re looking for DAVF friends, we have more than ever at the moment. I had my DAVF embolised back in 2017, though, I think mine was IIa/b – reflux definitely going on.
Best wishes,
Richard
Ok, so the person I was thinking of was @irelandchris1 who is called Chris and is in the North East!!!
Chris’s story is here:
And here
Other than that, my memory is just fine 
Thank you so much! I’m pretty much in the same boat except for I have no symptoms at all with it. Embolisation is unfortunately not an option for me as there’s a small risk if it went wrong, I would go blind in my left eye 
So surgery or GK radiation are the only two options and GK sounds the best considering everything.
Has your dAVF caused you any trouble since you got your embolisation?
Shauna,
It took me ages to get over the operation. I felt good enough to go back to work after two or three weeks. I got gradually better and better for about six months but then I had a week when I hadn’t felt like I was progressing, followed by a significant dizzy spell. So I got worried enough to go back to the doctor and ask to be checked out. That took a further six months of waiting to get to see the neurosurgeon and a further six months to get the tests and the results of the tests.
By the time I had got to 18 months post op, sometimes I felt fine; sometimes I didn’t and the conclusion from the docs was simply that it takes time to get used to the new pressures, especially when the pressures have so immediately changed. If you have gamma knife, I can’t see a sudden change going on, so I wouldn’t expect you to have a similar experience.
On the initial MRI my DAVF was almost a single connection straight through from an artery on the back of my head into my transverse sinus. As small as I can imagine they ever get, almost. Not a tangle of vessels as is often described. I didn’t see later pictures but I felt like that direct “tap-on” connection from artery to vein developed over the months that I waited for my op, so by the time it got shut off, it felt really quite sudden and the doc said it was not big in terms of centimetres diameter but it was big in terms of volume of blood being diverted per second.
Anyway, today, I feel tippety-top. Allowing myself to believe the doc and just relaxing that the steps forward and a little backward were just to be expected got me there.
There are plenty of folk here who’ve had gamma knife and @John10 recently posted his experience with gamma as a video chat, which you may feel helpful to listen to, though his is not a DAVF. See here: Avm awareness || my story
Very best wishes,
Richard
Second thought… I’ve been looking to see if I know anyone on here who has a DAVF and has had it treated by gamma knife. I can’t find anyone: embolisation does generally seem to be the tool of choice for DAVF, though in the US neurosurgeons seem to like a craniotomy.
Not at Barrow, they are very embolization happy
Which is good, since it makes them more pro at these procedures
I asked about GK, my neuro said that it’s not the go to procedure neither is a craniotomy - they don’t like GK due to how long it takes to actually see results, craniotomy seems to be the next up if embolization fails - but, they use embolization as their 1st course of treatment(s)
At least that’s how it all applied to my dAVF