My DAVF has stopped pulsing through my ears (pulsatile tinnitus)… Is this a really bad sign? I desperately want it to be a good sign but everything I read online seems to go for a poor prognosis… Feeling wretched about it, and scared… Its been 2.5 years since diagnosis… Still no angiogram! (awaiting contrast allergy test, UK)…
I think you need to go and nag your GP. Waiting for years is ridiculous.
In terms of “is it a good thing?” I wouldn’t assume so, but it depends on what’s causing it. I would say my pulsatile tinnitus faded towards the end but I was told that I had a possible thrombus in my transverse sinus and I thought that the whooshing was probably the blood pushing past the thrombus. The fading I assumed was perhaps the thrombus dissolving slightly, which could have been a good thing. But you never know.
First GP visit to operation took a year for me and getting a diagnosis once at hospital took a month each time to make individual steps but not even to get as far as an angiogram after 2+ years is ridiculous.
On the plus side, they perhaps don’t think you’re in any danger. On the negative side, they may not be prioritising you properly or have someone who knows what they are dealing with. So, go nag.
Let us know what stages you have been through and roughly when and I’ll help a bit further if I can.
Richard (DAVF Right Occipital)