Thank goodness for this site. And thank you to those willing to listen to my story, sorry if it goes on a bit....
I am newly diagnosed since yesterday by an Ear Nose Throat Specialist yesterday... I had an MRI 4 month ago, after complaining of bilateral pulsatile tinnitus on left side, and occasional headache/numbness to side of face. It's taken them 4 months to even tell me??? So, he casually tells me they have found the cause, and this is great news for me. He then explains I have an abnormal connection between an artery and a vein under my ear. He said it was nothing to worry about but they would refer me to a neuro surgeon, who could answer my questions, do more tests, and agree on appropriate treatment. He said that they may not even treat. He called it an AVM.
So I now, having researched I think it more likely to be a DAVF according to his description. Either way, I am petrified. Recently my pulsatile tinnitus has regressed a little...
I guess my initial questions are:
Can these things go away on their own?? Is this ever heard of? I can see no data.
Are they EVER harmless?
Why would he say that it wasn't urgent? Could he tell that from an MRI? I thought an angio would be needed to assess drainage (according to my research which could be wrong!!)
Are these things IN the brain?? Or can they occur in the neck?Sorry, again, some places that they can occur anywhere, others specify brain.
I read that I have a 4% chance of bleeding/stroke, correct?
My doc told me carry on with normal activities...
Can I still drink wine/alcohol?
Can I still exercise??
Does anyone know if a specialist in UK? I'm considering private as I don't know if I can wait for the referral...
If ANYONE knows the answer to any of these questions, even one, I'd be so grateful. I sit here shaking as I type, I do feel silly as I know there are so many people in a worse place to me. This place is so full of strong people. I had a health scare 2 years ago, docs & everyone thinking I had cancer...turned gratefully to be celiac disease (not great, but manageable)... I thought I was on my way to recovery, recently started lecturing again... Now this... I don't feel fit for work mentally at the moment, and I am not sure how to handle this mentally.
And thank you. Sorry to be so morose and grey, I am normally so happy :-(