I wanted to post this because VV-AVF is rare, so I want there to be something on here.
I was diagnosed in August 2017 with Vertebrovertebral Arteriovenous Fistula of C1, C2 after 2 yrs of brut, very loud pulse whoosing in my head. When asked which side I would say left because it started there and was louder there but I could hear it on both sides and inside my entire head really, because of how loud it was. Dr’s did not believe it was dual sided until I was finally diagnosed.
It took an incredible amount of time and 3 specialists to dx and get a plan for surgery. I was terrified by what may change, not change, all of the possible unknowns. Then I woke up in recovery and the noise in my head was gone, it was finally quiet.
I’ve had a number of positive changes go on since the surgery. It seems to have been impacting my taste, smell, headaches, migraines, body pain-everywhere, mental health/wellness. I doublt my neurosurgeon would believe the wide ranging impacts but I know what I have experienced and those around me witness the new me. Living with much less pain.
As I look back throughout my life I wonder if I was born with this or did some injury happen? I know I tumbled down basement stairs as an infant. I know from the things which have cleared up that I have been dealing with this since I was 10 or 11 at least. So I am left to wonder, what happened?