Hi @Litch! Great to have you join us!
I discovered my AVM (specifically a Dural AV Fistula flowing into my right transverse sinus) because of the pulsatile tinnitus. I was intrigued by this faint sound I could hear. Over time, it got louder and I started googling to see if there was anything worth going to the doctor about. Finally, I discovered AVMs and fistulas and pulsatile tinnitus and had my “oh sh*t” moment. I went to the doc.
My pulsatile tinnitus was audible (“auscultatable”) extracranially and I was formally diagnosed by an ENT consultant in August 2016. He used a stethoscope to plot over the outside of my head until he landed on the spot where the artery was chucking blood into the traverse sinus. He just listened to it for quite some time.
Mine was sufficiently gushy to flow both ways along the TVS and I could hear the disruptive flow in both ears. Over time, it seemed to develop and felt like it was adversely affecting the flow in my sagittal sinus and (I assume) my short sinus and I think it was those that led on to me starting to feel a bit dizzy. Since my AVM was a single shunt (it appeared on MRI as a single white circle of high-flow blood, seen in cross-section) and into these sinuses, very much in the surface of the brain, it was categorised as a DAVF. The assessment criteria for DAVFs is based on the Cognard scale (different from regular brain AVMs) and a type I is generally considered unnecessary to treat. Mine was something like a IIa or IIb with an amount of “reflux” or “retrograde” (reverse) flow going on, pushing the normal return flow blood the wrong way, and like I say, making me feel increasingly odd, “dizzy”. I’d say it was more a weirdness than straight dizziness – different from something that is impacting on the balance in one’s ear.
I had mine closed off with glue, injected via a very fine tube, a catheter, inserted at my groin and navigated up to the right place to bung some glue in the right place and get my blood pressures all back in the right places and I’m still doing fine today.
If you’ve got any questions, fire away. I’m intrigued to know if you’re having any more investigations – using a catheter to inject contrast material whilst under x-ray (a process called a catheter angiogram) to illuminate the vessels and observe the flows is usually the top-notch way to see what’s going on inside.
Welcome!
Richard