I was diagnosed with a uterine AVM 2 weeks ago. I’ve been reading all I can since then and noticed a link between AVMs and tinnitus.
I have had gushing in my ears for a while but it noticeably increased and became pulsatile around 3 months ago, alongside the onset of my other symptoms. It could just be a coincidence but I’d be interested to know if anyone else experienced tinnitus associated with an AVM located outside the brain?
Thanks in advance
Welcome to AVM survivors! It is great you found us.
I can’t say I’ve heard of something like a pelvic or uterine AVM provoking pulsatile tinnitus. The one thought I have in my mind is that actually you could have both a pelvic AVM and a brain AVM. I know: that’s a horrible thought but it is possible and we do have others with multiple AVMs.
I had a dural arteriovenous fistula which was gushing into my right transverse sinus (the TVSs run horizontally across the back of your head) so I know what [my] pulsatile tinnitus sounded like. It started off quite quiet and initially I would describe it as like liquid squirting out of a pipe every second. It didn’t sound like a pulse because there was no double-thump. But just a pssh… pssh… pssh… sound in time with my heartbeat. A slightly rough sound, exactly like liquid squirting through a tear in something.
Over time it got louder, to the point that I described it as being like the washing machine on pump-out. Every second. All day and all night!
In my case, I could hear it because that disrupted, turbulent flow was in my right transverse sinus and it became strong enough to pump rough flow blood both ways along my transverse sinuses and I could hear it in both ears as the TVS becomes the sigmoid sinuses as they pass each ear.
So… I’m thinking either you’ve got a hell of an adverse flow going on down in your pelvis if you can hear it up top, or it is wholly possible that you might have more than one thing going on.
Does your pulsatile tinnitus sound similar to mine or is it more like a normal heartbeat sound with the double thump of a heartbeat?
Yeah like @DickD said, you can develop or already have a brain AVM when you have an AVM elsewhere so I would definitely get a brain scan. I have a pelvic, butt,hip AVM and I have been recommended to get a brain CTA every 2-3 years to check for signs of an AVM.
I do think a large pelvic AVM has an effect on your heart, so could still be linked and it’s interesting to understand if you’re really hearing a pulsatile tinnitus rather than something else.