Another Cured Whoosher: Brain Dural Arteriovenous Fistula (BDAVF)
The latest Cured Whoosher story from "Liz" is another inspiring (albeit frustrating!) tale of a patient who was
told to "live with it," all while the evasive cause of her pulsatile tinnitus, brain dural arteriovenous fistula (BDAVF), could have caused a stroke, or worse. Her persistence was rewarded by answers and a procedure that cured her of the whoosh.
Reading other whoosher stories helped her throughout the process, so she wanted to give back and tell her story so it, too,
may help other whooshers.
This will be added to our Cured Whooshers page, where we keep links to similar stories of persistence and varying underlying causes. We actually have several other
stories from whooshers diagnosed with BDAVF. Links to medical reports may be found there, too. So, doctors: read
Liz, good for you for being your best advocate! Enjoy the silence.
In January 2013, a couple
days after a dental cleaning appointment, I started having a severe headache, jaw ache and whooshing in my left ear.
It literally sounded like a 'whoosh, whoosh, whoosh' noise which was in time to my heartbeat. It continued 24/7 and
kept getting worse. I had been suffering with cold and sinus issues for a couple of weeks, saw my primary physician
and got antibiotics. Didn't get better. In February 2013, researching on the Internet brought me to Whooshers.com and that page (and the links) got me started thinking that with my symptoms that it might be pulsatile tinnitus. I read it
might be related to high blood pressure, neck pain, Temporomandibular Joint Disorder (TMJ), all kinds
of things. I had high blood pressure so I checked it but could find no correlation to the whooshing. My sleep
was big time disrupted. Saw my dentist re TMJ. Saw an ENT specialist who said ears were clear but could be TMJ.
From the beginning, I was able to shut the whoosh off by pressing on the back of my head behind my left ear, but then
my head would hurt. I had a physical and nothing showed up. I gave up Aleve. I tried heat, ice, neck exercises,
relaxation imagery for TMJ, watched my posture, tried white noise to sleep, tried a cotton ball in my ear, limited my chewing
of hard stuff, essential oils and tried massage... nothing worked or really helped for long.
In April of 2013,
I met with a second ENT specialist who ordered a hearing test which showed no problems with hearing - a good thing but no
answer for whooshing. He ordered an MRI to rule out a blood vessel tumor. This ENT had actually heard of pulsatile tinnitus
(but not my primary or the first ENT). My MRI showed blood vessels all good but I was sent me to physical therapy for
my TMJ which did help a bit in at least managing the neck and jaw pain. Apparently I carry a lot of tension in my neck
The more I read on Whooshers.com the more nervous I became. I was then scheduled (per my ENT) for an ultrasound Doppler which also returned clear but found
a thyroid nodule. Next up was a MRI/MRA/MRV, and I was hopeful because these were all terms I had read about. Meanwhile
the whoosh continued 24/7 and drove me completely bonkers!
During one of my sleepless nights I had read it was
possible to record my whoosh and I was able to do that (can't remember how but finally friends and family could hear what
I had been hearing). I played the whoosh for the second ENT referral and he said could hear it a little on my recording.
I kept pushing my primary about further testing of my thyroid nodule because I read that too can cause
pulsatile tinnitus... this whole thing was quite a frustrating process to this point. Through this whooshing noise, I kept
getting sick with infections, low temperatures, extreme debilitating fatigue, just general feeling like crap all the time.
In January of this year (2014), The ENT found a neurosurgeon for me to talk to about my symptoms. I met him in February.
The neurosurgeon heard my whoosh (bruit) (woohoo), had heard of Whooshers.com, had heard of pulsatile tinnitus
and he could actually feel it (trill). He had reviewed all my scans and said he was fairly sure it was a dural arteriovenous
fistula but didn't think I needed to repeat all the scans, just do the gold standard test of angiogram. Did I mention
when I finally saw the neurosurgeon's card it said "neurointerventionalist!!!! I knew from Whooshers.com that was the
doctor that might be able to figure this out and he did!!!!!!! And he had heard the whoosh too...what a relief that was!!!
Backtracking a little, a few weeks prior to my procedure my head had begun to hurt a lot and every little tiny touch
made my head hurt worse and worse. I was getting more worried and not sure what the heck was going on but was glad I already
had an appointment scheduled.
On April 22, I had my diagnostic angiogram and after 4 plus hours, they were able
to find and fix my fistula with an onyx embolization - YAHOO!!!! The neurosurgeons (I had two neurosurgeons work
on me) said my situation was a textbook case for BDAVF. I spent the night in the hospital and woke up with NO whoosh!!!!
From what I understood they had found a big mess of criss-crossed arteries and veins and blood flow starting to go backwards
which was probably why I was feeling worse. If it hadn't been found and fixed it could have possibly led to a brain
bleed or stroke.
I am soooo grateful to them and thankful and blessed to have no more whoosh. The relentless24/7
whoosh was rough and 'peace' can not be underestimated. I don't know how everyone can continue longer than I had
but it was so helpful to read everyone's stories on here....a little scary to read sometimes but helpful overall :-))) and
it was hard for me to do but you just have to keep pushing for answers. I wish nothing but cured whooshers for everyone on
Note: It's now almost 3 months after my procedure and I am still whoosh free. I was told I would lose
my hair in that left back quadrant of my head and I did. Still waiting for it to grow back lol but that's a minor issue
compared to what could have happened. I will have a follow-up angiogram in another 3 months just to make sure everything
For more information about brain dural arteriovenous fistula, see this link at neuroangio.org.