Pulsatile Tinnitus: The Journey to Silence in my Head
“It’s gone. The sound is gone.” I heard myself say as I woke from the anesthesia. Despite the alarms and monitors of the recovery unit, all I heard was the silence.
It’s December 2015. I was halfway through my uneventful first pregnancy when the sound started. On an otherwise unassuming winter day, I woke up to suddenly hearing my heartbeat in my left ear. A quick Google search told me this likely was pulsatile tinnitus (“PT”). And as the internet goes, the suggestions of what caused it ranged from brain tumors to nothing at all. I knew better. This noise, that ironically sounded exactly like fetal heartones on an ultrasound but to my own heart rate, would come to be known as “my whoosh.”
I made a quick trip to the local urgent care who said I likely had an upper respiratory infection and sent me on my way with some Flonase. I then mentioned it to my OBGYN at my next appointment who said it was likely just due to increased blood flow during pregnancy and would probably go away after delivery. I accepted these answers and distracted myself with preparing for my first baby.
My delivery came and went and I gave birth to a healthy baby boy in April 2016. In those crazy first few months of motherhood, the whoosh seemed to have disappeared. Looking back, it’s likely it was simply drowned out by all the other noise around me as it came roaring back later that same year. And this time it seemed like it was here to stay.
Queue another round of Google searches. This time led me to the Whooshers and down the proverbial rabbit hole. Turns out there were many like me searching for answers for the sound in their head to no avail. And on top of it, most doctors lumped pulsatile tinnitus in with regular “ringing” tinnitus and easily dismissed the symptom. I could also quiet the sound by pressing on the left side of my neck, the same side as the whooshing. I was determined to figure it out. The fire was lit.
In early 2017, I reached out to my PCP at the time who was part of one of the major teaching hospital systems here in Pittsburgh, PA. She said that normally nothing can be done for “tinnitus” but she would order a brain MRI and also sent me to an ENT. Naturally, the MRI was “unremarkable” but my PCP did consult a neuro radiologist who suggested I needed a brain MRA — which is an MR Angigoram — a test that looks at the arteries of the brain. Again, unremarkable. ENT visit was equally unproductive. Hearing was fine and ear was functioning properly. “Sorry, it’s just tinnitus.” The fire was put out for the time being.
As my son celebrated his first birthday and grew into a toddler, I started to think that we would eventually want another baby. But could I bring another baby into this world safely with PT? Back to Google. This time on to clinical literature and medical journals.
Alphabet soup terms like DAVF (Dural Arteriovenous Fistula), AVM (Arteriovenous Malformation), IIH(Idiopathic Intercranial Hypertension) and VSS (Venous Sinus Stenosis) flooded my screen. “Pulsatile tinnitus usually has a physical cause as opposed to tinnitus.” “Pulsatile tinnitus is usually vascular in nature.” This information was mainly written in articles by neurosurgeons. Neurosurgery. That’s it, that’s the specialty I needed. The spark I needed.
It’s November 2017. Armed with extensive Google research, I reached out directly to the head of Neurosurgery at the same major teaching hospital system where I also saw my PCP and ENT. I was convinced I had a one of the more serious causes of PT and wanted a further evaluation. I wasn’t convinced my MRI and MRAs were “unremarkable”. This doctor took pity on me and agreed to do the most invasive of tests — a cerebral angiogram. I was scheduled 2 days later.
Early in the morning the day after Thanksgiving, I underwent cerebral angiography which took pictures of the arteries and veins of my brain from the “inside”. Another neurosurgeon in the practice performed the procedure which involved inserting a catheter through an artery in my groin to take the pictures. I had to lay flat for 4 hours after the procedure but I knew it was worth it because there was no way something wouldn’t be found.
“There’s no cause for your pulsatile tinnitus.” “Come back and see us in a few years if it doesn’t go away.” “I don’t see any reason you can’t get pregnant.” There was also a CT of my temporal bones in here somewhere too. Unremarkable, of course. Neurosurgery team refers me to a Neuro-otologist to see if I have a condition called Idiopathic Intercranial Hypertension (IIH).
January 2018. I score a quick appointment with the top Neuro-otologist in Pittsburgh. We discuss symptoms and tests. He does not think I have IIH but sends me to an Ophthalmologist to have my optic nerve checked. (Optic nerve swelling one of the hallmarks of IIH). No optic nerve swelling. No IIH. “Lose some weight, it might help.” Big bucket of water poured right on my fire.
It’s been almost 2 years of whooshing with no answers. PCP visits. Brain MRI. Brain MRA. ENT. Hearing test. Neurosurgeons. Cerebral Angiogram. Temporal Bone CT. Neuro-otologist. Ophthalmologist. I think an ultrasound too of my Carotid Artery. Nothing, nothing, nothing.
September 2018. Baby #2 is on the way! Maybe the whoosh will go away this pregnancy since it started with my first. Negative. Acceptance is setting in. Life as a working mom in corporate America takes over. The whoosh is there but manageable. Interestingly enough, the report from the angiogram becomes available around this time. A brief reference to something called an arachnoid granulation.
Hello, old friend Google. “What is an arachnoid granulation?” Complex descriptions of what these brain structures are abound — but in many of the clinical articles referencing them pulsatile tinnitus is also mentioned. The fire is once again reignited.
Back to the Whooshers page which now also has a growing Facebook group. Mentions of a few doctors around the country who have helped those without answers. I find an expert in the field — a specific type of Neurosurgeon, a Neuro Interventional Radiologist, located only a few hours from Pittsburgh. A quick e-mail and a, very surprisingly, quick response from him — scans were sent and reviewed. “Venous Sinus Stenosis.” (Note: the physician who wrote the linked article was not the same who reviewed my scans but it gives a good overview of the condition.) “We can likely help you with a stent if you want to come see us in the office.” A reason has been found. I had a vein narrowed in my brain. This fire is burning hot.
It’s February 2019 and I’m halfway through pregnancy #2. I thank this doctor for finding a cause and make a note to plan to see him after I have the baby and life settles. I give birth to a healthy baby girl in May 2019 and learn shortly after that this doctor has left Central Pennsylvania and was not currently practicing.
Life again gets in the way. Now a working mom of 2 in Corporate America. COVID. The fire has cooled to just the embers. I stayed active in the Whooshers Facebook group and there was on going chatter of a few other doctors around the country who were helping some members. However, nothing felt feasible during COVID with 2 kids.
December 2020. 5 years since I first heard the whoosh, I start getting headaches that I hadn’t experienced before. Given all I had been through, I felt it made sense to investigate to ensure no sinister cause. I book an appointment with a neurologist associated with the headache center at the other large hospital system in Pittsburgh. This appointment changed the course of my pulsatile tinnitus journey.
“You haven’t had a CTV.” The neurology Physician’s Assistant I saw at the Headache Center knew what test I needed and hadn’t had after all the years. A CTV is a CT Venogram that looks at the veins of the brain. A repeat brain MRI and brain CTV were scheduled in April 2021.
Both unremarkable. Except this time I wasn’t accepting the radiology report.
Back to the neurologist. Headaches have subsided and were attributed to a transient migraine. We both agree that Neurosurgery should review the CTV. Referral is sent and appointment is booked with a neurosurgeon specializing in endovasular treatments and neuro interventional radiology.
Upon my visit with this Neurosurgeon, I received my official diagnosis of Left Transverse Sinus Stenosis (narrowing of the left transverse sinus vein in my brain) and was offered to have a stent placed to “open” it up. The CTV I had showed the stenosis. After years of research, my mind was already made up that I wanted this procedure and I immediately agreed.
On September 21, 2021, I underwent venous sinus stenting of my Left Transverse Sinus. I was put under general anesthesia and my wonderful surgeon inserted a catheter through a major vein in my groin and threaded to my brain to place the stent. The narrowed vein was located close to my ear and there was increased pressure causing a turbulent blood flow that produced the whooshing sound. The narrowing was attributed to a large arachnoid granulation — which you might recall was also seen in my angiogram in 2017. I woke up from surgery to silence for the first time in 5 years.
I will forever be grateful to the Neurosurgery team at Allegheny General Hospital, part of Allegheny Health Network, for finding and treating the cause.
For those of you still searching for your answers, don’t let your fire go out. Be your own advocate. Research. Research more. Connect with others via the Whooshers Facebook page. Don’t be told to live with it. Search for a venous cause. Have an MRV or CTV of your brain. See a Neuro Interventional Radiologist. Circulate your scans. Do whatever it takes.
Stay the course. The silence is worth it, friends.
