The path to diagnosis is often long and complicated, especially when the doctors you see for it are not familiar with our cases or the workup warranted. Even when the medical teams *are* familiar with pulsatile tinnitus, the cause can be elusive.

The April 2019 edition of The Hearing Journal reports on a 55-year-old female patient with pulsatile tinnitus that had an MRI eight years ago, which came back "clear."  She started her quest again recently with another MRI, which also returned with no remarkable findings. It's not clear whether the advocate for further testing was her doctor or herself, but she proceeded to have more tests to find answers. According to the report, a recent MRV finally revealed the cause: transverse sinus stenosis, a narrowed vein near the brain.

The abstract nicely describes some of the complexities of pulsatile tinnitus, a symptom with no straightforward workup warranted (no flowchart that is appropriate in every case, or priority of diagnostic tests) and which may be caused by numerous possible underlying causes that cross over many medical specialities.

This patient reported pulsatile tinnitus ten years ago. TEN YEARS AGO.  Chances are, if she'd had the MRV back when she had the MRI, her diagnosis would have been detected. Now, with a diagnosis, she can discuss with her doctors whether or not she should stent the vein to try to relieve the whoosh, which has been discussed in numerous medical reports and patient stories in the last ten years, or some other intervention. 

But, ten years ago, much less was known and discussed about pulsatile tinnitus and this underlying cause, specifically. Also, the imaging nowadays is much improved.  Recent studies, like this one, report on the possible connection between transverse sinus stenosis and intracranial hypertension, a condition that itself remains mysterious and is often misdiagnosed. Nonetheless, patients still do not receive the appropriately complete workup warranted to look into the underlying diagnosed cause for pulsatile tinnitus.

The Hearing Journal report doesn't make clear the circumstances of the patient's incomplete workup from eight years ago.  Maybe her doctors suggested that, since the MRI came back "clear," she was fine and should just "live with it" (words we pulsatile tinnitus patients shouldn't hear until a complete workup is achieved).  Perhaps (and just as likely) the patient may have opted out of further testing once the MRI ruled some things out. Undergoing testing is difficult for many patients - it's time consuming, often worrisome and not to mention expensive, especially for those of us who pay out of pocket. 

What shouldn't be lost in this report, is that it is NEVER TOO LATE to start or REstart a search for answers to the cause of pulsatile tinnitus!  Imaging improves over time, and much more is understood about pulsatile tinnitus now than a decade ago.  Ten years from now, we expect even more advancements in technology, medical studies and awareness.

This patient endured the whoosh for ten years before finding her diagnosis.  Be your best advocate! 

See more medical reports on Transverse Sinus Stenosis on the Cured Whooshers page. 

Source: Symptom:Pulsatile Tinnitus; Djalilian, Hamid R., MD; The Hearing Journal: April 2019 - Volume 72 - Issue 4 - p 40,42,45; doi: 10.1097/01.HJ.0000557749.66270.21