According to Mayo Clinic, an acoustic neuroma is a benign tumor that develops on the balance (vestibular) and hearing, or auditory (cochlear) nerves leading from your inner ear to the brain. 

This recent article highlighted the story of a Michigan woman who presented symptoms including pulsatile tinnitus for years, but her complaints were dismissed and some doctors even told her they were a result of her pregnancies. Some doctors even suggested that her multiple trips to the ER were her efforts just to get more drugs.  She was completely dismissed, feeling like no one believed her. 

Eventually, after her SECOND child was born and her symptoms persisted doctors ordered a CT scan and MRI, which revealed that her symptoms were caused by acoustic neuroma. She had surgery. Her path of recovery was both physical and psychological. Sharing her story was part of that process.

While acoustic neuroma is a rare cause of pulsatile tinnitus, this woman's story brings up the unfortunate, familiar experiences many patients with pulsatile tinnitus have with members of the medical community that are unfamiliar with our symptom. Persistence is key. 

For more information on acoustic neuromas, see the following links here, here and here. There are also numerous support groups on social media.

And doctors, please update your sites! Add PULSATILE tinnitus as a possible symptom, in addition to tinnitus. Pulsatile tinnitus is not tinnitus and the distinction is important. This woman's symptom was clearly described as a whoosh sound that was in sync with her heartbeat (pulsatile tinnitus) not ringing in the ears. We've gone to great lengths to promote the distinction for our community - even getting our own medical codes. 

This and many other personal stories and medical reports may be found on the Cured Whooshers page.  

"How many members of the pulsatile tinnitus community are under the age of 18?"

"I've heard the whoosh since I can remember - I never thought it wasn't normal."

"I told my teachers when I was little that I heard soldiers marching in the snow, but no one believed me."

"I'm a parent of a young child and can hear the whoosh when laying beside him/her." 

These are just some of the questions and testimonials received over the years regarding pulsatile tinnitus and children.

As of today, if you Google "pulsatile tinnitus and children" the first results include erroneous links about tinnitus (which is not pulsatile tinnitus), ads for ENTs (who are usually not the ideal medical professional to consult about *pulsatile tinnitus), and links to inhalers, which are hardly ever the solution for any patient with pulsatile tinnitus.

Often, by the time pulsatile tinnitus is taken seriously in a child's case, the child is a young adult or older. Parents of young children email us periodically in a panic when they hear their child's whoosh, or hear child's complaints of the whoosh and when they (like adult patients) are blown off. As difficult as it is for adults to find proper care for this symptom and to determine the underlying cause, it is exponentially more complex in a child's case. There are relatively few doctors who truly understand the complexity of pulsatile tinnitus, and even fewer who treat younger patients.  

This has to change.

Reports on this topic are few and limited in information, primarily because the studies usually involve so small numbers of participants.  We don't know how common pulsatile tinnitus is among children. We don't even know enough today about how common pulsatile tinnitus is among adults. But we do know there have been cases of pulsatile tinnitus among children, and on occasion the topic gains more attention.

For example, this recent report regarding idiopathic intracranial hypertension, a potential underlying cause of pulsatile tinnitus, is focused on children. Not all patients in the study presented with pulsatile tinnitus, but a portion did. The report reflects that the small sample size of the study is among the limitations of the study. It's a step in the right direction, asking questions of a subset of our community we know too little about. 

If you are a younger person reading this, or an adult who experienced pulsatile tinnitus as a child, or a parent of a child possibly suffering from pulsatlle tinnitus, we believe you! Keep searching for answers.

Parents, let us know if our community can help.  

Article source: Gondi KT, Chen KS, Gratton SM. Asymptomatic versus symptomatic idiopathic intracranial hypertension in children [published online July 1, 2019]. J Child Neurol. doi:10.1177/0883073819858455