Seven years ago, New York lawyer Emma Greenwood awoke to the beat of a pulse on one side of her head. The internet told her she had tinnitus, often called ringing in the ears. So did her doctor.

She knew that wasn’t right. When she listened to the “sounds of tinnitus” online, they reminded her of a whistling teakettle or squealing brakes. The sound dogging her days, by contrast, was a low-pitched rhythmic whoosh, pulsing in sync with her heartbeat.

It took a few months, but Greenwood finally found a doctor who understood what she was hearing and diagnosed her with a vascular condition. Her “whoosh” was,  in medical terms, a “bruit” — the sound of turbulent blood flow through a narrowed vein in her brain.

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Greenwood figured she couldn’t be alone: Many other patients hearing a whoosh had no doubt had been told they had tinnitus — for which there is no medical treatment. That’s a problem because whooshing can be treated — and sometimes, needs to be addressed quickly. The pulsing sound can indicate a condition that could lead to seizure, stroke, or death.

So Greenwood set out on a crusade to awaken the world to the whoosh.

She started a website, whooshers.com, with links to medical research and tips to help physicians understand the symptom. In a bid to raise awareness among the general public, she sells $25 “Do You Whoosh?” T-shirts, with the question mark shaped like an ear. Some patients have given the T-shirts to their doctors.

Greenwood, who also runs a Facebook support group, encourages patients to share their stories through social media on “Whoosher Wednesdays.” And she posts recordings of people’s whooshes, which are sometimes loud enough to be captured with a smartphone. They’re the most popular part of the site.

At the heart of her activism: A quest to get whooshing (the common name is “pulsatile tinnitus”) recognized as a symptom separate from tinnitus within the medical coding system. It often heralds a vascular condition, after all, not an auditory problem like tinnitus. The sound isn’t a ringing, but a swishing, pulsing, or thumping that is sometimes even described as a bird flapping its wings.

“Pulsatile tinnitus is not tinnitus,” Greenwood said. “It’s a travesty that the two share a name.”

Over four years, she collected more than 2,500 signatures on an online petition to get whooshing its own medical codes — and it finally happened. In the latest update to the codes, which took effect on Oct. 1, pulsatile tinnitus gets its own designation.

“Awareness is key,” Greenwood said. When her whoosh first struck, “I didn’t even know it had a name,” she said. “I recognize the desperation people feel.”

A rare condition

Pulsatile tinnitus is far less common than regular tinnitus, which afflicts around 20 percent of adults in the United States. Information is scant, but one small study found that 4 percent of patients reporting tinnitus actually had pulsatile tinnitus.

Doctors often overlook the symptom. When patients start noticing a noise in the ear, they usually consult first with an otolaryngologist, or ENT. They’re routinely, and mistakenly, told nothing can be done medically. That’s true for tinnitus. But not for pulsatile tinnitus.

“If these patients are taking advice from doctors who know nothing about the distinction, they are not going to get the help they need,” Greenwood said.

Greenwood, 41, urges fellow whooshers to get the appropriate diagnostic imaging — often including an MRI — and circulate the films to doctors who might help. Many cases are fixable, often by a catheter-based procedure and occasionally by surgery.

(It’s important to make sure you have pulsatile tinnitus before getting an MRI, however, because the noisy scan can be dangerously loud for patients with regular tinnitus.)

A proper diagnosis also helps for insurance purposes. “If you have vague or outdated codes, it is difficult for payers to figure out what they’re paying for,” said Sue Bowman, senior director of coding policy and compliance at the American Health Information Management Association. “This could lead to a request for more information or a denial of reimbursement.”

Greenwood’s efforts have “really impacted how pulsatile tinnitus is viewed,” said Dr. Maksim Shapiro, an interventional neuroradiologist at New York University Langone Medical Center, who treats patients with vascular abnormalities.

“Patients are oftentimes educating doctors, and it’s a legitimate education,” Shapiro said. “Pulsatile tinnitus is typically not a concern of the ear per se. The ear is doing what the ear is supposed to do — picking up sound.”

His department now hosts regular information sessions on whooshing.

The crusade continues

Sometimes the whoosh can be heard with a stethoscope placed on the skull. Another way to identify it, Shapiro said, is to have patients tap to the beat of the crescendo they’re hearing while he takes their pulse. The pulsatile beat is always in sync with the heartbeat. When patients exercise, their heartbeats will quicken. So will the pace of their whoosh.

Even if the underlying condition isn’t life-threatening, it can be intensely annoying. “If I do a procedure purely based on relief of the sound, I tell the patient it’s very legitimate to treat a sound that is so disturbing that it ruins the quality of life,” Shapiro said.

Greenwood opted not to have any procedure to address her whoosh. She said her own condition is tolerable.

But she’s not yet done with her crusade.

She would dearly love to get the condition renamed so it doesn’t include the term “tinnitus” at all.

The four new codes — for pulsatile tinnitus of the right ear, left ear, both ears, and unspecified ear — are categorized under “diseases of the ear and mastoid process.” Because the pulsing can indicate so many conditions, Greenwood would much rather see them listed under “not elsewhere classified” category.

“That word ‘ear’ just irks me,” she said.

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  • My pulsatile tinnitus was caused by a thyroid bruit as a result of Graves Disease/hyperthyroidism. Once I started on anti-thyroid medication the frequency of the pulsatile tinnitus decreased, when the antithyroid medication was doubled (under endocrinologist direction) the pulsatile tinnitus pretty much is gone. My path was Urgent Care doc, thinking fluid in the ears, on antibiotic with no improvement; then ENT, MRI to rule out brain and aorta issues; issue confirmed with endocrinologist.

  • It is important to match the sound to an audiogram frequency to differentiate an aneurism sound from tinnitus. Must perform a tympanigram and look for pulsing to D.C. An aneurism

  • I have had MRI CTV CTA hearings tests and Angiography with no answers. I feel like giving up. I don’t know how to find someone to help me. I am running out of time and benefits. Can anyone help? I live in Philadelphia and have seen Doctors at Penn Temple and Jefferson.

  • I definitely have this. In researching what it could be, I never really found an answer. Finally, just reading the diagnosis “pulsatilla tinnitus” as a Registered Nurse, I knew this was what I was trying to describe. The key for me was that it is synchronized with my heart beat. So therefore wouldn’t this be arterial?

  • “(It’s important to make sure you have pulsatile tinnitus before getting an MRI, however, because the noisy scan can be dangerously loud for patients with regular tinnitus.)”

    FALSE FALSE FALSE!

    A statement like this may scare a non-medical person into refusing an exam that could make a significant difference in their course of care.
    Any competent MRI facility is going to provide hearing protection to every patient, regardless of exam being performed. We do MRIs every day of the brain, cerebral vessels, inner ear structures, and many other areas.
    Ear plugs and headphones absolutely do not interfere with MRI examination of the head!
    In the case of tinnitus, one of the things we look for is acoustic neuroma. If it was “dangerous” for regular tinnitus patients to undergo MRI, many many people would be stumbling around, off-balance, losing their hearing, dizzy, & miserable with unconfirmed acoustic neuromas. Not to mention the various other tumors & structural abnormalities that can be visualized with MRI but are difficult or impossible to visualize using other, less noisey imaging modalities.
    Please check your facts prior to making blanket statements like the one quoted above.

    • The American Academy of Otolaryngology-Head and Neck Surgery issued its first-ever clinical practice guidelines for tinnitus in 2014. The guidelines include a STRONG recommendation AGAINST MRI for regular tinnitus.

      The guidelines state: “Clinicians should not obtain imaging studies of the head and neck in patients with tinnitus, specifically to evaluate the tinnitus, unless they have 1 or more of the following: tinnitus that localizes to 1 ear, pulsatile tinnitus, focal neurological abnormalities, or asymmetric hearing loss.”

      The recommendation against imaging is “a strong recommendation against, instead of a recommendation against, based on consensus regarding the importance of avoiding low-yield, expensive tests with potential adverse events in patients with tinnitus.”

      Here’s more: “If MR is performed, the high amount of noise generated by the procedure may be bothersome; this may even exacerbate preexisting tinnitus. Magnetic resonance procedures are loud, even with noise protection using earplugs.”

      The guidelines are online here: http://www.entnet.org/content/clinical-practice-guideline-tinnitus

  • I have this as well. I’m my case, I spent years being told I had “TMJ” and was given strong antibiotics and anti-inflammatories to “solve” the problem, which never made a difference. In the end, I was diagnosed with pseudotumor cerebri which included papillary edema (swelling of my optic nerves). Years later I found out that due to a clotting disorder I didn’t know I had, I developed a clot in my brain which caused the fluid to back up in my skull, thus causing the pulsing in my ear. For me my symptoms are now mostly controlled with medication, but if my blood pressure rises due to stress or too much sodium in my diet, the pulsing becomes more intense and can give me a migraine. This was a several year journey for me… so don’t give up, and don’t let doctors pidgeon hole you into a larger “blanket” diagnosis just because they don’t know enough… keep asking questions and seeking more opinions! Hopefully this helps save someone else years of searching.

  • In 2003 I finally convinced my former PCP that I needed to see an ENT because of the whoosing in my ear. Post-MRI I was found to have a benign brain tumor growing toward several cranial nerves. The meningioma was removed but the tumor had co-opted an artery which could not be removed so I hear the whoosh occasionally. The ENT originally asked me if the sound was a squeak or a whoosh, whigh was a defining question. Get an MRI and find out what is causing the whoosh. Had the meningioma touched one of the cranial nerves, I could have 1) lost all musculature on the left side of my face, 2) lost hearing in my left ear, 3) lost sight in my left eye.

  • ” Greenwood finally found a doctor who understood what she was hearing and diagnosed her with a vascular condition”. Which was what?????

    • There are many different causes and or cures. (and some cases can’t be fixed) Go to the Whoosher’s website at : http://whooshers.com/
      Emma’s story, along with the story of hundred of others is there. If you have questions, there is a “contact” link where you can reach out to Emma directly. She’s very responsive and was a great deal of help with I was trying to find my own cure.

    • “pulsatile tinnitus”

      I would imagine this explanation would make sense to physicians, or I hope it would.

  • In some patients you can see a blue oval shape which is the Jugular Bulb.
    These patients receive vascular studies to rule aut treatable aneurism.
    Regarding tinnitus, that is a treatable condition

    • ” Greenwood finally found a doctor who understood what she was hearing and diagnosed her with a vascular condition” Which was?

  • RE: “It’s important to make sure you have pulsatile tinnitus before getting an MRI, however, because the noisy scan can be dangerously loud for patients with regular tinnitus.” Surely earplugs can be worn during an MRI?

    • Not too sure about that. If the MRI is of the head/brain/ear area. then maybe nothing can be near the ear.
      As to another part of the body in for an MRI, they do give headphones and play music to lessen the sound to the patient.

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