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 symptoms began on May 29, 2019. I hit the pillow like it was a linebacker hitting me who weighed 400 pounds. The next morning I woke up with severe vertigo and the whooshing sound in my left ear.

    I have since been to my ENT twice and he seem to ignore my requests. I went to an emergency clinic and asked him to listen for a carotid bruit, to which nothing was heard.

    FlashForward five weeks and that same ENT who had ignored it and listen to me he said that I needed to have surgery for a deviated septum. After speaking to my brother who is a radiologist he said that would be a terrible idea to have surgery when you do not know what’s going on behind your ear.

    So my surgery is actually set for tomorrow and I have decided to cancel it. I feel that I need to have a test which is either an MRA, and MRI or an CT Angio.

    My case is further complicated because in 2016 I had a metal plate place in my neck for cervical fusion. That makes an MRI much likely to be scattered on results and therefore not very good.

    It’s also important for patient to know the right kinds of test to rule out tumors, aneurysms, blood vessel issues, carotid stenosis, etc etc.

    Just because you do not have symptoms does not mean you do not have something serious besides just the annoying sound. And just knowing that you have the annoying sound in which year it is, is not the only issue. You need to go and get the test to make sure you eliminate everything that could possibly be extremely serious or even fatal.

    So be careful not to just dismiss this as “whooshing” and you’re done. That’s only the beginning.

  • I thought I was the only one~ It just started and it’s driving me crazy~
    Seems like when I blow my nose ,I get relief for a few seconds~
    Time to look for a ear doctor~
    Thanks for the information~

  • Dear Ms. Cohen,
    I meant to thank you for the article you wrote. It is very helpful information.

    Sincerely,
    Betti Lee

  • May 18, 2019
    Dear Ms. Greenwood,
    I wish to take a moment to thank you from the bottom of my heart for the Whoosers.com site. My son is a PT sufferer and has been going through many of the agonizing symptoms expressed by other PT patients. I worry about him as he is so unhappy/miserable and I wish and pray he could find resolution.
    I notice that the Whoosers events are held in NYC. Is it possible to hold one in Houston, TX , or in different cities of the nation, so that people from all around could attend? Amazingly enough, there doesn’t seem to be enough specialists who know enough about PT here and my son has had several expensive tests which produces futile results.
    Also, in the news there has been controversy over “contrast dye” used in MRIs with negative reaction. Chuck Norris’ wife has filed a class action suit. What is your opinion, please.
    Lastly, I came across Whooser’s Go Fund Me. There needs to be more awareness made about PT so that donations can increase.
    I know you must be extremely busy, so I want to keep this short.
    I would deeply appreciate hearing from you.

    Kind regards,
    Betti Lee

  • Hi Emna,
    Thanks so much for taking on the quest to make this known to the world. I have been going through same since the past years and it has now gotten to where it is unbelievable and I can’t bear the sounds. It is disturbing the quality of my days and night.
    Hope there is a cure soonest.
    Thanks again for bringing this problem to light. I had done MRI, CT and Ultrasounds, nothing is found. My family doctor don’t know what he could do to help me. He recently referred me to ENT and Neurologist. I am waiting for the appointments. Thank you to the author of this article as well

  • It’s been 8 years. Brain aneurysm coiled & stented. Still I whoosh! Now it goes from a whoosh to what feel like a heart pounding in my head. And now and then in jaw on left side.

    • I also had the wooshing sound.
      My ENT did hearing test- perfect.
      Caroited arty test -perfect.
      Ct scan. I have a Glomus Jugular
      Tumor ( non cancerous)
      I am being treated with radiation.

  • I have this sound but I only her when walking sitting and it sound like it’s coming from my ears. This my first time commenting.

  • I tried to tell my psychiatric about the sound I heard in both my ears I couldn’t tell him what it sound like but reading this let me know I’m not crazy thank u so much for helping me figure it out it don’t fill good hearing this

  • Hi Emma I Also suffer from tennitus which I believe medication did to me. after I had 2 heart stents put in over a year ago. I went insane to the point I felt suicidal over it. I also went to dr. Maxsim shapiro put it wasn’t from vascular pulsating. I feel it in my head and especially when I bend down it becomes louder and louder and I pray to god it will end bc I always fear about the future. I hope they can find a cure bc I don’t want to be in anti anxiety meds. Pleas push for some miracle intervention for a cure. God bless us all. Thank you.

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