![]() “Patients are oftentimes educating doctors, and it’s a legitimate education,” Shapiro said. Maksim Shapiro, an interventional neuroradiologist at New York University Langone Medical Center, who treats patients with vascular abnormalities. Greenwood’s efforts have “really impacted how pulsatile tinnitus is viewed,” said Dr. “This could lead to a request for more information or a denial of reimbursement.” “If you have vague or outdated codes, it is difficult for payers to figure out what they’re paying for,” said Sue Bowman, senior director of coding policy and compliance at the American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. (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.)Ī proper diagnosis also helps for insurance purposes. Many cases are fixable, often by a catheter-based procedure and occasionally by surgery. Greenwood, 41, urges fellow whooshers to get the appropriate diagnostic imaging - often including an MRI - and circulate the films to doctors who might help. “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. They’re routinely, and mistakenly, told nothing can be done medically. When patients start noticing a noise in the ear, they usually consult first with an otolaryngologist, or ENT. Information is scant, but one small study found that 4 percent of patients reporting tinnitus actually had pulsatile tinnitus.ĭoctors often overlook the symptom. Pulsatile tinnitus is far less common than regular tinnitus, which afflicts around 20 percent of adults in the United States. “I recognize the desperation people feel.” ![]() When her whoosh first struck, “I didn’t even know it had a name,” she said. 1, pulsatile tinnitus gets its own designation. In the latest update to the codes, which took effect on Oct. 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. “It’s a travesty that the two share a name.” “Pulsatile tinnitus is not tinnitus,” Greenwood said. The sound isn’t a ringing, but a swishing, pulsing, or thumping that is sometimes even described as a bird flapping its wings. It often heralds a vascular condition, after all, not an auditory problem like tinnitus. They’re the most popular part of the site.Īt 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. 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. Some patients have given the T-shirts to their doctors. 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. ![]() She started a website,, with links to medical research and tips to help physicians understand the symptom. So Greenwood set out on a crusade to awaken the world to the whoosh. The pulsing sound can indicate a condition that could lead to seizure, stroke, or death. That’s a problem because whooshing can be treated - and sometimes, needs to be addressed quickly. 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. Her “whoosh” was, in medical terms, a “bruit” - the sound of turbulent blood flow through a narrowed vein in her brain. It took a few months, but Greenwood finally found a doctor who understood what she was hearing and diagnosed her with a vascular condition. The sound dogging her days, by contrast, was a low-pitched rhythmic whoosh, pulsing in sync with her heartbeat. When she listened to the “sounds of tinnitus” online, they reminded her of a whistling teakettle or squealing brakes. The internet told her she had tinnitus, often called ringing in the ears. Seven years ago, New York lawyer Emma Greenwood awoke to the beat of a pulse on one side of her head.
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