Is Empty Nose Syndrome Real? And If Not, Why Are People Killing Themselves Over It?

 
 
 
 
 

 

 
 
 
 
 

When Brett Helling turned 36 on January 29, 2015, he was living in his parents’ basement in Worthington, Ohio, a well-heeled suburb of Columbus. His mom made him his favorite dinner: roast beef and mashed potatoes with Texas sheet cake for dessert. Brett’s friends sent him happy birthday messages on Facebook. Some asked where he’d been, why they hadn’t seen him in so long. Down the road at Natalie’s Coal-Fired Pizza and Live Music, where Brett had been working fewer and fewer bartending shifts, his co-workers texted him, begging him to come celebrate. But he didn’t want to be seen. He couldn’t do anything but lie on the couch, listless, trying to ignore the sensation of suffocation that had been plaguing him for nearly a year.

 

It started in middle school with allergies that only got worse over time. As an adult, Brett struggled with sinus infections that refused to go away. They clogged his ears, gave him headaches, and led to restless nights. It got so bad that in February 2014 he decided to have an ear, nose, and throat doctor perform a septoplasty, a routine sinus surgery to correct a deviated septum. His older brother had undergone the same surgery.

After lying low for about a week, Brett returned to his bartending gig. He told his doctor in follow-up appointments that something felt too “open.” The doctor assured him that barely anything was removed during the surgery, but over the next several months, Brett couldn’t shake the feeling that something was very wrong. His breathing was all messed up. In fact, he couldn’t even feel himself breathing through his nose. Instead of steady, rhythmic breathing, he felt like he was constantly coming up for air. And it was more than that. His senses felt dulled, like he’d had a lobotomy. Emotions he used to access easily now seemed far away, out of reach. Everything felt like nothing.

Brett and his girlfriend had recently moved into an old house, so at first, Carol Helling attributed her son’s symptoms to dust and other allergens. Plus, Brett could be a bit of a hypochondriac. He was always collecting vitamins and supplements to treat various ailments, and he was extremely sensitive to over-the-counter medications. He claimed he could tell the difference between Tylenol and generic acetaminophen.

Brett also tended to obsess over things, and Carol says obsessive-compulsive disorder runs in the family. As a toddler, he wouldn’t eat dinner until all the kitchen cupboard doors were closed. From high school through adulthood, he was notorious for his 45-minute-long showers; he had to wash in a certain order – neck, left shoulder, right shoulder – and if the routine got screwed up, he’d start over. He wore two or three T-shirts at a time, usually in hard-to-miss, lollipop colors.

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 

Brett and his nephew Preston in 2011.

 
 
 

Courtesy Helling Family

 
 
 
 
 

But for most of his life, Brett’s quirks were more endearing than concerning. In fact, other than his family and some close friends, no one would have suspected he battled anxiety and depression, which surfaced most often in winter. He drank frequently, and breakups could send him into an emotional tailspin. But no one was overly concerned about Brett before his surgery. He played guitar and bass, gigging often with several bands. He was a cheerleader for his friends, especially his bandmates and others in the Columbus indie-rock community. At work, regulars would come to Natalie’s just to see him.

It wasn’t until summer that Brett’s friends and family started taking his complaints seriously. He worked fewer hours, spent more time at his parents’ house, and stopped showing up to band rehearsals. While researching his symptoms online, Brett came across something called empty nose syndrome, a rare, controversial condition that can occur after surgical procedures on cylindrical structures inside the nose called turbinates. At first, he was relieved – empty nose sounded horrific. Good thing he’d had surgery on only his septum, not his turbinates. And yet the symptoms these patients talked about sounded so much like his own. The nasal dryness. The paradoxical open-yet-suffocating feeling. Panic. Insomnia. Fatigue. Anxiety. Depression.

In August, Brett dug out his surgical report. There, alongside the septoplasty, were the two words he feared most: “turbinate reduction.” He fell to his knees, hugged his dog, and cried. He hadn’t paid attention to the other, supposedly routine procedures his doctor had glossed over. They were presented to him as fine print, as nothing to worry about.

Brett was convinced his surgery had given him empty nose syndrome, but his doctor disregarded his concerns. Another ENT physician told him he was just having anxiety. It was a conservative surgery, nothing to worry about. “Breathe through your mouth,” the doctor told him.

That fall and winter, all Brett could think or talk about was his nose. He was constantly fussing with it – rubbing it, wiping it. Co-workers who used to crave his attention began pawning him off on whomever had the time and patience to handle his obsessive rants about turbinates. By mid-October, he had checked himself into the ER and told the nurse, “I need to sleep or I’m going to die.” None of the nurses or doctors had heard of empty nose syndrome. They diagnosed him with depression, but Brett told them it was an ENT emergency. According to Brett, the ER doctor replied, “The head of ENT here doesn’t think so and will not see you.”

A few days after Brett was discharged from the ER, he began calling around to ask for painkillers and tranquilizers. Concerned friends started calling Brett’s bandmate Sean Gardner and Gardner’s wife, Mollie, who had known Brett for years and dated him in her early twenties. Mollie called Brett’s girlfriend, who told her she knew he needed help, and that she’d tried over and over again to help, but Brett wouldn’t listen to her. The Gardners decided to go see him.

“Right when we got there, we were like, ‘Oh, shit,’” Mollie says. “The dog immediately jumped into my arms. Brett’s like, ‘Sorry, he’s just looking for some normalcy. I’ve been a little crazy.’”

“He kept asking for beer,” Sean says. “We were listening to records, and he was turning them up super loud while we’re trying to talk to him. He’s pacing and kept saying the same five-minute conversation about turbinates. Over and over.”

“He wasn’t showering, not eating, not sleeping,” Mollie says. “All he could do was this loop.”

Eventually, the Gardners convinced Brett to check himself into Harding Hospital, Ohio State’s psychiatric treatment center, where Mollie works as a nurse. “He kept joking that he was kind of excited because now he would have his One Flew Over the Cuckoo’s Nest story,” Sean says.

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
 

 

 
 
 
 
 

Brett stayed at Harding about a week, and when he got out, his friends and family were hopeful. They thought he might start sleeping, and maybe the prescribed antidepressants would do the trick. But he didn’t stick with them or the psychologist. He felt like no one was listening to him. His head wasn’t the problem – someone needed to fix his nose!

In December, Brett and his girlfriend broke up. He tried to tend bar, but working while feeling on the verge of drowning was torturous. To get through a shift, he’d sometimes run to the liquor store across the street to buy a pack of gum, which helped force him to mouth-breathe. And even though music was his greatest love, he stopped playing guitar. He moved back into his childhood home, where he spent his days and nights pacing the house with Kleenex stuffed up his nose. “I can’t live like this. This is miserable,” he told his parents. “I have no life now. I want my life back. I had a good life.”

Brett was embarrassed by what he’d become. He lost all his empathy. He even envied people with cancer. Everyone has heard of cancer. Doctors take it seriously. He envied strangers blowing their snotty, functioning noses. His sinus cavity, meanwhile, felt like a hollowed-out pumpkin. In frantic attempts to explain the sensation, he’d grab his mom’s fingers and stick them up his own nose. She tried to comfort him. “Sweetie,” Carol would say. “You know we haven’t seen all the doctors there are to see. We need to do some more research. Sometimes shit happens, and we’ll get through it. It’ll be OK.”

On Monday, February 16, 2015, four days shy of the one-year anniversary of his surgery, Brett drove his green Ford Focus down Interstate 71 in the snow toward Cincinnati. After crossing the Jeremiah Morrow Bridge – the tallest in Ohio – he parked near a closed rest stop, set his iPhone on the center console, rolled down his window, and got out of the car. Snow whipped around his face. It was severely cold, the windchill well below zero. His hands were white, his cheeks red. Low temperatures dried out his nose even more than usual, and the cold air hurt. Even though his mom had recently bought him a nice orange coat, he wore only a blue hoodie, black pants, and a winter hat.

The highway was under construction, and Brett walked north along a closed portion toward the bridge. A construction worker asked him where he was going, and Brett told him he was trying to get to the other side. The worker told him that he could drive him across and that he should come warm up in his truck. Brett shook his head and kept walking. Once he hit the bridge, Brett took off running, then stopped and looked over the edge. Climbing a parapet, he dangled his legs over the side, hung on briefly, then dropped 177 feet.

Turbinate reductions are routinely performed around the world, and usually with great success. But some patients say this surgical procedure ruined their lives. In Michael Jackson’s wrongful death suit, one of his doctors testified that Jackson’s insomnia could have been a result of empty nose syndrome. Online ENS forums and Facebook support groups are filled with people who say they’ve been discarded by doctors who told them nothing is wrong – that it’s psychogenic, all in their heads. In China, one man who said he had empty nose syndrome became so enraged that he stabbed an otolaryngologist to death. Others direct violence toward themselves. When regular ENS commenters go silent online, the community wonders if they’re gone for good.

Even as some ENT doctors doubt the syndrome’s existence, a handful of otolaryngologists have made it their mission to figure out why some people develop it, how to prevent it, and whether underlying mental conditions should be considered when diagnosing and treating this invisible illness. Meanwhile, ENS patients continue to plead for help and relief.

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
 

 

 
 
 
 
 

During his ear, nose, and throat residency at the Cleveland Clinic, Dr. Steven Houser shadowed his attending physician during nasal surgeries and sometimes handled initial consultations with patients during clinic visits. One day toward the end of his residency in the late ’90s, Houser examined the chart of a middle-aged woman who was complaining of nasal blockage, congestion, and difficulty breathing. The attending doctor had operated on her turbinates years earlier. She’d had plenty of time to heal, so Houser assumed the patient must have hit her nose or maybe developed a polyp. But when he examined her, he was surprised to see that her nose wasn’t blocked at all. (“You could drive a truck through there,” Houser says.) Her septum was straight. There were no holes or other oddities, but her turbinates – those tubular, bony structures inside the nose – were significantly reduced from the surgery. The woman told Houser that for some reason, she could breathe easier when she had a cold.

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 

Dr. Steven Houser

 
 
 

 

 
 
 
 
 

Houser was baffled. How could this woman have trouble breathing when her nose was wide open? And why would a cold make her feel less blocked? He described the situation to his attending physician, who then went into the room without Houser. After the appointment, the attending physician hemmed and hawed and never provided a good explanation. He told Houser not to worry about it.

But Houser did worry. What could explain such a bizarre condition? He did some research, and after talking to Dr. Murray Grossan, an ENT doctor in Los Angeles, he learned about empty nose syndrome, a controversial condition coined by the Mayo Clinic’s Dr. Eugene Kern in 1994. Kern described “nasal cripples” who, after turbinate surgery, suffered from symptoms like nasal dryness, crusting, and a sense of obstruction despite a wide-open nasal airway. With the help of colleagues, Kern conducted a study of 242 patients who’d been diagnosed with a rare type of nasal infection and theorized that many of these patients actually suffered from empty nose syndrome.

Not everyone in the ENT community was convinced by Kern. In a 2001 Los Angeles Times article, one physician referred to the supposed illness as “empty head syndrome.” But Houser took to the internet and began talking with people about their ENS symptoms. In one forum, he started a “Questions for Dr. Houser” thread. Some in the forum sound merely curious (“Is it good for us to swim?”). Some wonder about stem cell treatment to replace missing tissue (“Your first goal, if you want stem cells or another treatment,” Houser responds, “should be to get ENS recognized as a problem.”). Others can’t sleep and are getting desperate (“I am devastated. … I can find things to do to make it through the day; can you help me make it through the night?”). Eventually there were so many questions – nearly 30 pages of threads – that Houser’s wife was getting mad at him for spending all night on the internet. He had to stop answering questions online, but he didn’t stop his investigation.

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
 

 

 
 
 
 
 

Once patients realized an ENT doc was not only interested in their condition but also wanted to help, they began traveling from Australia, Europe, China, and the Middle East to Houser’s clinic in Cleveland. For patients Houser diagnosed with ENS, he developed an AlloDerm implant to mimic the lost turbinate tissue. Insurance didn’t cover the $9,000 to $14,000 procedure, but it seemed to be working. One of Houser’s patients self-published a book about his ENS experience: Having Nasal Surgery? Don’t You Become an Empty Nose Victim! Houser wrote the foreword.

“I’ve had about a dozen patients tell me that I’ve saved their lives and kept them from committing suicide,” says Houser, who has operated on about 70 people. “That’s why I continue to do this, because, to be honest, these patients are very difficult.”

Since Kern’s report in 2001, very little had been written about empty nose until Houser published the findings of his experimental implants in 2007, and then another article – “The Diagnosis and Management of Empty Nose Syndrome” – in The Otolaryngologic Clinics of North America in 2009. In the same journal issue, Dr. Spencer Payne at the University of Virginia published a response paper titled “Empty Nose Syndrome: What Are We Really Talking About?”

“The problem with empty nose syndrome is probably not that it does not exist,” Payne writes, “it is that we cannot adequately explain its existence by what we currently understand about the nose. Many otolaryngologists are unwilling to make a ‘leap of faith’ and, instead of acknowledging the existence of something they do not understand, are left skeptical of it in its entirety.”

While the symptoms ENS patients complain of are unique, their plight is familiar. For years, people suffering from chronic fatigue syndrome were treated with skepticism from the medical community and often told their debilitating condition was psychogenic. “Maybe these people are just lazy” was the unspoken (or sometimes spoken) refrain. BuzzFeed previously reported on a 2010 CDC study that concluded chronic fatigue patients suffered disproportionately from “maladaptive personality features” like neuroticism, paranoia, and OCD. It wasn’t until 2015 that the National Academy of Sciences pronounced chronic fatigue syndrome to be a debilitating condition with concrete physical symptoms and not a psychological illness. In the same NAS study, most patients reported it taking more than a year to get a diagnosis; a third reported it took more than five years.

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
 

 

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