Congestion, burning and no sleep

Rhoton’s initial surgery took place in April 2018. The doctor corrected the septum and removed most of the “inferior” turbinate – the largest of the three – from each nostril. Turbinate reduction is a common procedure used to improve airflow, with a success rate of 82%, according to the Cleveland Clinic.

Over the course of three months, Rhoton developed a worsening cascade of symptoms. He felt like he could no longer breathe through his nose. His nasal passages became congested and crusted, with a nagging burning sensation. “I felt like I was suffocating,” he says.

He had to breathe through his mouth, almost like he had a persistent cold that wouldn’t go away. He couldn’t sleep and became extremely sleepy during the day. The constant fatigue left him with no energy or motivation. He became anxious and started eating junk food. He gained weight. And, to his frustration, the whistling resumed.

Most distressingly, he felt too tired to play with his sons, now 5 and 2. “It was like I was on a two-hour battery,” he says. “I wanted to do fun things with my kids, but I was so diminished that I couldn’t care for them. I’d fall asleep in the lawn chair while I was supposed to be watching them play outside.”

He’d never had sleeping problems, but now he’d nod off during work because he couldn’t sleep at night. “I’d be on a call and fall asleep,” he says. “The person on the other end of the phone would ask: ‘Bradley, are you there?’ and I played it like it was a poor connection.”

He tried nasal sprays and other decongestants, saline irrigation, allergy medications, and antihistamines. None worked. He returned to the ENT doctor in October, who found a small hole in his septum, which he repaired, but Rhoton’s symptoms did not improve. In May, he had a small benign growth removed from one of his nostrils. That didn’t help, either.

Frustrated, over the next 18 months he sought help from other doctors, including his primary care physician and two new ENT specialists. “They told me my nose looked fine,” he says. “They said: ‘Your nose is wide open. Straight. Healed. There’s nothing wrong with you.’”

All in his head, sleep apnoea?

He began to wonder if some of the specialists he’d seen were right that “it was all in my head,” even though he’d expected the original surgery to go well and was surprised by the ensuing symptoms. He found it vexing that no one took his symptoms seriously. “It was an upsetting journey that raised questions about how the health-care system responds and the often overlooked psychological toll of being medically misunderstood,” he says.

Rhoton considered the possibility that his breathing problems – which at times were so bad that he couldn’t go out with friends, exercise or engage in his favourite hobbies, such as photography or playing hockey – actually might be unrelated to his nose and the surgery.

He saw a sleep specialist, thinking perhaps a sleep disorder was causing his disrupted sleep. The doctor diagnosed him with mild sleep apnea and recommended a CPAP machine, which helps keep a person’s airways open, at night. He tried but couldn’t stick with it because wearing a mask over his nose and mouth exacerbated his symptoms, and he felt like he was gasping for air.

He then went to a cardiologist, who gave him a stress test and drew blood for lab work. Everything was normal.

Finally, in November 2023 Rhoton spoke by telephone to Subinoy Das, medical director of the US Institute for Advanced Sinus Care and Research in Columbus, Ohio, whose name he’d found through social media. Das said he could not diagnose Rhoton from afar, but the two discussed several possibilities, including a rare and debilitating disorder that sometimes occurs after turbinate surgery: “empty nose syndrome,” in which patients develop relentless and severe nasal congestion and significantly restricted breathing through the nose.

ENS is not a well-understood disorder and is a somewhat controversial diagnosis because of its counterintuitive nature, since turbinate surgery is meant to improve breathing, not make it worse.

It’s unclear why some patients experience breathing problems following turbinate surgery, while most do not. Some experts think that anatomical differences among patients may play a role. Regardless, “it’s real,” says Pryor Brenner, a DC otolaryngologist who has seen only two ENS cases in 24 years among the more than 2000 nasal surgeries he’s performed.

“I discuss the possibility of ENS with all my patients because it’s a major medical problem when it does occur,” he adds. “It can be incredibly impactful to their wellbeing, their quality of life, including to their mental health.”

Some experts believe that ENS results from the loss during surgery of important turbinate tissue receptors that signal normal airflow. With key receptors gone, some “patients feel like they can’t breathe,” says Eugene Kern, clinical professor in the department of otolaryngology, head and neck surgery at the State University of New York at Buffalo. “They have to breathe through the mouth. You no longer get the feeling of normal breathing.”

Kern identified the syndrome with a colleague in 1994 while working at the Mayo Clinic and coined the name. He believes ENS occurs more frequently than known, although there are no reliable estimates available.

While at Mayo, Kern treated nearly 250 ENS patients, all of whom had undergone turbinate surgery elsewhere. “I was seeing four or five patients a week,” Kern says, adding that it goes undiagnosed because many doctors “don’t understand the mechanism. It’s easy to diagnose when you know what you are looking for. You can’t miss it.”

A reason for hope

After talking with Das, Rhoton felt certain he was suffering from ENS. “Suddenly it all made sense,” he recalls. Das suggested Rhoton contact Jayakar Nayak, an ENT surgeon at Stanford University, who was using several effective novel treatment approaches and was also in Rhoton’s health insurance network. Nayak had published research articles on the condition and had a podcast about ENS.

“This provided me with something I hadn’t felt in years,” Rhoton says. “Hope.”

Nayak, an expert in nasal and sinus disorders, says he has performed thousands of inferior turbinate reduction surgeries for nasal congestion over the years with no ill after-effects, but acknowledges that problems can occur sporadically, making a diagnosis perplexing.

“Inferior turbinate reduction for abnormally enlarged and obstructing turbinate tissue is a remarkably safe and effective procedure to help patients to breathe and sleep better,” he says, and unfortunately “we don’t know why ENS happens in a small group of people and not in others. I’ve seen similar levels of tissue loss in other patients who don’t have any ENS symptoms and are so happy with their breathing.”

He also has received hundreds of referrals over the years to evaluate symptomatic patients for ENS, but only a fraction turn out to have the disorder, he says.

In Rhoton’s case, because his symptoms occurred right after the surgery, ENS was a likely diagnosis.

To confirm this, Nayak ran a series of tests when Rhoton came to see him last June. “We have a scoring system that lists the common symptoms of ENS with a maximum score of 30, with 30 being the worst,” Nayak recalls. “Bradley’s score was 26.”

The doctor performed a second diagnostic test by inserting cotton into various areas of Rhoton’s nose. When the cotton was placed in the nostril areas where tissue was missing, “he was breathing like a normal person. He went from 26 to 2 on the scoring”.

Nayak recalls that Rhoton “was so pleased, he was almost crying. He told me that ‘whatever you just did, just leave it be. I finally can breathe through my nose again.’”

The next step was a series of injections – four or five in each nostril – with a gel made of carboxymethyl cellulose, a filler used in many pharmaceutical products. Although the temporary filler does not restore lost nerves and receptors or last forever, it improves airflow. A permanent solution for those who appear to be good candidates is surgery to implant rib cartilage (sanitised and irradiated material taken from cadaver sources) into nasal passages to replace missing turbinate tissue. While not a complete cure, it significantly reduces symptoms, Nayak’s research found.

Last September, Rhoton got the injections and improved substantially in the month that followed. “I could breathe through my nose. I could sleep. My mood improved. I felt motivated,” he says. “The difference was amazing.” He has had a follow-up series of injections when his breathing worsened again and is now leaning toward having the surgery, probably in the fall.

And, he says, “I’m hopeful for the first time in nearly six years. I feel like my old self is emerging again.”