Eugene Passer had never heard of the turbinates, a set of tissues that lie in the nasal cavity. Then a doctor removed much of them, he says, and life became a mess.
A New York college professor, Passer says he can no longer teach organic chemistry labs because he cannot detect the smell of dangerous fumes. Head and eye pains are constant. On cold days, the air leaves him dizzy and weak. He rarely travels anywhere without a humidifier, which eases some of his symptoms.
"I'd say a large part of my life has been destroyed--it's that simple," Passer said.
Now, sinus specialists are engaged in a contentious debate about what causes the problems reported by Passer, and by a small but increasingly vocal set of other patients. At professional conferences, one group of physicians has been trying to build a case that removal of too much turbinate tissue can cause an illness the doctors call "empty nose syndrome," which they say has appeared only in recent years.
Other specialists doubt that the syndrome exists. They say that turbinates have been removed for 100 years with few problems and that the pain patients report must come from some other cause.
The debate may sound arcane, but more than 160,000 people had turbinate tissue removed in 1996, the last year for which the Centers for Disease Control and Prevention has statistics. Some doctors think that the true number is far higher, and that it is rising.
People who think they have empty nose syndrome say it was a variety of complaints that initially prompted them to see a doctor. A few had structural problems in the nose, such as a deviated septum. Some had nasal growths, or polyps, that had to be removed. Most were seeking relief from the headaches and breathing problems that often come from sinus inflammation, a common complaint that accounts for nearly 10.8 million doctor visits each year, more than for asthma and about the same as for ear infections.
But these patients claim that the real trouble started after a doctor treated them by removing turbinate tissue, most often in an attempt to make breathing easier.
Now, Tom Brown, a New York businessman, says he feels like he has a permanent case of the flu. Bradley Santos, a federal worker in Washington, D.C., complains of headaches, and he says he has lost his senses of smell and taste.
"This problem just makes life a kind of hell," said Elizabeth Monroe of Seattle, who left her paralegal job to start a new business at home so she could surround herself with humidifiers and air filters.
Among nose specialists, empty nose syndrome has become a hot topic. When doctors from around the world gathered in Washington, D.C., last fall at Nose 2000, the quadrennial meeting of the International Rhinologic Society, they held two separate debates on whether the syndrome exists. The issue is also on the agenda next week at a conference of the American Rhinologic Society and eight other professional groups in Palm Desert.
"Every time we talk about it, the room is packed," said Dr. William H. Friedman, a St. Louis ear, nose and throat specialist, and an empty nose doubter.
"I call it the empty head syndrome," he said.
Although patients may be in pain, the notion that they have a discrete illness is an empty-headed one.
The debate shows that, at a time when scientists have deciphered the microscopic genes within our cells, there is still plenty to learn about the nose in front of our face.
Turbinates sit in three pairs in the nasal cavity. Most specialists believe they exist for several important reasons.
Cilia and mucus on the turbinates act as a defense against foreign agents, trapping airborne particles and other unwanted matter. They create a "weather pattern" in the nose that warms and humidifies inhaled air so that breathing cold air is comfortable.
Some doctors say turbinates also help with the act of breathing. Imagine water trickling thinly out of a garden hose; a thumb placed over the nozzle would make the water squirt farther. The turbinates may do something similar in the nose, forcing air through the cavities in ways that make it satisfying to take a breath.
Doctors have been removing turbinates for at least a century, often because they were diseased, inflamed or causing breathing problems. But the surgery was not common. To reach the turbinates, doctors had to push their instruments through the nostrils, which offer a poor line of sight. At times, they cut pathways into the sinuses, often by punching through the underside of the upper lip.
Then, in 1984, Dr. David W. Kennedy of the University of Pennsylvania began introducing U.S. doctors to an Austrian procedure that used an endoscope. A kind of telescope that attaches to a video monitor, the endoscope allowed surgeons to see the nasal passages far more clearly and to work there more comfortably.
As a result, doctors began performing more nasal surgeries.
In the early 1990s, as endoscopic surgery became widespread, Dr. Eugene Kern of the Mayo Clinic in Rochester, Minn., began to notice a number of patients with similar complaints. They included facial pain, crusting in the nose, breathing problems, bleeding and depression.
These patients had been told that they had atrophic rhinitis, a broad diagnosis referring to a general deterioration of the nose functions due to a range of causes. But the patients that interested Kern had one other thing in common: They had all undergone surgeries in which turbinates were pared back or removed.
A Chance Conversation, and Syndrome Is Named
One day in the summer of 1994, Kern was showing X-rays of these patients to a visiting Swedish surgeon, Monica Stenquist. "I put up the X-rays, and they show there's nothing in the nose," Kern recalled. "And Monica said, 'Oh, that looks like an empty nose.' "
Empty nose syndrome had been given its name.
Eventually, Kern--with Dr. Eric J. Moore and other colleagues--conducted a look-back study of all 242 patients they had seen from 1982 to 1999 with a diagnosis of atrophic rhinitis.
The study found that in 85 of the patients, the deterioration of nose function had been caused by normal aging, inflammatory disease or by infection.
For the other 157 patients, however, the cause was not any of those things.
Every one of the 157 patients had undergone surgery in which turbinates were pared back or removed. Kern reasoned that the surgery had caused a new and discrete ailment: empty nose syndrome.
Kern and Moore have written a paper on the study, but it has not yet been published in a peer-reviewed journal. Kern warned that the study does not show conclusively that turbinate surgery causes nose problems. That can be established only by a forward-looking study that compares people who have turbinates removed with those who do not. That type of study involves significant effort and patient cooperation, and none is in the offing.
For Kern, the retrospective study was proof enough. He now believes that the turbinates are like the human liver--remove a small portion, and the remaining organ works just fine. Remove too much and disaster results. "This is indicative enough for me to preach caution," Kern said. "People should have this surgery done judiciously."
Kern also believes that it can take years after surgery for symptoms to develop, possibly eight years or more. If true, this suggests that some patients may be suffering symptoms today that they do not connect with surgery undertaken long ago. For Kern, it also explains why several previous studies of turbinate removal found few or no problems: The authors were interviewing patients too soon after surgery.
A 'Major Problem,' Sinus Specialist Says
A number of sinus specialists believe that Kern is on to something important. "It's a real thing. . . . It is a major problem," said Wellington Tichenor, a New York physician. He said the syndrome turns up about once a month at his practice.
Dr. Murray Grossan, a Los Angeles ear, nose and throat specialist, said he is "violently against" removing the turbinates, except in cases where they are cancerous. Grossan has invented a device that allows people to clean their nasal passages with water, and he has sold 400,000 of them. He believes that as many as 10% of his customers, or 40,000 people, bought the device to manage their empty nose syndrome.
However, some specialists say Kern has not proved his case.
In some of Kern's patients, said Friedman, the St. Louis specialist, it could be that more tissue should have been removed to ease symptoms, not less. Complaints from other patients may be due to improper surgical technique rather than to tissue removal itself. Others may suffer from poor follow-up care, such as a failure to take antibiotics, which might allow infection to set in.
Kennedy, the physician who introduced the nasal endoscope to U.S. doctors, noted that sinus disease is often misdiagnosed. The headaches and other pains that prompted some of Kern's patients to undergo surgery may not really have been nasal in origin, he said. After surgery, these patients would have been left with their original problem, which Kern then blamed on the lack of turbinates.
David Slavit, a New York ear, nose and throat specialist, offered a somewhat different interpretation.
"Some people are having more extensive removal than the amount of disease would warrant," Slavit said. "Maybe we need to better evaluate who needs to have turbinates removed and who could get by with less aggressive surgery."
Kern said that he had challenged doctors who remove turbinate tissue to submit their future cases to an independent panel, which would review how patients are doing five and 10 years after surgery. There have been no takers so far, he said.
Some patients say they are sorry that they had any turbinate tissue removed at all. They say the surgery turned them into "nasal cripples," pained by the mere act of breathing and lacking a proper sense of smell.
"You don't realize how important all that is," said Brown, the New York businessman. "Smell locates you timewise. You can smell the morning and smell the evening. I can't smell if it's wet or dry outside. You can't even smell that you're breathing, and you need that to confirm that you're breathing. . . . I've lost a lot."
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Where They Are, What They Do
The turbinates are bony extensions within the nose that subdivide it and expose more blood vessels to the passing air. Doctors remove the turbinates from the nose to make breathing easier or when they are diseased. But some patients report more trouble after the surgery.
Sources: Dr. Wellington S. Tichenor; "Anatomy and Physiology"