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"