Victims of Nose Ills Try to Make Scents of it All

“Sense of smell?” he says. “I never gave it a thought. You don’t normally give it a thought. But when I lost it--it was like being struck blind. Life lost a good deal of its savor . . . My whole world was suddenly radically poorer.”

--From “The Man who Mistook His Wife for a Hat,”

by Oliver Sacks

They are the afterthoughts on the road to Oz, searching not for a heart or brain but for a sense of smell. They come to San Diego from across the Western United States to have their noses peered into and probed and scraped and scanned.

There are women who haven’t smelled their Christmas turkey in years. Men falter, trying to express how the pleasures of love have diminished. There are people haunted by phantom odors, and people for whom everything smells like chemicals.

“Most of the people have lost their sense of smell for anywhere from 1 to 15 years,” said Dr. Terence Davidson of UC San Diego Medical Center. “They’ve all been to multiple physicians, all of whom have said, ‘Yeah, your smell is gone. Don’t worry about it.’

“It’s not done heartlessly,” he said. “You’ve got to talk to 60 women who can’t smell Thanksgiving dinner. You’ve got to talk to someone who can’t smell their baby any more. And then you start to understand the emotions of this. It’s not like losing a limb. But it is real.”

Davidson is director of the Nasal Dysfunction Clinic at UCSD, one of only a handful of such clinics in the United States that have recently begun exploring the little-understood phenomenon of loss of smell, believed to afflict 2 million people nationwide.

Next month, the Western Journal of Medicine is to publish Davidson’s first report of his findings, based on 63 of the clinic’s patients. In it, Davidson and his colleagues report that their patients unanimously found the loss of smell a “major disability.”

Total Loss of Smell

Some suffered from anosmia, or the complete loss of smell, Davidson said. For others, their sensitivity was diminished or distorted or triggered unprovoked. For most, their first warning was what they took for loss of taste: Suddenly, everything seemed bland.

“The majority of our perception of food comes from its smell, not its chemical taste,” Davidson said. “Real taste is the tongue’s ability to detect sweet, sour, salt and bitter. Unfortunately, in the English language, we don’t really differentiate.”

The causes included infections, allergies, viruses and trauma, such as a severe blow to the head, Davidson and his colleagues found. Seven patients lost their sense of smell from exposure to toxins like ammonia, photo-developing chemicals and hairdressing chemicals.

For a few, the problem was congenital. For three, it was psychological.

Only in a fraction of the cases could the problem be treated; for example, inflammations were treated with steroid hormones. In many cases, the loss appeared to be permanent. In those cases, Davidson said, the aim is to enable people to accept their fate.

For them, pleasure in consuming food may depend on spices and hot sauces, which act on the taste buds on the tongue instead of the olfactory receptors in the nose. Davidson encourages them to savor the texture and appearance of food once the flavor is out of reach.

For a few, some satisfaction lingers in memories of smells. Oliver Sacks, the British neurologist and author, called it “a veritable osmalgia,” a nostalgic yearning for lost odors powerful enough to seem to bring them back.

“I keep thinking I smell something because I remember it,” said Frances Verbest, a Poway woman who has not tasted anything since a year ago Christmas. “What I have to do is eat and cook by ear. I just have to use my imagination.”

The sense of smell is poorly understood, because of its complexity and because of the traditional view that it is relatively insignificant. Medical educations have included little about the nose, and until the late 1970s, little money was available for research.

Yet smell is intimately connected to memory and emotions, perhaps it is a particular function of the area of the brain where olfactory information is received. Davidson recalled how the smell of an old family camping shed “brings back this phenomenal flood of emotions.”

About half a dozen centers in the United States, most on the East Coast, are studying nasal function. According to Davidson, UCSD’s 3-year-old clinic is the only one west of Denver.

“There are some very basic science questions about the sense of smell that are as yet unanswered,” said Claire Murphy, a psychologist who works with Davidson. “And that’s not true about other sensory systems. We still don’t know how it is the olfactory system codes information about the quality of odor. Can you imagine someone in vision saying we don’t know how it is that we tell the difference between red and blue?”

An odor is sensed when volatile molecules are sniffed and enter a person’s nasal passages. There, they meet the mucous-coated epithelium, or lining of the nasal passages. They attach to minute, hairlike cilia, sending impulses through nerve cells to the brain.

That process can be disrupted at any stage--by a blockage in the nasal passage, or damage to the sensitive lining or to the brain. A head injury can shear the olfactory nerves. A virus can destroy the nasal olfactory cells.

At the UCSD Medical Center clinic, the first phase of analysis falls to Murphy, a psychologist who specializes in the psychological response to physical stimuli. Her tools are a set of opaque polyethylene bottles containing 10 everyday scents.

First, Murphy conducts a threshold test, checking a patient’s ability to detect different concentrations of the same odor. Next comes an odor identification test. Scores are calculated for each nostril: 90 to 100 is considered normal, zero to 10 anosmic.

“One common story is that the person had a very bad cold . . . and that they lost their sense of smell after the cold and it never came back,” Murphy said. Some suffer from phantosmia, or phantom odors, or parosmia, when everything has the same bad smell.

“You present an orange and it has an off-odor,” said Murphy, who said the odor is often a chemical smell. “You might present an orange, an orchid and some gasoline, and all of them would have the same off-odor.”

Across the hall, Alfredo Jalowayski, the team’s respiratory physiologist, seats the patient in an olive-drab dental chair and escalates it to eye level. Jalowayski’s bailiwick is rhinomanometry, measurement of air pressure and flow through the nose.

His tools are instruments for measuring lung physiology, adapted by him to measure nasal function. Patients breathe through small glass tubes attached to a “nasal airway resistance computer” that generates a printout of a person’s “inspiratory and expiratory flow.”

By studying the red lines etched by the computer onto the graph paper, Jalowayski can detect an obstruction on either side of the nose. Applying a decongestant and remeasuring, he can determine whether the blockage is an inflammation or a more permanent problem, like a deviated septum.

Jalowayski also has invented a small plastic scraper, called a Rhino-probe, for taking samples of nasal epithelial cells for analysis. He said that, in the past, doctors studied only secretions, and that studying cells as well can improve diagnosis 90%.

The cell scrapings are stained bluish purple and studied under a microscope, where Jalowayski can detect allergic conditions, viral infections and the presence of bacteria.

Finally, the patients are examined by Davidson, a surgeon who became interested in noses by doing cosmetic nasal surgery. Using telescopic tubing, Davidson is able to see whether the crucial epithelium is normal or whether it has been scarred or destroyed.

If necessary, a CT scan is used to study the sinuses and look for tumors in the nose or brain.

In the study to be published next month, the team found that 41 of the 63 patients studied had either inflammations or viral problems. Trauma, toxins, congenital defects and psychiatric problems accounted for most of the remainder.

In an interview last week, Davidson estimated that his clinic is able to reverse or reduce the smell problem in one-third to one-half of all patients. For the rest, he said an accurate diagnosis of their problem may finally enable them to come to terms with the loss of smell.

The problem is most upsetting to people like Frances Verbest.

“I always had a very acute sense of smell and taste. Ask anybody,” said Verbest, who attended the clinic last summer. “I love to cook and I love to eat. Now I can’t do either. It’s terrible.”

Verbest said her sense of smell had faded periodically. She suspected that the cause was medication, but it had always returned. Then, during the week of Christmas 1985, she felt it disappearing again. Since then, she has smelled and tasted nothing.

Davidson said: “They speak of the tragedy of cooking a Thanksgiving dinner that has been one of the most important family events of their life. . . . All of a sudden, it’s flat. Not only that, they don’t even know when they are burning the pots.”

The loss of smell also is especially troubling to people for whom sex is very important.

“They’re aware that they’ve lost something,” said Davidson, noting that olfaction plays an important role in sex. “Sometimes it’s not as clearly stated and the patient doesn’t have it as clearly defined. But they know it’s gone.”

The replacements for the loss may seem like small consolation.

Davidson and his colleagues encourage their patients to focus on other qualities in food.

They also suggest foods that stimulate the trigeminal nerve, which carries senses like hot, cold and prickliness to the brain. Those include horseradish, pepper, ginger, cloves, spearmint, cinnamon and pimento.

Finally, Davidson and his colleagues urge anosmic patients to get smoke and gas-leak detectors to warn them of dangers they are unable to sense. They advise great care to avoid food that might be spoiled or rotten.

Frances Verbest is one of the unlucky ones.

In the end, she said, she was told that olfactory cells in her nose had been destroyed--an explanation she finds unconvincing. Unwilling to give up searching for help, she plans to consult a nutritionist. She thinks her problem is “a chemical imbalance.”

“I did finally get my sense of humor back,” she mused. “It’s really a miserable experience. But if I have to have something in my ‘Golden Years,’ I suppose I would rather have this than not be able to get around. Otherwise, I have perfect health.”

Then she added, “Yes, I know one gal, she gets hers back. She can taste Scotch.”