ST. LOUIS — Every three years or so, after yet another operation for chronic sinusitis, Trindle Hough can smell the world around her.
This sensation lasts only a few weeks, and then Hough's sinuses close again. Each time, before that happens, she wants to eat everything because the ability to smell enhances the taste of food. She goes on a sniff rampage, too, smelling flowers, soaps and perfumes, and even her friends' hair, which, she says, causes a few rolled eyes.
"I do this so I can remember," said Hough, a probation and parole officer. "I hate that I can't smell."
Losing her sense of smell to a constantly clogged nose isn't the only hardship that Hough, 32, has to endure. She was 17 when she had her first of many surgeries to clear mucous from the sinus cavities. Hough said she can't remember how many surgeries she's had but added she thinks it's around eight.
At one point, her doctors in Springfield, Ill., refused to do any more surgery because so much scar tissue had built up in her sinus cavities. They recommended that she travel to specialists in St. Louis for surgery. Facial bones around the sinuses are thin and easy to damage over repeated operations to clean out diseased tissue. These days, she commutes to St. Louis University School of Medicine to see Thomas Sanford, an ear nose and throat specialist, for treatment.
Acute sinus infections start with a virus, which leads to swelling in the nose and surrounding spaces. Because of the swelling, the body can't clear mucous well and bacteria multiply until infection takes hold. Such acute infections usually last a few weeks and go away after antibiotic treatment.
As the name implies, chronic sinusitis is a chronic disease, and it's incurable.
Hough is far from alone in her misery: About 12 percent of Americans under age 45 have symptoms of chronic sinusitis. Sanford said about one-third of the patients he sees in the clinic suffer as Hough does, with as many as four sinus infections a year and few options for relief.
"We call them sinus cripples because their lives are affected by the symptoms of sinuses and a nasal cavity that is not running well," Sanford said.
Researchers don't know whether chronic sinusitis is caused by an infection that won't go away or from inflammation gone haywire. Because the nose, throat and ear cavities are connected, they share bacteria, fungi and viruses; something irritating the nose could potentially trigger a reaction in the lung, or vice versa.
To figure out what might be in the nose that could lead to chronic sinusitis, Sanford teamed up with SLU immunologist Rajeev Aurora. The team is trying to biologically characterize these chronic infections, but so far, early results from their studies have left them puzzled.
The team compared 25 healthy people with 25 patients whose sinusitis hasn't responded to any of the standard treatments — antibiotics, surgery and oral steroids such as Prednisone. The researchers took samples from a region of the sinus called the middle miatus — a cavity right below the eyes — by squirting salt water into people's nostrils and gently sucking it back out.
They wanted to find out whether there were different types of bacteria growing between the two groups. The results haven't been published yet, but Aurora says the types of bacteria between people with chronic and the healthy control group were similar. Sanford and Aurora both say that they were surprised by the results because they expected to see disease-causing bacteria in the washes from people with chronic sinusitis.
Aurora and Sanford have measured higher levels of immune proteins in the chronic sinusitis group, and they want to probe into cavities seated deeper in the sinuses. They also want to look at whether different types of white blood cells provoke the immune system.
"We are just scratching the surface of a complicated set of interactions," Aurora said.
Hough said that living with a chronic disease is like having a second job. Every day she takes allergy medication, uses nasal steroids and takes lots of Tylenol for sinus headaches. She has constant drainage in her throat. She also flushes her sinuses daily.
Hough never gets a good night's sleep because she can't breathe through her nose, and she has mild sleep apnea. Every sinus surgery keeps her out of work for at least one week.
Hough's most recent surgery, on Oct. 5, kept her out of work for one and a half weeks.
"My friends and co-workers don't understand that it's a full-time struggle; people get frustrated because I don't feel well and I miss work. (They don't understand) that a sinus infection affects the way I live every day," Hough said. "It's a horrible way to live."