Doctors changed diagnosis after woman said allergies weren't causing runny nose

By Sandra G. Boodman
Special to The Washington Post
Tuesday, January 19, 2010; HE01

Rebecca Yates was sick of sounding like a broken record -- and tired of getting the same response from the internist at her HMO.

For more than a year, the retired licensed practical nurse said, she had been complaining about a constant drippy nose. Each time she was told that her problem was allergic rhinitis: a runny nose caused by allergies. But none of the decongestants, antihistamines or other drugs she was prescribed helped. The drip had gotten so bad that Yates had to insert twisted cotton up her nose to absorb it while she cooked. Once, she recalled, a stranger told her to wipe her nose.

"It was very embarrassing," Yates recalled. "And it had been going on for so long. I knew something was just not right."

Until March 10, 2009, Yates found the problem more annoying than alarming.

That morning, while eating breakfast with her husband at their Landover home, she received a shocking telephone call from a specialist that revealed the cause of the drip -- and the proposed remedy.

Not only did she have a problem far more serious than allergies, Kaiser Permanente allergist Geoffrey Greene told Yates, but she would need surgery quickly.

"It's not the first thing I think of with a patient with a runny nose," Greene said.

* * *

Yates, now 61, said her drippy nose began suddenly in October 2007 and seemed a bit unusual. She did not have a cold, the fluid was clear and it was limited to her left nostril. After two weeks, she went to see her primary-care doctor, who prescribed the first round of drugs. But as the months elapsed, the drip showed no sign of abating. She said the internist did not seem especially concerned and kept switching her medications, once telling her that some patients never get over rhinitis.

Yates, whose nose became raw and painful because she wiped it so often, estimates that she mentioned it to the doctor six times. During an appointment on Jan. 6, 2009, Yates said, she insisted on a referral to a specialist. "I said, 'How can you treat me for allergies when no one's tested me? What am I allergic to?' " Yates said she had not previously been given a diagnosis of allergies.

The ear, nose and throat specialist whom Yates saw in late January told her to continue taking Zyrtec, the most recently prescribed antihistamine, and added Atrovent, a medicine primarily used to treat lung problems. The ENT also authorized an appointment with Greene for an allergy evaluation.

Greene remembers the Feb. 25 visit, the only time he saw Yates. He was fairly certain the cause was not allergies. "She had no itching or sneezing, her problem wasn't seasonal, and it wasn't worse in the morning," all of which Greene said are characteristic of allergies.

Greene suspected he knew what might be wrong. He asked Yates whether she had been in a car accident or had received a blow to the head. She said no. He ordered blood and skin tests for allergies and, unable to collect enough of the discharge during the visit, gave Yates a small vial to take home. He told her to freeze a sample and then take it to the lab.

A week later, the allergy test results came back negative, just as Greene expected. A few days later, the lab notified Greene with the results of the nasal fluid test, confirming his hunch.

The liquid that had been seeping out of Yates's nose for nearly 18 months was not mucus. It was spinal fluid.

Greene said he doesn't remember the ensuing telephone conversation, which Yates says she will never forget.

"He said, 'Mrs. Yates, are you home by yourself?' " she recalled. When she told Greene her husband was with her, the allergist told her that the fluid came back "100 percent positive for a CSF [cerebrospinal fluid] leak, and you're going to have to have brain surgery."

Yates immediately burst into tears.

A CSF leak is usually caused by a blow to the head -- actor George Clooney suffered one while filming a torture scene in the 2005 movie "Syriana" -- but sometimes develops for no apparent reason. It occurs when the fluid that bathes the brain and spinal cord leaks through a hole in the dura, the membrane that surrounds them, typically causing a splitting headache or the discharge of clear fluid through the nose. Many cases resolve in a few days with rest and without treatment; sometimes surgery is required. The chief risk of an untreated CSF leak is bacterial meningitis, which can result in brain damage.

Because Yates needed specialized surgery that Kaiser Permanente does not provide, she was referred to Ameet Singh, who along with neurosurgeon Fabio Roberti directs George Washington University Hospital's endoscopic pituitary and skull base surgery program. Singh soon discovered through further testing that Yates's problem was more complicated than a CSF leak: Brain tissue was protruding through her skull, creating an encephalocele. Singh said the prolonged high pressure from Yates's spinal fluid had thinned a portion of her skull, allowing brain tissue to break through into her sphenoid sinus cavity and displace her pituitary gland.

Singh said he suspected that Yates had suffered from elevated spinal fluid pressure for several years, for reasons that remain unclear. One possible cause, he said, is excess body weight. Yates says she lost 40 pounds and, at Singh's urging, is trying to lose 20 more to help lower her spinal fluid pressure, which remains elevated.

The source of the leak was located in the center of her head, a difficult place to reach surgically. A decade ago it would have meant cutting into her skull, Singh said, but new techniques permitted doctors to access the site through her nose. The approach offers a much faster recovery. Surgery involved removing the protruding, nonfunctional brain matter and patching the leak using tissue from Yates's nasal septum and leg.

A 2004 report by Italian surgeons in the journal Minimally Invasive Neurosurgery described four patients, three of them women and none of whom reported previous head trauma, who underwent a similar procedure. All had suffered from a CSF leak for periods ranging from five months to 18 years.

Singh described the March 26 operation as "extremely challenging" and more complicated than expected; one of Yates's lungs collapsed during the operation. The delayed diagnosis, he said, is "unfortunately typical. CSF leaks are commonly overlooked. Every runny nose is not an allergy," he added, particularly when drainage is clear and occurs on only one side, classic signs of a leak.

Kaiser Permanente officials, asked about the time it took to diagnose Yates's condition, issued a statement saying that Yates had been treated for "mild allergies and bronchitis for several years" by Kaiser physicians. "In January 2009, presenting with different symptoms than before, her primary care physician referred her" to specialists who found the problem and ensured "she received the appropriate care."

Yates, who spent 11 days in the hospital, said she has fully recovered, although she suffers some leg pain from where the tissue used for the patch was harvested. Both she and Singh regard the surgery as a success; Yates suffered no neurological problems.

Yates credits her strong religious faith, the support of her family, and the care she received from Greene and Singh with helping her weather the ordeal.

The experience changed her. These days, she says, "I cry at the drop of a hat. Dr. Singh said, 'It's about what you've gone through.' "

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