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Rare Diagnosis: An 'upset stomach' turned out to be an exceedingly rare brain tumor
Washington Post Photo by Lyn Michell
Margaret Welsh (left) was worried about how frail and thin her sister, Carol, had become.
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Published: December 11, 2008
Neither Carol Welsh nor the doctors treating her in Williamsburg, Va., where she was attending business school, could figure out how to fix her stomach trouble.
Welsh had tried to quell the morning attacks of nausea and vomiting that faded as the day progressed. She ate only bland foods. She faithfully took the acid-reducing drugs prescribed by her doctor at the College of William & Mary's student-health center and later, a local gastroenterologist. She wasn't pregnant and didn't have an eating disorder, and doctors had found nothing physical that would explain her symptoms.
Maybe, she thought, the doctors were right. Her problem was the result of stress. But why did she feel better as the day wore on? And why now? She had been a competitive swimmer and top student at Madeira, a private girls' high school in suburban Washington and later at Princeton. She was accustomed to handling pressure.
Welsh's puzzling gastrointestinal problem became a full-fledged crisis on April 19, 2000, a month after her 30th birthday. That was the day she walked into the health center and saw a different doctor from the one who had been treating her for five months.
Minutes after examining her, family practitioner Clifford Henderson was on the phone, urgently arranging for Welsh's immediate admission to Williamsburg Community Hospital for a reason that had nothing to do with her stomach.
"By the time I saw her it was very clear," said Henderson, who examined Welsh because her regular doctor was out that day. "Sometimes it's about being in the right place at the right time" and seeing a patient with a fresh perspective.
But, Henderson added, "one of the things they teach you in medical school is that if you just take the time to listen to patients, they'll tell you what's going on."
Welsh's problems first surfaced in early November 1999, when she awoke feeling nauseated and figured she had contracted a stomach virus. Several weeks later when the symptoms returned, she sought treatment at the student health center. A doctor prescribed over-the-counter medicine to settle her stomach. The likely culprit, she told Welsh, then in the second year of a rigorous MBA program, was stress.
On each return visit to the center, Welsh said, the pattern was the same. Welsh eventually was referred to a gastroenterologist, who suspected drainage from her sinuses was contributing to her symptoms and prescribed different medicines at higher doses. When those didn't help, he performed an endoscopy to check for an ulcer or other cause. Finding nothing, he, too, concluded that her problem was stress-induced.
As the youngest of four daughters of a military family, Welsh had always placed a premium on handling things herself. Immersed in her studies and interviewing for jobs after graduation, Welsh said, she soldiered on, trying to take her doctors' advice, which she described as "pop the pills and you'll be fine."
Sometimes, she said, she suspected something serious might be wrong. She had lost 10 pounds and sometimes felt mentally fuzzy, as though she needed stronger eyeglasses. But then she would have a good day and be able to play tennis.
The weekend before Welsh's illness was correctly diagnosed, she called her older sister in suburban Washington and asked her to come help with her laundry.
Alarmed by the uncharacteristic request, Margaret Welsh drove to Williamsburg and recalled being alarmed by how thin and frail her sister looked.
Carol Welsh had recently developed two new problems -- intermittent hiccups and trouble swallowing. At the health center, Margaret Welsh, convinced that her sister's concerns were being dismissed, insisted on a new doctor.
Carol Welsh recalled, "I literally lurched into the waiting room, and they escorted me right back to an exam room." When she put her head back, she vomited and Henderson was summoned. "She was really sick," he said. "The more she talked, it was pretty evident what it was."
After futile attempts to reach other doctors who could admit her to the hospital, Henderson called a friend, Maurice Murphy, an emergency-room physician. In the ER, Welsh recalled, Murphy listened intently and asked her lots of questions -- about her hiccups, her difficulty swallowing and her vomiting. A neurologist ordered an MRI, which revealed the shocking cause -- a large and extremely rare brain tumor called an ependymoma. "I never had a headache or seizures," Welsh said of the classic signs of many brain tumors.
The slow-growing tumor, which in Welsh's case was benign, develops in the cells that line the ventricles of the brain and spinal cord where cerebrospinal fluid is produced.
To Henderson, the tip-off was Welsh's report that positional changes first thing in the morning triggered her nausea. It meant that the tumor had grown so large that it was obstructing the flow of cerebrospinal fluid in her brain.
A 2006 article in eMedicine, an online medical textbook, notes that the five-year survival rate for ependymomas is about 76 percent in adults and about 14 percent in children. About 1,500 cases are diagnosed annually in the United States, one-third in children younger than 3.
The following day Welsh was in the office of a George Washington University neurosurgeon. "He told me I would have been dead in six weeks," she recalled. Surgery was immediate and grueling, and its aftermath complicated. Welsh, hospitalized for seven weeks, contracted postoperative infections including pneumonia. Her weight withered to 92 pounds on her 5-foot-6 frame.
One risk of any brain tumor is recurrence; Welsh has had two. The first occurred in 2003 and required a second surgery, which removed only 80 percent of the tumor. Removing the rest, she was told, was simply too risky.
She has undergone radiation, along with punishing courses of chemotherapy and steroids that have prevented the tumor from growing. The treatment has left Welsh with deficits. She cannot drive, her speech is slightly slurred, she has trouble walking, and her double vision and chronic headaches appear to be permanent.
"Cognitively I'm not as sharp as I was," she said, a statement that her extremely detailed Web site about brain tumors and her case seems to belie. Currently, Welsh is being treated by a neuroncologist at the National Institutes of Health.
"I'm so grateful I was diagnosed when I was," Welsh said. "I thought that waking up and throwing up all those days was as bad as it gets. But I didn't have any idea what I was in for or what my family was in for."
"All of a sudden, you feel like you're in an avalanche."
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