Health mystery: Headaches, weight gain and a series of misdiagnoses

Posted Jan. 29, 2013, at 9:42 a.m.

Still clutching his discharge instructions from a suburban Maryland emergency room, Brian Harms struggled to make sense of what the neurosurgeon was saying. The ER staff had told Harms, admitted hours earlier, that his diagnoses were headache and vertigo and that he should go home and rest. A CT scan had found a benign cyst in his brain, but the staff didn’t convey any urgency about treating it.

As the 29-year-old College Park, Md., resident was gathering his things, a neurosurgeon rushed in, telling Harms he would not be going home.

“I need to get this information to you quickly,” Harms remembers the specialist telling him on the morning of Sept. 28, 2011. “You are in a lot of trouble, and you need surgery as soon as possible.” The neurosurgeon had been trying to arrange a transfer to Johns Hopkins Hospital in Baltimore, but doctors were worried that he might die en route. “I highly suggest you trust me and let me do this procedure here,” Harms remembers the surgeon telling him, but the decision was his.

For Harms, who had seen several doctors for headaches and other symptoms during the previous 18 months, the news was beyond shocking. “It felt like the floor dropped out beneath me,” he recalled. “I was scared witless.”

Only later would Harms, a University of Maryland doctoral candidate in geochemistry, learn how lucky he was to have survived both a series of misdiagnoses and a test, performed hours before his emergency surgery, that could have killed him.

In November 2010, Harms began feeling as if he had a low-grade flu. His weight, a problem since childhood, seemed harder to control, and he began packing extra pounds onto his 6-foot, 280-pound frame, even though he wasn’t eating more than usual.

Harms consulted an endocrinologist. Tests showed that his thyroid seemed sluggish and his liver enzymes were elevated, a finding that can result from multiple medical problems, including obesity. The endocrinologist referred him to a gastroenterologist, who decided that his liver enzymes were high because Harms was “too fat.” Come back when you’ve lost 30 pounds, Harms said the specialist told him, and we’ll retest your liver.

In January 2011, Harms felt so exhausted that he went to a Montgomery County, Md., emergency room. His blood pressure was alarmingly high, and he had intermittent spots in his vision. The ER doctor found nothing: An eye exam didn’t reveal anything amiss, while a test for mononucleosis, a viral infection that can cause prolonged fatigue, was negative and other blood tests were normal. Harms was discharged with a diagnosis of fatigue.

For the next few months, the fatigue and headaches seemed to come and go, but Harms’s weight kept creeping up, despite his efforts to control it. He was working out five days a week at a gym and playing basketball, in addition to curbing his calories.

Harms soldiered on, trying to ignore his physical ailments and concentrate on his studies.

By August 2011, his headaches, which seemed concentrated on alternating sides, were at their worst when he woke up in the morning or when he changed position. At times, he felt so dizzy he had to hold on to something to keep his balance.

He saw his regular family physician, who conducted a simple neurological exam and told Harms he thought his problem was most likely a tension headache. He prescribed extra-strength naproxen, a pain reliever, and told Harms to come back if he wasn’t feeling better in a few weeks.

Because Harms was preparing for his Ph.D. qualifying exams, he took the pills and hoped the headache would finally go away. Perhaps, he thought, he was just severely stressed — or a hypochondriac. “Maybe I’m going crazy,” he remembers thinking.

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On the evening of Sept. 27, while working late at a university lab, he felt particularly awful. His headache and dizziness resembled a terrible hangover, he had great difficulty walking and he noticed black spots on his hand that did not wash off. Alarmed, he called his twin brother, a medical student in Oklahoma.

Harms said his brother thought the spots might signify internal bleeding and told him to go straight to an emergency room. He called a friend, who drove him to the hospital, which he later called “the most important decision of my life.” While waiting to see a doctor, Harms said, he sheepishly realized that the symptom that had freaked him out — the black spots — were stains left by silver nitrate, a chemical commonly used in the lab. “I felt so foolish,” he said. “I considered leaving the hospital then; I couldn’t believe I hadn’t known what they were.”

But a doctor who wanted to further investigate the headache and balance problems ordered a CT scan of his head “just to be safe.” The results were startling: Doctors told Harms that they had found a benign cyst deep in his brain and that he should follow up with his doctor. Harms said the advice was matter-of-fact.

Because he was concerned about Harms’ headache, a doctor ordered a spinal tap to rule out meningitis. After the test showed no sign of infection in his spinal fluid, Harms said, he was handed discharge instructions for headache and vertigo and told he would be going home.

“I remember feeling baffled, like how can they discharge me with a benign brain tumor?” Harms recalled. He said he felt intensely nauseated and somewhat disoriented after the spinal tap. As he prepared to leave the ER, a neurosurgeon made a beeline for his bedside.

Because it was abnormal, Harms’ CT scan had been flagged for the specialist to read — after the spinal tap had been performed. The neurosurgeon determined that the growth was a colloid cyst that had grown so large it was blocking the ventricles, fluid-filled spaces in the brain. The blockage had caused hydrocephalus, a dangerous accumulation of cerebrospinal fluid that was increasing the pressure on Harms’ brain, causing his headache, vertigo and other problems.

To complicate matters, Harms had undergone a spinal tap, a procedure that should never be performed in colloid cyst patients. The procedure increases the risk of brain herniation, an often fatal event that occurs when tissue or fluid in the brain is shifted from its usual position.

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Harms said the brain surgeon told him he had two choices: undergo an emergency operation to relieve the pressure on his brain at the community hospital or risk a transfer to Hopkins, which was less than an hour away. The neurosurgeon told Harms he wasn’t sure he would make it to Baltimore. Patients with a condition as precarious as his sometimes died en route. After talking by phone with his father in Oklahoma, Harms agreed to allow the surgeon to implant a shunt in his brain to relieve the hydrocephalus; after he was stabilized, he would be moved to Hopkins for surgery to remove the cyst.

Colloid cysts, estimated to affect about three in every million people, are rare growths, typically located near the center of the brain, that are probably present at birth, according to Medscape. They account for fewer than 1 percent of brain tumors; most are found incidentally in adults between the ages of 30 and 60 and many don’t cause problems — or symptoms — unless they become too large and cause obstructive hydocephalus.

In Harms’ case, the pressure on his brain was so elevated, according to his medical records, that “the [cerebrospinal fluid] literally ejected from the top of the catheter in a projectile stream of approximately 6 cm high.”

Three days after the shunt procedure, Harms was transferred to Hopkins. He spent the next 15 days there, undergoing two surgeries, the first of which was aborted because the cyst could not be extracted safely.

The operation was particularly difficult, said neurosurgeon Daniele Rigamonti, who led a team of specialists, because Harms’ cyst, roughly the size of a marble, was hard and fibrous, and could not be removed easily. The surgical team had to balance a desire to excise the cyst with the risk of seriously damaging Harms’ memory.

“You have to be extremely careful,” said Rigamonti, a professor of neurosurgery, because one false move could “be a disaster.”

Rigamonti said he was not surprised that the doctors Harms consulted for more than a year before seeing a neurosurgeon missed the cyst; his most prominent symptoms — fatigue and headache — usually have much more prosaic causes.

“A colloid cyst is a fairly rare condition,” said Rigamonti, who has treated about 25 cases during his career. Harms said he wishes that his doctors had not been so quick to attribute his symptoms to stress or his ballooning weight, which was a sign of the metabolic problems caused by the cyst, and that they had ordered a CT scan earlier.

Although his surgery was a success, Harms’ recovery has taken longer than he anticipated. He subsequently developed seizures, which he manages with medication.

“The most difficult thing to adjust to is that my recovery is going to take a long time,” said Harms, who is still on track to complete his doctorate. “You don’t come out as spry — you reach a new normal.” His close friendship with another brain tumor patient and work with a colloid cyst survivors group on Facebook has been invaluable in his recovery, Harm added.

“A brain tumor is not a death sentence,” he said. “What is a death sentence is ignoring it. Don’t give up when you know something is wrong.”

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