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A brain disorder in seniors too often misdiagnosed

July 13, 2015 | Kristina Lindgren

Nguyet Nguyen’s family first began to worry about her increasing forgetfulness in 2013. By spring 2014, the otherwise healthy octogenarian who enjoyed weekly ballroom dancing began to shuffle when she walked.

By autumn 2014, the Huntington Beach resident couldn’t remember what she’d said or done just minutes earlier and she was falling almost daily.

To her husband, a psychiatrist, and her daughter, a medical school graduate, Nguyen’s symptoms raised the specter of Parkinson’s disease.

To UCI Health neurosurgeon Jefferson Chen, MD, PhD, however, she displayed the classic symptoms of a neurodegenerative disorder known as normal pressure hydrocephalus, or NPH.

It occurs when a buildup of cerebrospinal fluid puts pressure on delicate brain tissue that affects memory and control of motor and bodily functions, such as walking and urination.

A treatable disorder

NPH is frequently mistaken for Alzheimer’s disease or Parkinson’s, Chen says. Unlike those diseases, NPH can be cured – and its effects on the brain and nervous system can be reversed, if treated early.

“When you see signs of memory loss, problems walking and loss of bladder control, you need to tune into NPH as a possible cause,” said Chen, a leading expert in a neurosurgical procedure to alleviate the fluid buildup and a member of the medical advisory board of the National Hydrocephalus Foundation.

Conservative estimates suggest that more than half a million Americans over the age of 55 suffer from undiagnosed NPH, including at least 10,000 people in Orange County alone, he said. But few family practitioners — usually the first doctors to see the symptoms — are trained to look for NPH, whose cause is unknown. Even some neurologists are unaware of the condition, which is difficult to detect.

Excess fluid is hard to detect

Nguyen’s husband, Niem Ton-That, a former health minister in South Vietnam until the fall of Saigon in April 1975, contacted neurologist Dr. Nguyen Thong, a friend and fellow refugee, who examined Nguyen. He ordered an MRI to see whether the ventricle cavities in her brain were enlarged, a telltale sign of NPH. They were.

“We were so happy it wasn’t Parkinson’s,” recalled Nguyen’s daughter, Que Phuong Dang. Next the family’s search for an NPH expert led them to Chen and UCI Health.

Chen ordered another MRI, this one capable of charting the flow of cerebrospinal fluid (CSF) in the brain and any unusual buildup, a test not available elsewhere in Orange County. After confirming the NPH diagnosis, Chen performed surgery in early November to implant a shunt in Nguyen’s skull that drained excess CSF through a narrow tube threaded along her neck and into her abdominal cavity, to be absorbed by the body.

Steady improvement

Within a few days of coming home, Nguyen’s wide-gaited shuffle was replaced by small hesitant steps. Within a few weeks, she was able to raise her legs and feet and walk normally again. Her short-term memory is improving, albeit more slowly. After another MRI in April, Chen was confident that his patient’s NPH was under control.

Chen has adjusted the valve controlling the flow of Nguyen’s shunt once, a measure of the technical improvements in shunt-and-valve systems since the early days of NPH treatment. He is pleased with her progress. So is Nguyen, now 81, who has thanked him repeatedly for her recovery.

“I can walk easily now,” Nguyen declared after a recent checkup. “And I can dance again!”

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