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An Imposter Disease

It Looks Like Alzheimer’s or Parkinson’s Disease, but Is It?

Mysterious condition is often misdiagnosed

Eckermann displayed the classic triad of NPH symptoms: unsteady gait, progressive dementia and urinary problems, typically incontinence. The problem is that each of these symptoms also occurs in patients with dozens of other disorders. But in Eckermann’s case, the MRI showed that parts of his brain were greatly enlarged and filled with fluid, bolstering the NPH diagnosis.

The doctor recommended he undergo an evaluation at Virginia Commonwealth University in Richmond, which has an internationally famous NPH treatment program headed by Young.

After reviewing Eckermann’s records, the Richmond team agreed to see him for an evaluation.

The first test would determine whether Eckermann had NPH and if it could be treated. It involved an injection in the spine that measured changes in pressure. In a second test lasting three days, doctors would place a temporary shunt in Eckermann’s back to siphon fluid from his brain. If there was no improvement, it might mean the problem had progressed too far for surgical intervention. “If they walk better or think better at the end of two or three days,” Young says, “we think they have a 90 percent chance of getting better with a [permanent] shunt.”

It was clear after the second test that Eckermann could think and walk better. A urologist also determined that his urinary problems had a neurological basis and Young’s team decided he was a candidate for a permanent shunt.

In March 2008 Young and his team wheeled Eckermann into the operating room to install the shunt, which drains excess fluid from the brain into the abdomen, where it is reabsorbed. Periodic adjustments to the shunt are made externally using a magnet.

“He came out of the operating room smiling, and you could just tell” he was better, Ginger Eckermann recalls, choking up at the memory. “My daughter hugged me and said, ‘We have Dad back.’ ”

While all surgery, especially brain surgery, involves risk, shunting “is one of the safest operations we do in neurosurgery,” Young says. The complication rate at Virginia Commonwealth is about 8 percent, according to its statistics. Typically the shunt does not need to be replaced.

But the effectiveness of shunt surgery is a matter of debate. A 2002 report by the Cochrane Collaboration, a respected British group that analyzes medical research, found that the use of shunts for NPH was ineffective in a randomized, controlled trial comparing those who received the device with those who did not. NINDS considers shunting effective for selected NPH patients, according to its website.

Young says that although Eckermann experienced significant improvement, some patients make only temporary gains or turn out to have more than one problem, such as Parkinson’s disease as well as NPH.

“We need to educate doctors and the public about the disorder,” says Young. Some experts estimate that NPH affects 1 to 2 percent of the general population. “It’s worth looking for.”

Young recalls one patient, a prominent Richmond physician who had been confined to a nursing home, confused and nearly bedridden. Six months after the man underwent shunt surgery, Young was attending a medical conference when someone tapped him on the shoulder. It was his patient, fully recovered, who was also at the meeting.

Eckermann says he regards his treatment as “miraculous.” His daughter agrees. “He got his life back, and we have him back,” she says. “I just worry there are people out there suffering who don’t have to.”

Sandra G. Boodman, a former staff writer for the Washington Post, writes regularly about health for the Post and Kaiser Heath News.

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