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Wrong diagnosis

November 25, 2009

A Belgian man who was diagnosed as being comatose for 23 years turned out to have been conscious but trapped in a paralyzed body. Experts say brainwave scans should be standard to avoid others suffering the same fate.

Rom Houben using a computer touch screen
Belgium's Rom Houben can now communicate againImage: AP

Rom Houben was in a car accident in 1983 that left him paralyzed. Doctors diagnosed him as being in a vegetative state. The family of the now 46-year-old believed their son was conscious and pressed for further tests.

A brain scan carried out by University of Liege neurologist Steven Laureys in 2006 revealed that Houben's true condition was locked-in syndrome. That meant his body was paralyzed but the cerebrum of his brain was still intact. Thus Houben was not in a vegetative state, but had been conscious for years.

Rom is learning to speak three years after his misdiagnosis was uncoveredImage: AP

Screaming without a sound

Using a specially-adapted computer to type messages, Houben, an engineering student and martial arts enthusiast at the time of the accident, explained how he was unable to respond to what was happening around him.

"I became the witness to my own suffering as doctors and nurses tried to speak to me and eventually gave up," he told German weekly Der Spiegel.

"I would scream, but no sound would come out. I will never forget the day they finally discovered what was wrong - it was my second birth."

Neurologist Laureys, who wrote about Houben's case in a recently published scientific paper, estimates that up to 40 percent of patients thought to be in a vegetative state could actually be at least partly conscious. In a study of 44 patients who were diagnosed by normal methods as being in a vegetative state, he found that 18 were in some way conscious, and that four actually emerged from their "coma."

"Every patient should be tested at least 10 times before they are categorically defined as 'vegetative,'" Laureys told Der Spiegel.

False hope

Professor Stefan Schwab, director of the Erlangen University Clinic, the largest center for stroke patients in Bavaria, says that Houben's story gives people false hope that their loved ones may also recover miraculously or that they too have been diagnosed incorrectly.

"In Germany at least, most of those patients are being seen by experienced neurophysiologists," Schwab told Deutsche Welle. "I would not say 40 percent of all those patients are misdiagnosed. In my opinion, that is too high a number."

Comatose states are determined according to clinical criteria and the ability of patients to respond to external stimuli, such as voices or heat. If there is no response, the patient is classified as being in a vegetative state or at best is said to have minimal or partial consciousness. Neuro-physiological tests can measure brain activity and provide a more accurate picture than standard tests.

Author: Wilhelmina Lyfft
Editor: Nancy Isenson

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