Coma misdiagnosed

[zzyzx]

http://www.guardian.co.uk/world/2009/nov/23/man-trapped-coma-23-years

Car crash victim trapped in 'coma' for 23 years was consciousParalysed patient could not move or communicate with doctors until Belgian neurologist tested new brain scanner

For 23 years Rom Houben was trapped in his own body, unable to communicate with his doctors or family. They presumed he was in a vegetative state following a near-fatal car crash in 1983.

But then doctors used a state-of-the-art scanning system on the brain of the martial arts enthusiast, which showed it was functioning almost normally.

"I had dreamed myself away," said Houben, now 46, whose real "state" was discovered three years ago and has just been made public by the doctor who rescued him.

Steven Laureys, a neurologist at the University of Liège in Belgium, has published a scientific paper saying Houben could be one of many falsely diagnosed coma cases around the world.

Houben is being cared for at a facility near Brussels and now communicates via a computer with a special keyboard activated with his right hand, which is capable of minimal movement. He said his body was paralysed when he came round after his accident. Although he could hear every word his doctors spoke, he could not communicate with them.

"I screamed, but there was nothing to hear," he said, via his keyboard.

Houben then suffered years of being effectively trapped in his own body as care personnel and doctors at the hospital in Zolder tried to communicate with him, but eventually gave up hope that he would ever come round.

The moment it was discovered he was not in a vegetative state, said Houben, it was like being born again. "I'll never forget the day that they discovered me, it was my second birth."

Experts say Laureys' findings are likely to reopen the debate over when the decision should be made to terminate the lives of those in comas who appear to be unconscious but might have almost fully-functioning brains.

Belgian doctors used an internationally accepted scale to monitor Houben's state over the years. Known as the Glasgow Coma Scale, it requires assessment of the eyes, verbal and motor responses. But they failed to assess him correctly and missed signs that his brain was still functioning.

Laureys, who is head of the coma science group and neurology department at Liège University hospital, concluded coma patients are diagnosed falsely "on a disturbingly regular basis". In around 40% of cases diagnosed as vegetative, more careful examination shows there is still some level of consciousness. He examined 44 patients believed to be in a vegetative state, and found that 18 of them responded to communication.

"Once someone is labelled as being without consciousness, it is very hard to get rid of that," he told Spiegel magazine, calling for a systematic overhaul of the methods of diagnosis.

Laureys said patients who are not fully unconscious can often be treated and are capable of making considerable progress.

Around a fifth of patients who suffer serious head and brain injuries spend more than three weeks in a coma. Of those, between 15% and 25% are, technically speaking, still alive but remain in a state of unconsciousness, never to wake up.

Edited November 23, 2009 by zzyzx

[fireflymedic]

I read this as well earlier today and was fascinated by it. After reading this and some things I've heard from patients that I've talked to later on down their road to recovery makes one really think before they speak ! Hearing is the last thing to go and your patient very well may understand and just not able to respond so watch what you say !

[HERBIE1]

Saw this too.

Can you imagine the horror this guy went through for 23 years?

[akflightmedic]

Which is why I am all for euthanasia and I have a health care POA with my directives clearly spelled out.

Not only would I hate to have lived in this "coma" for 23 years, I would also hate the fact to be "living" like this period.

I rather they had starved me 22 years ago as opposed to the mental hell that he endured and will still endure physically and emotionally.

[VentMedic]

Steven Laureys, the neurologist, has published a few very interesting articles.

http://www.coma.ulg.ac.be/home/steven.html

http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=Search&term=%22Laureys%20S%22%5BAuthor%5D

Further research is always continuing to distinguish conditioned and learned patterns or responses in the brain as they are to be interpreted for the potential to higher function.

http://www.coma.ulg.ac.be/papers/vs/MCS_emotion_Neurology04.pdf

There are also several different levels of a coma that must be assessed for each patient and should also be included in research articles.

http://calder.med.miami.edu/pointis/tbifam/coma1.html

We get several patients with Locked In Syndrome (aka coma vigilante and pseudocoma) sent to our rehab unit if they can manage to open their eyes. We can then sometimes get them back to a higher level of functioning and even some type of communication. However, if they don't open their eyes they may be warehoused in a LTC facility and labeled as comatose.

Edited November 24, 2009 by VentMedic

[HERBIE1]

The take home point I get from this story is that despite all our technology, we still know very little about the human brain. This patient was brought to multiple specialists- even here in the US- by the family because they simply did not accept that he was in a vegetative state. It appears that none of the specialists were able to confirm the family's suspicions(that he was aware of his surroundings)- which apparently turned out to be true.

As was already noted, the next time you have a patient who appears to be in a persistent vegetative state, you never know what they can hear or see.

It does bring an interesting point up- if we are so unsure of the actual level of functioning of a person, how should we treat advanced directive issues? It took 13 years, but this person is now capable of communicating. What if he is able to express his wish to be disconnected from his feeding and that he wants to die? Do we honor that wish?

Although there are rare cases of people waking up from "comas" after years and assuming some level of functionality, the odds are astronomical that this person will ever be anything but totally dependent on others for their needs.

Personally speaking, I would rather be dead.

[zzyzx]

Have you guys seen "The Diving Bell and the Butterfly"? It's true story about a glamorous French magazine editor who has "locked-in syndrome" after suddenly suffering from a massive stroke. He dictates a book by blinking his eyes to a nurse. It's a beautiful movie--I recommend it highly.

[HERBIE1]

Have you guys seen "The Diving Bell and the Butterfly"? It's true story about a glamorous French magazine editor who has "locked-in syndrome" after suddenly suffering from a massive stroke. He dictates a book by blinking his eyes to a nurse. It's a beautiful movie--I recommend it highly.

Sounds like an updated version of Helen Keller's story. I'll look for it.

[zzyzx]

Here's the trailer...It's a bit melodramatic, but the movie isn't like that.

[VentMedic]

That video is not near as melodramatic as some of the personal lives of the patients. As an RRT I have seen of these patients in both the acute: ED, ICU and then Rehab as they are usually on a ventilator and trached. A pontine stroke is usually the cause and most of the patients I have seen are between 35 and 45 y/o. When you see the family's reactions and interactions with the patient, you see the uneasiness and uncertainty. You can see what role the patient has played in their lives and now the adjustment is one of loss but the person is still there. They hang photos of the patient throughout the room to remind the patient of their past life and to remind the staff that the patient had a life before their stroke.

This youtube video shows one of the devices we can now adapt to these patients for communitcation. Here ALS is being called a locked in syndrome which it can be but from a different etiology.

http://www.youtube.com/watch?v=GWe5YVV9dWs&feature=related

The TV show House featured an episode about locked in syndrome and it actually was watchable.

http://housefanblog.com/house-md-seasons/season-5/house-md-5x19-locked-in/

The difference with ALS and Locked in Syndrome is that ALS is progressive neurological disease that attacks the nerve cells and will cause death not too long after onset. A pontine stroke patient may be able to be rehabilitated to where they can move around in a wheel chair with either head or hand controls. With the computer device some can at least communicate. For either patient we try to give them some potential (as insurance and government resources allow) to have whatever quality possible in their lives. Those with locked in syndrome will sometimes say by some form of communication it is worth it if they can just see their kids grow up, graduate from something and maybe see some grand babies. They become a spectator to life but to some it is worth it. Thus, not always do some want to end it all even when one might say that now. Life changes and so do people when faced with different situations at different times in one's life.

Edited November 25, 2009 by VentMedic