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Un homme qu'on croyait dans le coma pendant 23 ans...


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'I screamed, but there was nothing to hear':

Man trapped in 23-year 'coma' reveals horror of being unable to tell doctors he was conscious

A car crash victim has spoken of the horror he endured for 23 years after he was misdiagnosed as being in a coma when he was conscious the whole time. Rom Houben, trapped in his paralysed body after a car crash, described his real-life nightmare as he screamed to doctors that he could hear them - but could make no sound.

'I screamed, but there was nothing to hear,' said Mr Houben, now 46, who doctors thought was in a persistent vegatative state. 'I dreamed myself away,' he added, tapping his tale out with the aid of a computer.

Doctors used a range of coma tests before reluctantly concluding that his consciousness was 'extinct'. But three years ago, new hi-tech scans showed his brain was still functioning almost completely normally. Mr Houben described the moment as 'my second birth'. Therapy has since allowed him to tap out messages on a computer screen. Mr Houben said: 'All that time I just literally dreamed of a better life. Frustration is too small a word to describe what I felt.'

His case has only just been revealed in a scientific paper released by the man who 'saved' him, top neurological expert Dr Steven Laureys. 'Medical advances caught up with him,' said Dr Laureys, who believes there may be many similar cases of false comas around the world. The disclosure will also renew the right-to-die debate over whether people in comas are truly unconscious.

Mr Houben, a former martial arts enthusiast, was paralysed in 1983. Doctors in Zolder, Belgium, used the internationally accepted Glasgow Coma Scale to assess his eye, verbal and motor responses. But each time he was graded incorrectly. Only a re-evaluation of his case at the University of Liege discovered that he had lost control of his body but was still fully aware of what was happening.

He is never likely to leave hospital, but as well as his computer he now has a special device above his bed which lets him read books while lying down. Mr Houben said: 'I shall never forget the day when they discovered what was truly wrong with me - it was my second birth. 'I want to read, talk with my friends via the computer and enjoy my life now that people know I am not dead.'

Dr Laureys's new study claims that patients classed as in a vegetative state are often misdiagnosed. 'Anyone who bears the stamp of "unconscious" just one time hardly ever gets rid of it again,' he said. The doctor, who leads the Coma Science Group and Department of Neurology at Liege University Hospital, found Mr Houben's brain was still working by using state-of-the-art imaging. He plans to use the case to highlight what he considers may be similar examples around the world.

Dr Laureys said: 'In Germany alone each year some 100,000 people suffer from severe traumatic brain injury. 'About 20,000 are followed by a coma of three weeks or longer. Some of them die, others regain health. 'But an estimated 3,000 to 5,000 people a year remain trapped in an intermediate stage - they go on living without ever coming back again.'

Supporters of euthanasia and assisted suicide argue that people who have lain in persistent vegetative states for years should be given the opportunity to have crucial medical support withdrawn because of the 'indignity' of their condition. But there have been several cases in which people judged to be in vegetative states or deep comas have recovered.

Twenty years ago, Carrie Coons, an 86-year-old from New York, regained consciousness after a year, took small amounts of food by mouth and engaged in conversation. Only days before her recovery, a judge had granted her family's request for the removal of the feeding tube which had been keeping her alive.

In the UK in 1993, doctors switched off the life support system keeping alive Tony Bland, a 22-year- old who had been in a coma for three years following the Hillsborough disaster.

Dr Laureys was not available for comment yesterday and it is not clear why he thought Mr Houben should have the hi-tech screening when so many years had passed.

En lisant les commentaires du gars, il a l'air relativement sain d'esprit, ce que je trouve assez surprenant.

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Ben, si il était aussi conscient qu'il le prétend ainsi que les derniers test le prétendent "new hi-tech scans showed his brain was still functioning almost completely normally", c'est seulement son corps qui est paralysé, et donc, pendant les 23 ans, il était conscient de son état, de ce qui se passait autour de lui, mais n'arrivait à l'exprimer d'aucune façon. C'est vraiment triste. Imaginez-vous une seconde à sa place, sans être capable de bouger, de parler, de respirer par lui-même, ça ne doit pas être évident.

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Ça me rappelle cette chanson.

Moi ça me rappelle le directeur Skinner, coincé sous des journaux, qui fait rebondir un ballon de sa main libre pour éviter de virer fou.

Je me demande justement comment le type n'est pas devenu complètement malade. 23 ans à ne rien pouvoir faire! J'ai envie de tuer quand je subis un cours de trois heures... wow.

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Il semblerait que la méthode de communication utilisé dans cette histoire (facilitated communication) soit douteuse et considéré comme non crédible.

The statements of a Belgian man believed to be in a coma for 23 years, but recently discovered to be conscious, are poignant, but experts saythey may not be his words at all.

Rom Houben’s account of his ordeal, repeated in scores of news stories since appearing Saturday in Der Spiegel,appears to be delivered with assistance from an aide who helps guide his finger to letters on a flat computer keyboard. Called “facilitated communication,” that technique has been widely discredited, and is not considered scientifically valid.

“If facilitated communication is part of this, and it appears to be,then I don’t trust it,” said Arthur Caplan, director of the Universityof Pennsylvania’s Center for Bioethics. “I’m not saying the whole thing is a hoax, but somebody ought to be checking this in greater detail. Any time facilitated communication of any sort is involved, red flags fly.”

Facilitated communication came to prominence in the late 1970s after an Australian teacher reportedly used it to communicate with 12 children rendered speechless by cerebral palsy and other disorders. Over the next two decades, it gained some adherents in patient and medical communities, but failed to produce consistent results incontrolled, scientific settings.

Researchers said that facilitators were unconsciously or consciously guiding patients’ hands. Multiple professional organizations, including the American Association on Intellectual and DevelopmentalDisabilities and the American Academy of Pediatrics, say that facilitated communication is not credible.

Par contre, la conditions dont l'homme souffre, décrite dans l'article original, est une condition qui existe réellement, donc l'histoire n'est peut-être pas totalement fausse malgré ça.

Far more credible, however, is emerging research on patients though tto be in vegetative states, but revealed by brain-scanning technology to be at least minimally conscious, and even aware of what is happening around them. These two strains of research have collided in the figure of Houben. In 2006, a full 23 years after a horrific car accident left him paralyzed and apparently unconscious, tests run by the University of Liege’s Coma Science Group showed that Houben’s brain was active, and almost normal. He wasn’t a vegetable, but aware, and trapped silently in the prison of his ruined body.

Houben has since proven able to answer yes-or-no questions withslight movements of his foot. It’s a tremendous accomplishment, and raises the chilling possibility that, as estimated by Coma Science Group leader Steven Laureys in a Monday New York Times story, as many as four in 10 people considered utterly comatose may be misdiagnosed. But the legitimacy of interviews given by Houben and his facilitator to Der Spiegel, and shown on video by the BBC, may not be as certain.

“I believe that he is sentient. They’ve shown that with MRI scans,” said James Randi ,a prominent skeptic who during the 1990s investigated the use of facilitated communication for autistic children. But in the video, “You see this woman who’s not only holding his hand, but what she’s doing is directing his fingers and looking directly at the keyboard. She’s pressing down on the keyboard, pressing messages for him. He has nothing to do with it.”

According to Randi, facilitated communication could only be considered credible if the facilitator didn’t look at the keyboard or screen while supporting Houben’s hand, and helped him type messages in response to questions she had not heard, thus ensuring that Houben’s responses are entirely his own.

The James Randi Educational Foundation has offered a million-dollar prize to a valid demonstration of facilitated communication, and Randi invited Houben to participate. “Our prize is still there,” he said.

In the Der Spiegel interview, Houben and his facilitator recounted his ordeal. “I would scream, but no sound wouldcome out,” they wrote. “I became the witness to my own suffering, as doctors and nurses tried to speak to me and eventually gave up.” Of the correct diagnosis, they wrote, “I will never forget the day they finally discovered what was wrong — it was my second birth.”

According to Caplan, Houben’s apparent lucidity after spending more than two decades in complete isolation — circumstances known to be psychologically and cognitively damaging — is hard to believe.

“You’re going to lie for 23 years in a hospital bed with almost no stimuli, and then sound completely coherent and cogent?” he said.“Something is wrong with that picture. The messages are almost poetic. It sounds too lucid, like someone prepared these things to say. I’m not saying it’s all a fraud, but I want to hear a lot more.”

Whatever the final verdict on Houben’s facilitated communication, however, it does not alter the fact of his misdiagnosis. Laureys could not be reached for comment, but said in an Agence France Presse story that “every patient should be tested at least 10 times before they are categorically defined as ‘vegetative.’”

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Ça me rappelle cette chanson.

Je voulais citer Johnny got his gun mais je suppose que ta réponse est équivalente.

C'est un très bon film en passant.

Modifié par Kéwee
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Conclusion de l'histoire : Ce que "dit" le gars dans l'article est fake, mais il est bel et bien conscient.

Remember Rom Houben, the man thought to be in a vegetative state, who turned out to have been fully conscious and "locked in" for more than 20 years? It has now emerged that doubts that he was really communicating using residual movement in his finger and a touchscreen were spot on.

"Powerlessness. Utter powerlessness. At first I was angry, then I learned to live with it."

That's what Houben, brain damaged in a car accident in 1983, apparently told the world by communicating via a computer touch-screen, at least according to the original report of Houben's story in Der Spiegel in November 2009.

The story attracted huge media attention, which quickly turned sour when several videos of Houben typing at the screen prompted commentators to cry foul. They pointed out that the speed of the typing, and the fact that Houben is not even looking at the keyboard at various points in the footage, suggested it was in fact the person holding his finger who was behind the messages.

Now, according to a follow-up article in Der Spiegel, it seems these suspicions have been borne out. The magazine reports that Steven Laureys of the University of Liège in Belgium, who first diagnosed Houben as conscious, but dissociated himself from the communication fiasco, has carried out subsequent tests to see if Houben is capable of this kind of communication. He concludes that the speech therapist holding Houben's finger was in fact the source of the messages.

"The tests determined that he doesn't have enough strength and muscle control in his right arm to operate the keyboard. In her effort to help the patient express himself, it would seem that the speech therapist had unwittingly assumed control. This kind of self-deception happens all the time when this method -- known as 'facilitated communication'-- is used."

According to Der Spiegel, Houben failed to pass a 15-item test administered by Laureys. As Houben saw or heard reference to 15 items, he was asked to use his single, incompletely paralysed finger to press the corresponding word on the touch screen - without the help of the speech the rapist. But he failed on every item.To make sure the test was fair, Laureys gave the same test to another, impaired patient, who successfully completed the test.

Where does this leave Houben? According to Der Spiegel, because of images taken of his brain activity that reveal it is behaving only slightly differently from that of a healthy brain,"researchers are fairly certain that Houben is conscious".

How to communicate with him is another matter. Earlier this month, Laureys, together with researchers at the University of Cambridge revealed a brain imaging technique that allowed them to converse with a paralysed man previously thought to be in a vegetative state. But Der Spiegelreports that the procedure is "entirely unsuitable" for Houben: "One attempt ended without usable results because spasms make it nearly impossible for Houben to hold his head still."

Si on ignore les commentaires bidons de l'article original, qui ajoutent de la dramatisation à l'histoire, je pense qu'il reste quand même matière à discussion.

Modifié par Miagi
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Pour faire suite avec l'idée, j'ai lu brièvement l'intro d'un article dans le journal de l'U.Laval hier comme quoi une équipe de chercheurs je-ne-sais-où prétendent avoir trouver un moyen pour communiquer avec des gens dans un état végétatif : cette découverte engendrait des questions éthiques et gnagna.

Ça rejoins le sujet de ton thread : La communication avec des patients en état végétatif : Percée scientifique aux multiples enjeux éthiques

La communication avec des patients en état végétatif

Percée scientifique aux multiples enjeux éthiques

// Par : Marie-Pier Désilets

Un individu dans un état végétatif, contrairement à une personne comateuse, n’a aucune chance de se réveiller. Seul son système nerveux végétal est fonctionnel, rendant toute forme de communication conventionnelle avec l’extérieur impossible. Or, une toute nouvelle méthode qui utilise l’imagerie par résonance magnétique fonctionnelle ( IRMf ) semble montrer que plusieurs patients sont beaucoup plus conscients qu’on ne l’a cru jusqu’à présent.

Grâce à l’IRMf, le cerveau d’une personne ( sain ou végétatif ) peut être investi afin de regarder son activité en temps réel. La méthode utilisée consiste à demander au patient de s’imaginer en train de faire une action déterminée. Au cours de la recherche, les médecins demandaient au patient de s’imaginer jouant au tennis. Une fois la zone cérébrale activée par cette pensée bien identifiée sur les images que renvoie l’IRMf, les médecins posent une série de questions se répondant par « oui » ou par « non ». Ainsi, lorsque le patient souhaite répondre affirmativement à une question, on lui demande de s’imaginer jouant au tennis pour qu’ensuite les chercheurs puissent voir s’activer la zone associée à cette pensée. Si le patient souhaite plutôt répondre par la négative, on lui indique de s’imaginer en train de s’orienter dans les rues d’une grande ville. L’exercice d’imagerie mentale pour l’affirmative permet aux chercheurs de voir s’activer sur leurs écrans la zone cérébrale associée au mouvement, tandis que la pensée associée à la réponse négative active la zone cérébrale associée à l’orientation spatiale.

Au Royal Hospital for Neurostability de Londres, on prétend avoir réussi à communiquer avec plus de 25 patients dans un état végétatif à l’aide de cette méthode. Au total, 60 patients ont été testés. Les applications de cette découverte impliquent notamment la possibilité de demander aux patients végétatifs s’ils ressentent de la douleur et, le cas échéant, de leur administrer les médicaments nécessaires. Les plus optimistes y voient déjà la possibilité de consulter les patients afin de savoir s’ils souhaitent être maintenus en vie ou mourir de façon volontaire. Or, prévient le Dr. Amzica de la Faculté de Médecine dentaire de l’Université de Montréal et spécialiste du coma, « nous ne sommes pas parvenu au point de demander aux patients s’ils souhaitent mourir. La technique qui emploie la résonance magnétique, quoique très sérieuse, ne fait pas encore l’objet d’un consensus », souligne-t-il. Le Dr. Cyril Schneider du Laboratoire de neuroStimulation et Neuro-sciences Cliniques est également d’avis qu’il ne faut pas sauter trop vite aux conclusions. « Il est encore difficile de confirmer si les zones que l’on voit s’animer s’activent réellement ou si elles s’inhibent », met-il en garde. « On risque encore de mal interpréter les activités cérébrales que nous renvoie l’IRMf. »

Poser de meilleurs diagnostics

Le Dr. Amzica se réjouit par contre de cette nouvelle percée qui contribuera, selon lui, à poser de meilleurs diagnostics. « Les critères qui permettent de poser un diagnostic sont en continuelle redéfinition », et cette recherche permettra d’acquérir plus de précision, prévoit-il. La technologie ( l’IRMf ) nécessaire pour pratiquer ce genre de test n’est toutefois pas encore disponible à Québec. Le groupe CINQ, dont fait partie le Dr. Schneider, a récemment déposé une demande officielle et espère voir l’intérêt pour ce type de recherche médicale grimper avec la récente découverte qui, on s’en doute, suscitera de grands débats éthiques au sein de la population.

Modifié par Anthropo
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Je voulais citer Johnny got his gun mais je suppose que ta réponse est équivalente.

C'est un très bon film en passant.

Ouais la chanson est inspiré par ce film, mais tu dois déjà savoir ça.

Je n'ai pas vu le film par contre, je ne l'ai jamais vraiment cherché en magasin. J'oublie toujours.

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Les plus optimistes y voient déjà la possibilité de consulter les patients afin de savoir s’ils souhaitent être maintenus en vie ou mourir de façon volontaire.

Ça ressemble à un beau catch 22 ça!

- Est-ce que tu veux mourir?

- Oui

- Mais, en répondant oui, ça veut dire que t'es pas dans un état végétatif, et donc on ne va pas t'euthanasier

(Je sais que c'est probablement pas un vrai cas d'euthanasie, mais je trouve ça quand même amusant.)

Il y a aussi une étude un peu contraire à celle d'Anthropo sur le fMRI :


So, as the [dead salmon] sat in the scanner, they showed it “a series of photographs depicting human individuals in social situations.” To maintain the rigor of the protocol (and perhaps because it was hilarious), the salmon, just like a human test subject, “was asked to determine what emotion the individual in the photo must have been experiencing.”

The salmon, as Bennett’s poster on the test dryly notes, “was not alive at the time of scanning.”

If that were all that had occurred, the salmon scanning would simply live on in Dartmouth lore as a “crowning achievement in terms of ridiculous objects to scan.” But the fish had a surprise in store. When they got around to analyzing the voxel (think: 3-D or “volumetric” pixel) data, the voxels representing the area where the salmon’s tiny brain sat showed evidence of activity. In the fMRI scan, it looked like the dead salmon was actually thinking about the pictures it had been shown.

“By complete, random chance, we found some voxels that were significant that just happened to be in the fish’s brain,” Bennett said. “And if I were a ridiculous researcher, I’d say, ‘A dead salmon perceiving humans can tell their emotional state.’”

The result is completely nuts — but that’s actually exactly the point. Bennett, who is now a post-doc at the University of California, Santa Barbara, and his adviser, George Wolford, wrote up the work as a warning about the dangers of false positives in fMRI data. They wanted to call attention to ways the field could improve its statistical methods.


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