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People In A Coma / Vegetative State

maureenmac1

Gone But Not Forgotten
(ACCOUNT RETIRED)
Joined
Sep 4, 2006
Messages
124
Saturday, 2nd June 2007
Latest News

Sat 2 Jun 2007

Pole wakes from 19-year coma in democratic country
WARSAW (Reuters) - A 65-year-old railwayman who fell into a coma following in an accident in communist Poland regained consciousness 19 years later to find democracy and a market economy, Polish media reported on Saturday.

Wheelchair-bound Jan Grzebski, whom doctors had given only two or three years to live following his 1988 accident, credited his caring wife Gertruda with his revival.

"It was Gertruda that saved me, and I'll never forget it" Grzebski told news channel TVN24.

"For 19 years Mrs Grzebska did the job of an experienced intensive care team, changing her comatose husband's position every hour to prevent bed-sore infections," Super Express reported Dr Boguslaw Poniatowski as saying.

"When I went into a coma there was only tea and vinegar in the shops, meat was rationed and huge petrol queues were everywhere," Grzebski told TVN24, describing his recollections of the communist system's economic collapse.

"Now I see people on the streets with cell phones and there are so many goods in the shops it makes my head spin."

Grzebski awoke to find his four children had all married and produced 11 grandchildren during his years in hospital.

He said he vaguely recalled the family gatherings he was taken to while in a coma and his wife and children trying to communicate with him.


This article: http://news.scotsman.com/latest.cfm?id=866312007

Last updated: 02-Jun-07 14:03 BST
 
:D Aww, it's so nice to see a happy story like this in the news. His family must be thrilled!

I think it's very interesting that he has vague memories of stuff that happened while he was in the coma. It apparently varies; a friend of mine was beaten into a coma (a bar fight that rather got out of hand) and when he awoke he had no memory of anything that had happened while he was "out".

I have heard that doctors will refrain from making negative comments about a coma patient's chances in the presence of the patient (forgive my crappy sentence structure here). Anyone know if this is true?
 
PinkTaffy said:
... I have heard that doctors will refrain from making negative comments about a coma patient's chances in the presence of the patient (forgive my crappy sentence structure here). Anyone know if this is true?

I don't have 'hard evidence', but ... Yes, I've heard from acquaintances in the medical field that they now refrain from speaking about anything potentially worrisome in the presence of a (non-brain-dead) coma victim. I believe this was an extension of the similar restrictions imposed with respect to patients under anaesthesia some years back, as evidence mounted that at least some anaesthetized patients could 'apprehend' and remember sounds occurring while they were 'out' ...
 
PinkTaffy said:
:D Aww, it's so nice to see a happy story like this in the news. His family must be thrilled!

I think it's very interesting that he has vague memories of stuff that happened while he was in the coma. It apparently varies; a friend of mine was beaten into a coma (a bar fight that rather got out of hand) and when he awoke he had no memory of anything that had happened while he was "out".

I have heard that doctors will refrain from making negative comments about a coma patient's chances in the presence of the patient (forgive my crappy sentence structure here). Anyone know if this is true?

About your question, Taffy: I have no medical expertise, training or anything close to it :D but I think this is sometimes true.

I recall a case--I believe it was here in the States, several years ago--where a woman was sueing a hospital for "emotional distress".

It seems she had been considerably overweight (to put it gently--not that--ahem!--some of us have any room to talk 8) ). Anyway, her doctors had decided that she needed some kind of surgery (nothing to do with her weight problem). So she was put under full anesthesia and the surgery progressed--fortunately the surgery was a complete success and after some time recovering the lady returned home and was soon well again.

Problem was--something was bothering her, but she couldn't quite put her finger on it. On follow-up visits with her surgeon she found herself being unaccountably irritable and angry towards him--and the rest of the hospital operating team. (This was a woman who before her surgery had been a well-adjusted, stable person apparently.)

Somehow later on (I apologize for my spotty memory!!) she began to put 2 and 2 together and slowly began to realize just why she felt so much anger.

Turned out that during the surgery--when she was fully anesthetized and presumably "out of it"--some of the operating team had made fun of her ample size--joking about her plump tummy rolls, for example. Of course, while it was unkind, they were convinced that the patient was totally unaware of what they were saying.

But somehow, despite the anesthesia, on some level, the patient had been aware of the ridicule--and like anyone else, she was both hurt and angered (and probably embarrassed) by these jokes at her expense.

I can't recall the precise outcome of the case--maybe they "settled out of court"--but it turned out that her vague memories were validated when a shamefaced surgeon and his team admitted that they had, in fact, made fun of the lady's weight during her surgery.

The doctor and staff did apologize to her, and said that henceforth they would be extremely careful about what they said in front of patients--even supposedly unconscious or even comatose patients.

So yes, I'm sure that hospital (and nursing home) staff are now much more careful what they say in front of even apparently comatose patients.

And yes--what a great story!! Truly amazing how some patients, that most people would have given up on long ago, can suddenly recover from deep comas. I have heard of a few other cases similar to this but it never ceases to amaze me!

I think this gentleman can thank his devoted wife--what a woman she is!! Now that is what I call "true love"!! And yeah, I am a real sap for happy endings!!

If my math is correct, he must be about 84 now? Amazing how clear his mind is!!

And never mind the cell phones etc--imagine waking up to find you suddenly have eleven grandchildren!!! :shock: :p

And I find it fascinating that he does have some vague memories of family events during all those years of being comatose.

I wonder if we will ever really understand the human mind??? :D
 
Conscious man 'in coma' for 23 years
A Belgian man diagnosed as being in a coma for 23 years was actually conscious the whole time.
By Allan Hall in Berlin
Published: 6:30AM GMT 23 Nov 2009

Rom Houbens was simply paralysed and had no way to let doctors caring for him what he was suffering.

"I dreamt myself away," says Houben, now 46, who was misdiagnosed as being in a persistent vegetative state after a car crash.

Doctors and nurses in Zolder deemed him a hopeless case whereby his consciousness was considered "extinct".

The former martial arts enthusiast and engineering student was paralysed after a car crash in 1983. He was finally correctly diagnosed three years ago and his case has just come to light in a scientific paper released by the man who "saved" him.

Doctors treating him regularly examined him using the worldwide Glasgow Coma Scale which judges a patient according to eye, verbal and motor responses.

During every examination he was graded incorrectly. And so he suffered in silence, unable to communicate to his parents, his carers or the friends who came to his bedside that he was awake and aware at all times what was happening in his room.

Only the re-evaluation of his case at the University of Liege brought to light that Houben was only paralysed all these years. Hi-tech scans showed his brain was still functioning almost completely normally.

Therapy has now enabled him to tap out messages on a computer screen and he has a special device above his bed enabling him to read books while lying down.

When he woke up after the accident he had lost control of his body, "I screamed, but there was nothing to hear," he says.

"I became a witness to my own suffering as doctors and nurses tried to speak with me until they gave up all hope.

"I shall never forget the day when they discovered what was truly wrong with me – it was my second birth. All that time I just literally dreamed of a better life. Frustration is too small a word to describe what I felt."

The neurologist Steven Laureys who led the re-examination of Houben, published a study two months ago claiming vegetative state diagnosed patients are often misdiagnosed.

"Anyone who bears the stamp of 'unconscious' just one time hardly ever gets rid of it again," he said.

Laureys, who leads the Coma Science Group and Department of Neurology at Liege University Hospital, discovered how Houbens' brain was still working using state-of-the-art imaging. He now intends to use the case of Houbens to highlight what he considers may be many more similar examples of misdiagnosis around the world.

He 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 3000 to 5000 people a year, remain trapped in an intermediate stage: they go on living without ever come back again."

Houbens remains in constant care at a facility near Brussels.

http://www.telegraph.co.uk/news/worldne ... years.html
 
Long article:

'Locked in a coma, I could hear people talking around me'
The Telegraph's Geoffrey Lean was in a coma for a month following an operation that went wrong, but all the time he could hear people talking around him.
By Geoffrey Lean
Published: 7:00AM GMT 24 Nov 2009

Imagine this. You are lying in a hospital bed, in a coma, apparently dead to what is happening around you. But you experience it all the same, hear what is being said about and to you, and try in vain to communicate with your loved ones and the world outside.

That is what happened to Ron Houben, a Belgian student who spent 23 years in a so-called persistent vegetative state, after being paralysed by a 1983 car crash. Only after two decades did doctors recognise the truth that, though they had concluded that his consciousness was “extinct”, his brain was still functioning almost entirely normally.

Unimaginable, isn’t it. Well, actually not to me, for I have been through something very similar. Locked in a coma after an operation went wrong, I heard medical staff discussing my case, without being able to join in. I listened to my wife talking to me, but was unable to respond. And I tried, fruitlessly, to work out how to make contact with her.

It was, let me quickly say, much less bad for me than it has been for Mr. Houben, a former martial arts enthusiast, whose case has just been described in a scientific paper by Belgium’s University of Liege. My coma lasted only a month, and I was never diagnosed as being in a persistently vegetative state.

I fully recovered: he is not expected ever to leave hospital. Though voiceless and quadriplegic for some time – my greatest ambition was to be able to turn over in bed – I slowly learned to walk again, while he remains paralysed and unable to speak except through a computer. But his story still brings a flash of recognition, a stab of fellow-feeling.

“All that time I just dreamed of a better life,” he now says. “Frustration is too small a word to describe what I felt. I screamed, but there was nothing to hear.

“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 fiends via the computer and enjoy my life now that people know I am not dead.”

Memories came rushing back from nearly two decades ago, as I read his story. I entered my own coma, after what should have been a simple operation – for a twisted bowel – went disastrously wrong. I suffered multi-organ failure, and developed rhabdomyolisis, a condition that melts muscles. Indeed, I was told that I had broken the record as the world’s fastest dissolving man.

My chances of survival were rated at the outset as less than one per cent, and started falling from there. My wife, Judy, was told at one stage that I was definitely going to die and my doctors said afterwards that they had lost count of the number of times they had dragged me back from “halfway through the pearly gates”.

I was packed in ice by intensive care staff to try to keep my soaring temperature down. And I was fed oxygen through a hole in my neck to keep me breathing, blowing me up so much that Judy says I looked like “an oriental frog”.

While this was going on, I was spending much of my time in either entirely white or completely black worlds. The white one was strange and humpy, as if comprised of rumpled sheets; the other was simply pitch black. In neither case could I see my body, but it was clearly there because I could feel what was being done to it.

Every so often an unseen nurse would tell me that she was going to take my blood pressure or give me an injection, and I could feel the tourniquet tightening or feel the needle pricking my arm. It was a bewildering, alien sensation; had the nurses not given their warning into my apparently deaf ears, I am sure it would have been frightening.

etc...

http://www.telegraph.co.uk/health/66381 ... nd-me.html
 
Mystery as coma survivor Rom Houben finds voice at his fingertips
David Charter in Brussels

Linda Wouters did not believe in miracles until she held Rom Houben’s twisted hand. Doctors had long insisted that the car crash victim had slipped into a deep coma but his therapist knew otherwise.

At the care centre, 50 miles (80km) east of Brussels, where Mr Houben, 46, lives, Mrs Wouters spoke yesterday of his long journey back to the living and the controversial technique that enables him to communicate.

After spending 23 years “locked in” — conscious but paralysed and unable to communicate — Mr Houben is now seemingly able to express himself in remarkably lucid messages while Mrs Wouters guides his hand over a computer screen.

Some experts wonder, however, whether it is really him who is tapping out the words.

“He says, ‘I am blessed’,” Mrs Wouters told The Times. “It is difficult to imagine it. I know he feels it and I know what he means when he says it but it is still difficult to imagine it.”

Mr Houben’s “rebirth” took many painstaking months. “We asked him to try and blink but he couldn’t; we asked him to move his cheek but he couldn’t; we asked him to move his hand and he couldn’t,” Mrs Wouters said.

“Eventually, someone noticed that when we talked to him he moved his toe so we started to try and communicate using his toe to press a button.”

It was a breakthrough but much more was to come when a fellow speech therapist discovered that it was possible to discern minuscule movements in his right forefinger.

Mrs Wouters, 42, was assigned to Mr Houben and they began to learn the communication technique that he is now using to write a book about his life and thoughts. “I thought it was a miracle — it actually worked,” she said.

The method involves taking Mr Houben by the elbow and the right hand while he is seated at a specially adapted computer and feeling for minute twitches in his forefinger as his hand is guided over the letters of the alphabet. Mrs Wouters said that she could feel him recoil slightly if the letter was wrong. After three years of practice the words now come tumbling out, she said.

The novel method of communication has not convinced all medical experts, however. “It’s Ouija board stuff. It’s been discredited time and again when people look at it. It’s usually the person who is doing the pointing who is doing the messages,” Arthur Caplan, Professor of Bioethics at the University of Pennsylvania, said after watching a video of the pair.

The spectacle is so incredible that even Steven Laureys, the neurologist who discovered Mr Houben’s potential, had doubts about its authenticity. He decided to put it to the test.

“I showed him objects when I was alone with him in the room and then, later, with his aide, he was able to give the right answers,” Professor Laureys said. “It is true.”


Mrs Wouters said that Mr Houben could indicate on his screen whether he wanted to write a text message or listen to the radio. (He is not keen on television.) “When he moves, you can hardly see it but I can feel it,” she said.

“The tension increases and I feel he wants to go so I move his hand along the screen and if it is a mistake he pulls back. As a facilitator, you have to be very careful that you do not take over. You have to follow him.”

Mr Houben’s first written work was published in the care centre magazine. In it he described his incredible reawakening. “Someone had thrown away the key forever,” he wrote. “In the eyes of the world I was a sporty young man who had suddenly become a vegetable. I was lying there but was I really there? Well, I was there day in, day out. I heard, I saw, I felt, but only deep inside, hidden from everyone, but not from myself.

“Now I can communicate and talk via facilitated communication. Not everyone believes in this form of communication. It is a controversial method but, for me, it is vital to life. At last, my views can be heard and my feelings expressed.”

Mrs Wouters said that she felt guilty when she went on holiday because she knew that Mr Houben would not be able to communicate in the same way without her.

“What I want to be most is a tool, but I feel like a friend,” she said. “I want to do for him what a friend would do. It is difficult sometimes because I have to leave Rom here. I don’t take him home with me.”

The sudden media attention has been exhausting but exciting. Mr Houben said: “Normally everything goes along like a snail but now I feel like I am sitting in a Porsche — not comfortable but very happy.”

Mrs Wouters said: “He says, ‘I have a rich life at this moment’. He wants to tell his story but he needs time to tell it. People react and say he is very courageous but he says, ‘I am just living my life and telling how it feels to me. What is courageous about that?’.”

http://www.timesonline.co.uk/tol/life_a ... 930608.ece
 
I can't say whether or not this Belgian guy was or is in a coma or locked in or what, but I do know that facilitated communication is bunk. He didn't 'say' any of those things. Based on her quotes, I'm inclined to believe that Mrs Wouters isn't just deluded - she's a charlatan.
 
What specifically about her quotes makes you think so? If magicians can do muscle reading, why can't facilitated communication work? If it did work, but this isn't it, how different from this do you think it would it look?
 
maureenmac1 said:
Saturday, 2nd June 2007
Latest News

Sat 2 Jun 2007

Pole wakes from 19-year coma in democratic country

Whats the betting he promptly asks to be put back to sleep when he discovers Peter Mandelson is still a politician?
 
Doctors find a way to communicate with a man who'd apparently been in a 'persistent vegetative state' for seven years.
http://www.guardian.co.uk/science/2010/feb/03/vegetative-state-patient-communication

Think tennis for yes, home for no: how doctors helped man in vegetative state

• Brain-injured patient's thoughts 'read' by scanner
• Technique provides hope for others in similar state

guardian.co.uk, Sarah Boseley, health editor, 3 February 2010

For seven years the man lay in a hospital bed, showing no signs of consciousness since sustaining a traumatic brain injury in a car accident. His doctors were ­convinced he was in a vegetative state. Until now.

To the astonishment of his ­medical team, the patient has been able to ­communicate with the outside world after scientists worked out, in effect, a way to read his thoughts.

They devised a technique to enable the man, now 29, to answer yes and no to ­simple questions through the use of a hi-tech scanner, monitoring his brain ­activity.

To answer yes, he was told to think of playing tennis, a motor activity. To answer no, he was told to think of wandering from room to room in his home, visualising everything he would expect to see there, creating activity in the part of the brain governing spatial awareness.

His doctors were amazed when the patient gave the correct answers to a series of questions about his family. The ­experiment will fuel the controversy of when a patient should have life support removed.

It also raises the prospect of some form of communication with those who have been shut off from life, perhaps for years.

"We were astonished when we saw the results of the patient's scan and that he was able to correctly answer the questions that were asked by simply changing his thoughts," said Dr Adrian Owen, ­assistant director of the Medical Research Council's cognition and brain sciences unit at ­Cambridge University.

"Not only did these scans tell us that the patient was not in a vegetative state but, more importantly, for the first time in five years it provided the patient with a way of communicating his thoughts to the outside world."

Dr Steven Laureys, from the University of Liège in Belgium and co-author of the paper on the patient, said: "It's early days, but in the future we hope to develop this technique to allow some patients to express their feelings and thoughts, control their environment and increase their quality of life."

The patient has not been identified, but his family was said to have been happy with the outcome. "That's not unusual," said Owen. "The worst thing in this sort of situation is not knowing."

He said that as many as one in five patients in a vegetative state may have a fully functioning mind.

The British and Belgian teams studied 23 patients classified as in a vegetative state and found that four were able to generate thoughts of tennis or their homes and create mind patterns that could be read by an fMRI (functional magnetic resonance imaging) scanner – although only one was asked specific questions.

Owen said that misdiagnosis of vegetative state was fairly common: in about 40% of cases people are later found to be able to communicate in some way.

He said he believed that the patients who responded in the study were probably "perfectly consciously aware", although he knew others would disagree.

"To be able to do what we have asked, you have got to be able to understand instructions, you have to have a ­functioning memory to remember what tennis is and you have to have your attention intact. I can't think of what cognitive functions they haven't got and still be able to do this," he said.

When it was suggested that to be ­conscious but trapped in an inert body might be a worse fate than to know nothing, Owen said: "On the plus side we are making enormous advances. Things have changed so much in the last few years."

...

Patients in a vegetative state are defined as having "wakefulness without awareness". They are people who have survived an acute brain injury who are not in a coma – they may go through sleep cycles, for instance – but they do not respond to any stimuli.

Some stay this way permanently, but others start to show some awareness, although without being able to communicate. They may be able to move a finger when asked to do so, but not always, and they are not able to signal yes or no by their movements. These patients are now referred to as being in a minimally conscious state (MCS). It can be hard to know whether their movements are intentional or merely reflexive.

Recovery from a traumatic brain injury – such as a blow to the head in a car accident – is more frequent than that caused by disease, such as a stroke. But after a year in a vegetative state, most health professionals do not recommend further treatment, because official advice is that the chances of recovery are virtually zero. With the consent of the family, doctors may go to court for an order allowing them to sedate the patient and withdraw nutritional support, allowing them to die. This study may cause a rethink.

Sarah Boseley
Once these brainscanners become more sophisticated and portable. Who knows what they might discover. :shock:
 
There is the question of how we know exactly that it's working. If the patient's only way to tell us is by using the scanner, that kind of makes it hard to verify.
 
Anome_ said:
There is the question of how we know exactly that it's working. If the patient's only way to tell us is by using the scanner, that kind of makes it hard to verify.

You could test it by asking questions which we know the answer to, eg "is grass green?"

If the patient "says" no, then either the scanner techqniue is not valid or they have more brain damage than you thought - but if the patient consistently gives correct, valid answers to known questions then the answer to the unknown ones (""are you in pain?") are probably valid too.
 
About three years too late here, but the original story echoes the plot of the 2003 film 'Goodbye Lenin' (patient goes into coma in eastern-bloc country, wakes up in democracy). Not much of a chance of him seeing it when he was 'out', so a nice case of life imitating art?
 
Belgian coma 'writer' Rom Houben can't communicate

A Belgian man who stunned the world last year by apparently communicating after 23 years in a coma cannot in fact do so, researchers say.

The doctor who believed that Rom Houben was communicating through a facilitator now says the method does not work.

Dr Steven Laureys told the BBC: "The story of Rom is about the diagnosis of consciousness, not communication."

His conclusions follow a study to test the validity of so-called facilitated communication.

Claims that Mr Houben - who was seriously injured in a car crash in 1983 - could communicate, swept around the world last November.

After more than two decades in a coma, he was filmed apparently tapping out messages on a special touchpad keyboard with the help of his speech therapist.

Method 'not valid'

By holding Mr Houben's forearm and finger, the therapist was said to feel sufficient pressure to direct her to the correct keys on the keyboard.

Dr Laureys, a neurologist at Liege University Hospital in Belgium, had earlier established that Mr Houben, was more conscious than doctors had previously thought - and that is still thought to be the case.

But he also believed that his interaction with the speech therapist was genuine. Following further study, however, Dr Laureys says the method does not work.

He told the BBC that a series of tests on a group of coma patients, including Mr Houben, had concluded that the method was after all false. The results of the study were presented in London on Friday.

Objects and words were shown to the patients in the absence of the facilitator who was then called back into the room. The patient was then asked to say what they had seen or heard.

"It's easy to watch the video and say this method is not valid, but to prove that it is not true is actually very difficult," Dr Laureys said.

Houben was 'writing a book'

Doubts were expressed about the method by other experts at the time and repeated this week.

"It's like using an Ouija board," Arthur Caplan, a professor of bioethics at the University of Pennsylvania, told Associated Press on Friday. "It was too good to be true and we shouldn't have believed it."

Last November Mr Houben's mother, Fina Houben, told the BBC that she always believed her son could communicate.

"He is not depressed, he is an optimist," she said. "He wants to get out of life what he can."

Last year, Mrs Houben claimed her son was writing a book. "Just imagine," Mr Houben ostensibly typed out via his speech therapist. "You hear, see, feel and think but no one can see that."

Experts say the question of whether people like Houben who have a traumatic brain injury are conscious and alert remains unanswered.

"I hope Rom and his family will stay as an example" of how hard it is to pick up the signs of consciousness, Dr Laureys told the Associated Press.

"Even when we know that patients are conscious, we don't know if there is pain or suffering or what they are feeling."
http://news.bbc.co.uk/2/hi/europe/8526017.stm
 
Last edited by a moderator:
James_H2 said:
About three years too late here, but the original story echoes the plot of the 2003 film 'Goodbye Lenin' (patient goes into coma in eastern-bloc country, wakes up in democracy). Not much of a chance of him seeing it when he was 'out', so a nice case of life imitating art?

Cheers JamesH2, I've been trawling through my grey matter trying to remember the film :idea:
 
Gloat?? Why would you be against people being able to communicate with their loved ones? or do you feel less guilty getting rid of useless people that way?
 
tonyblair11 said:
Gloat?? Why would you be against people being able to communicate with their loved ones? or do you feel less guilty getting rid of useless people that way?
That's an outrageous leap you've made there. What people have I advocated getting rid of? At what point did I come across as being against people communicating with their loved ones?
I called FC bunk on the first page. That's what I was interested in crowing about. I hope that your not actually on the side of the charlatan facilitators who are manipulating vulnerable people on their way to a book deal.
 
jmasel said:
tonyblair11 said:
Gloat?? Why would you be against people being able to communicate with their loved ones? or do you feel less guilty getting rid of useless people that way?
That's an outrageous leap you've made there. What people have I advocated getting rid of? At what point did I come across as being against people communicating with their loved ones?
I called FC bunk on the first page. That's what I was interested in crowing about. I hope that your not actually on the side of the charlatan facilitators who are manipulating vulnerable people on their way to a book deal.

Yeah I thought the gloating was over it not working not any charlatan activities associated. I wasn't aware of any. Sorry to take your post the wrong way.
 
Guys! Its really easy to take things the wrong way when they're written on a message board.

Exchange phone numbers and have a chat.

Chill! :D
 
Conscious man 'in coma' for 23 years
A Belgian man diagnosed as being in a coma for 23 years was actually conscious the whole time.
By Allan Hall in Berlin
6:30AM GMT 23 Nov 2009

Rom Houbens was simply paralysed and had no way to let doctors caring for him what he was suffering.
"I dreamt myself away," says Houben, now 46, who was misdiagnosed as being in a persistent vegetative state after a car crash.
Doctors and nurses in Zolder deemed him a hopeless case whereby his consciousness was considered "extinct".

The former martial arts enthusiast and engineering student was paralysed after a car crash in 1983. He was finally correctly diagnosed three years ago and his case has just come to light in a scientific paper released by the man who "saved" him.

Doctors treating him regularly examined him using the worldwide Glasgow Coma Scale which judges a patient according to eye, verbal and motor responses.
During every examination he was graded incorrectly. And so he suffered in silence, unable to communicate to his parents, his carers or the friends who came to his bedside that he was awake and aware at all times what was happening in his room.

Only the re-evaluation of his case at the University of Liege brought to light that Houben was only paralysed all these years. Hi-tech scans showed his brain was still functioning almost completely normally.
Therapy has now enabled him to tap out messages on a computer screen and he has a special device above his bed enabling him to read books while lying down.

When he woke up after the accident he had lost control of his body, "I screamed, but there was nothing to hear," he says.
"I became a witness to my own suffering as doctors and nurses tried to speak with me until they gave up all hope.
"I shall never forget the day when they discovered what was truly wrong with me – it was my second birth. All that time I just literally dreamed of a better life. Frustration is too small a word to describe what I felt."

The neurologist Steven Laureys who led the re-examination of Houben, published a study two months ago claiming vegetative state diagnosed patients are often misdiagnosed.
"Anyone who bears the stamp of 'unconscious' just one time hardly ever gets rid of it again," he said.

Laureys, who leads the Coma Science Group and Department of Neurology at Liege University Hospital, discovered how Houbens' brain was still working using state-of-the-art imaging. He now intends to use the case of Houbens to highlight what he considers may be many more similar examples of misdiagnosis around the world.

He 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 3000 to 5000 people a year, remain trapped in an intermediate stage: they go on living without ever come back again."

Houbens remains in constant care at a facility near Brussels.

http://www.telegraph.co.uk/news/worldne ... years.html
 
A friend of mine in another state (you'll excuse me from going into details) had a stroke early in August. She wasn't found for hours. Her husband has dropped everything else in his life and is spending every day either at her bedside, talking to medical personnel, or fighting with insurance. She can answer questions by opening and closing her eyes, has clear wake/sleep cycles, expresses distress, makes small motor movements (to cuddle a bear, for example), and is making progress on breathing, but is completely averbal at the moment, and has only slight motor control.

Every time somebody new, from food service to doctor, comes onto the case he has to demonstrate to them that no, it's not family wishful thinking, all these things are real, and when he tells them to speak softly, keep the light out of her eyes, etc., he's not being fussy, but addressing her real needs. Every bloody person. All of them who take the time to look (and time is the problem, of course) can see it; it's demonstrable, it's consistent. She's in there.

And from the beginning he's been fighting a trend on the parts of insurance companies and those who fill out paperwork for them to assume the worst. Her original neurosurgeon was cautiously hopeful, but the other doctor involved in the case had the attitude that "they hardly ever get better from this state and she's no different."

His being there every day, having her published works lined up on the windowsill (and loaning them out to anyone interested), having familiar things from home around her, and so on are a big help; presumably to her, to keep her anchored, but also to the staff, as these things keep her from vanishing into the vast piles of bodies they deal with every day. Coma and paralyzed patients can't be squeaky wheels. They need somebody on hand constantly to squeak for them.
 
Former PNE player Gary Parkinson is only in his 40's and he suffered a massive stroke. Although he is fully aware he is competely paralysed. I cannot imagine such a trauma for the individual.

As an aside I've put a link on to this summers cricket match between PNE, Bolton, Blackpool and a Gary Parkinson team. All to raise money for his care.

http://www.pnefc.net/page/NewsDetail/0, ... 66,00.html
 
'Conversations' possible with vegetative state patients
Two-way "conversations" with people in a permanent vegetative state will be possible thanks to the discovery that an inexpensive device can read their brain activity, say neuroscientists.
By Stephen Adams, Medical Correspondent
6:30AM GMT 10 Nov 2011

They have discovered that some people in the state are able to understand what is being said to them and follow commands to think certain thoughts.
British researchers have been at the forefront of the project, which experts hope will "fundamentally change" the way such patients are cared for.

In the experiment, 16 patients at Addenbrooke's Hospital in Cambridge and the University Hospital of Liege in Belgium were asked to imagine movements of their right hand and toes.
Their brainwaves were assessed using an electroencephalography (EEG) machine, which measures neuron activity using a skullcap wired with electrodes. In addition, 12 healthy volunteers were asked to perform the same task.
The scientists consequently deduced that three of the 16 could "repeatedly and reliably" imagine the movements, "despite being behaviourally entirely unresponsive".

The principle focus of the study, published online in The Lancet, was to see if EEG was as good as MRI scanning at detecting such brain activity in these patients, because it is much cheaper and more portable.
The researchers found it was - but they were able to go much further than that.

Professor Adrian Owen of the Medical Research Council Cognition and Brain Sciences Unit in Cambridge worked on the project with seven others from Britain, Belgium and Canada.
They concluded: "Our findings show that this EEG method can identify covert awareness in patients diagnosed in the vegetative state with a similar degree of accuracy to other methods of detection; it is a considerably cheaper and more portable bedside technique.
"This method could reach all vegetative patients and fundamentally change their bedside assessment."

They added that it could open up "routine two-way communication" with some patients.
"The degrees of freedom provided by EEG could take this technique beyond binary (two) responses to allow methods of communication that are far more functionally expressive, based on many forms of mental state classification," they argued.
"The development of techniques for the real-time classification of these forms of mental imagery will enable routine two-way communication with some of these patients, allowing them to share information about their inner worlds, experiences and needs."

Professor Susan Gathercole, director of the Medical Research Council Cognition and Brain Sciences Unit, said the discovery brought them "one step closer" to "pinpointing levels of awareness that were not previously possible".

But Paul Matthews, professor of neurosciences at Imperial College, London, cautioned that there was still a way to go before two-way communication was possible.
"Can they be taught to use EEG to communicate more generally, rather as eye blinks can be used by patients with 'locked in syndrome'?" he asked.

People who are in a vegetative state are distinct from those with 'locked-in syndrome', who are fully conscious but cannot move. Those with locked-in syndrome can often communicate by blinking. In February, French researchers found almost three-quarters of 91 people with locked-in syndrome reported they were happy.

Julian Savulescu, director of the Oxford Centre for Neuroethics, said the study "raises more ethical questions than it answers".
"Are these patients suffering?" he asked. "How bad is their life? Do they want to continue in that state? If they could express a desire, should it be respected?"
He said: "For some of these patients, consciousness could be the experience of a living hell."
And he advised: "We need guidelines for when life-prolonging treatment should be withdrawn in these minimally conscious states."

http://www.telegraph.co.uk/health/healt ... ients.html
 
Vegetative patient Scott Routley says 'I'm not in pain'
By Fergus Walsh, Medical correspondent

A Canadian man who was believed to have been in a vegetative state for more than a decade, has been able to tell scientists that he is not in any pain.
It's the first time an uncommunicative, severely brain-injured patient has been able to give answers clinically relevant to their care.

Scott Routley, 39, was asked questions while having his brain activity scanned in an fMRI machine.
His doctor says the discovery means medical textbooks will need rewriting.

Vegetative patients emerge from a coma into a condition where they have periods awake, with their eyes open, but have no perception of themselves or the outside world.

Mr Routley suffered a severe brain injury in a car accident 12 years ago.
None of his physical assessments since then have shown any sign of awareness, or ability to communicate.

But the British neuroscientist Prof Adrian Owen - who led the team at the Brain and Mind Institute, University of Western Ontario - said Mr Routley was clearly not vegetative.
"Scott has been able to show he has a conscious, thinking mind. We have scanned him several times and his pattern of brain activity shows he is clearly choosing to answer our questions. We believe he knows who and where he is."

Prof Owen said it was a groundbreaking moment.
"Asking a patient something important to them has been our aim for many years. In future we could ask what we could do to improve their quality of life. It could be simple things like the entertainment we provide or the times of day they are washed and fed."

Scott Routley's parents say they always thought he was conscious and could communicate by lifting a thumb or moving his eyes. But this has never been accepted by medical staff.

Prof Bryan Young at University Hospital, London - Mr Routley's neurologist for a decade - said the scan results overturned all the behavioural assessments that had been made over the years.
"I was impressed and amazed that he was able to show these cognitive responses. He had the clinical picture of a typical vegetative patient and showed no spontaneous movements that looked meaningful."

Observational assessments of Mr Routley since he responded in the scanner have continued to suggest he is vegetative. Prof Young said medical textbooks would need to be updated to include Prof Owen's techniques.

The BBC's Panorama programme followed several vegetative and minimally-conscious patients in Britain and Canada for more than a year.
Another Canadian patient, Steven Graham, was able to demonstrate that he had laid down new memories since his brain injury. Mr Graham answers yes when asked whether his sister has a daughter. His niece was born after his car accident five years ago.

The Panorama team also followed three patients at the Royal Hospital for Neuro-disability (RHN) in Putney, which specialises in the rehabilitation of brain-injured patients.
It collaborates with a team of Cambridge University neuroscientists at the Wolfson Brain Imaging Centre at Addenbrooke's hospital, Cambridge.
One of the patients is diagnosed as vegetative by the RHN, and he is also unable to show awareness in an fMRI machine.
A second patient, who had not been fully assessed by the RHN, is shown to have some limited awareness in brain scans.

----------------------------------------------------------

FMRI SCANNING

Functional Magnetic Resonance Imaging measures the real-time activity of the brain by tracking the flow of oxygen-rich blood
The patients were repeatedly asked to imagine playing tennis or walking around their home
In healthy volunteers each produces a distinct pattern of activity, in the premotor cortex for the first task and the parahippocampal gyrus for the second
It allowed the researchers to put a series of yes or no questions to severely brain-injured patients. A minority were able to answer by using the power of thought
In 2010 Prof Owen published research showing that nearly one in five of the vegetative patients were able to communicate using brain activity

http://www.bbc.co.uk/news/health-20268044
 
I've looked after lots of 'vegetative' patients and found that their families usually claimed that the patient was trying to communicate and could understand what was going on. The staff would smile indulgently. My feeling was that this was still a person rather than a job. So I treated them as I would any patient, eg by telling them I was about to do this or that.

I'd listen to the rellies too, who after all knew them better than anyone else and spent many hours with them each day.

I was washing a particular patient a few years ago who was believed to be more or less blind and unresponsive. He couldn't speak but would try to grab your hand as you worked. This was believed to be a reflex.

Chattering away as usual, I remembered that I had a lovely light-up pen in my pocket. It was a PlayStation merchandising thing. If you pressed the clicker at the top, the whole thing lit up brightly.

I took out the pen and put it in his hand, just to give him something to hold.

To my amazement, he held it up to his face and clicked it on, stared at it and clicked it off again. He did this a few times, then turned to me and grinned.

I told him, 'I'm getting the boss!' and brought the sister. She too saw him clicking the pen and looking at it. This was proof that he was responsive.

Not as spectacular as the MRI scan, but if he was about to go onto the Liverpool Pathway that pen may have saved his life.
;)
 
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