Misdiagnoised as being in vegetative state?

[kgeaux]

http://www.msnbc.msn.com/id/34109227/

This is a fascinating article. This poor guy was aware of everything going on for 23 years, yet was unable to talk or move to let anyone know.

From the article:

“Despite the importance of diagnostic accuracy, the rate of misdiagnosis of vegetative state has not substantially changed in the past 15 years,” the study said. Back then, studies found that “up to 43 percent of patients with disorders of consciousness are erroneously assigned a diagnosis of vegetative state.”

and this:

“It makes you think. There is still a lot of work to be done” to better diagnose such disorders, said Caroline Schnakers of the Coma Science Group.

My own son suffered a catastrophic respiratory failure two years ago, leading to a heart attack and stroke. He was in coma for about a week, with us being told there was "no brain activity" on day 2. That kid just got home from work!

 

[LinasK]

That's why I think it was a major mistake to let Terri Schiavo's husband pull her plug. I think she was misdiagnosed, and could have benefited from some therapy, which he refused to allow. He wanted his freedom to be with his new woman!:furious:

 

[SunnieRN]

When I was in nursing school I had a patient who was said to be "a vegetable", by all the nursing staff, (including our instructor who worked at the hospital). When I did my research on his meds, history and condition, I talked to him as I assessed him.

I told my instructor that he was trying to follow me with his eyes. I wont go into what she said to me, but the hospital social worker was listening to me. She told me to see if I could come up with any ideas to communicate with him.

I took care of him the next morning, talking to him, of course (I'm good at talking, if you haven't noticed yet.) ;-) I asked him if he could cclose his eyes. He couldn't. We went along his whole body, the only purposeful movement being his right index finger. I told the social worker. She worked with him that night with a letter board.

The first thing this man "spelled", using the letter board was, "Tell the nurses to stop coming in my room and telling me I'm dead."

This was 18 years ago. He had locked in syndrome. VERY scary disease state!

http://en.wikipedia.org/wiki/Locked-in_syndrome

 

[Gozgals]

That's why I think it was a major mistake to let Terri Schiavo's husband pull her plug. I think she was misdiagnosed, and could have benefited from some therapy, which he refused to allow. He wanted his freedom to be with his new woman!:furious:

I am in total agreement.


WHERE there is life, there is always hope!!

The medical community makes many mistakes that usally are not for the benefit of the pt. I feel we must take our healths matter in our own hands (as this mother did and keep on fighting). We must use them (the medical community) as a guideline unless of course a dx is clearcut.

This man lost too many years of his life, but Thank the Lord he will be able to get the help he needs now. I wish him more good health and the chance to move forward in his recovery.

Quote: Over the years, Houben’s family refused to accept the word of his doctors, firmly believing their son knew what was happening around him, and gave no thought to letting him die, said his mother, Fina. She was vindicated when the breakthrough came.

“At that moment, you think, ‘Oh, my God. See, now you know.’ I was always convinced,” she said in a telephone interview with The Associated Press. Quote:

Gozgals

 

[Steely Dan]

That's why I think it was a major mistake to let Terri Schiavo's husband pull her plug. I think she was misdiagnosed, and could have benefited from some therapy, which he refused to allow. He wanted his freedom to be with his new woman!:furious:

I respect your opinion but Terry Schiavo was well past any hopes of recovery.

http://www.nndb.com/people/435/000026357/

In a final postscript to Schiavo's short life, the autopsy conducted after her death established that her brain damage was even worse than experts had said while she was alive, and that virtually everything the "save Terri" activists had said was incorrect. Schiavo's brain weighed about half what a healthy human brain weighs, damage that left her unable to think, feel, see, or interact in any way with her environment.

I wouldn't want to be kept alive in a state like that. I've been in a coma and trust me there is nothing there except black. I've told some members of my family I want to be disconnected if that happens to me. I'd hate to think someone else would interfere with my wishes.

 

[Steely Dan]

James Randi has a problem with this story and doesn't believe it. http://www.randi.org/site/index.php/swift-blog/783-this-cruel-farce-has-to-stop.html

For those who may need further evidence for my contention, the proof can be found at http://tinyurl.com/ye9d9lp -- where it is clearly seen that the “facilitator” is looking directly at the keyboard, while the subject is asleep! There can be no further doubt. This FC claim is simply untrue, a farce, a lie – and the “facilitator” knows it! And no, this man is not going to write a book, but the "facilitator" is, and if this humbug is not stopped, she'll make a fortune doing so. Put a stop to this, someone!"

But who will see that the caretakers for this unfortunate man are corrected and made to answer for this situation?

[ame="http://www.msnbc.msn.com/id/31388323/vp/34111007#34111007"]Dr. Nancy[/ame]

 

[gaia227]

I read about this a few days ago. Absolutely amazing. I guess they did not run regular brain scans to check his brain activity?

I watched a documentary about a woman who had severe autism and it was always assumed that since she was unable to speak she didn't have anything to say until they put a keyboard in front of her. It turns out she is an incredibly intelligent, articulate woman who has a lot to say and she had spent most of her life being mis-understood, treated like a child, unable to communicate how she felt. I can't imagine what a hopeless and frustrating feeling that is.

 

[Steely Dan]

IMO, this caretaker is a sick person out for her fifteen minutes of fame and a possible book deal. She's really misleading the family with false hope.

This is about a study done with autistic children. The experiment used in that study should be applied here. JMO

http://trueslant.com/michaelshermer/2009/11/25/coma-man-hoax/

A facilitator stood next to a child, held his or her hand firmly in a grip with the index finger pointing down over a keyboard, then typed. In controlled tests by experimental psychologists, a photograph of an object was shown to the facilitator and a photograph of an object was shown to the child. Neither one saw what the other one saw. Sometimes the pictures were of the same objects, sometimes they were different. Result: whatever the facilitator saw is what got typed, 100% of the time, and never (0%) did what the child see get typed unless it was also what the facilitator saw. Did that end the travesty of exploitation of these autistic children? No. At least not for many years. Why? Because emotions almost always trump evidence. And, understandably, parents of autistic children want to believe that their children are normal. The tragedy is in the letdown and realization of what is really going on, which in time did happen. That is the power of belief.

 

[wfgodot]

The Daily Mail weighed in on this earlier today in its own, inimitable fashion:

Is coma man Rom Houben REALLY 'talking'? Mystery as critics slam his 'Ouija board' computer typing

But critics have slammed the technique, raising the question of whether Houben really is awake and communicating at all.

Arthur Caplan, a bioethics professor at the University of Pennsylvania, said he is sceptical after seeing video of Houben's hand being moved along the keyboard.

'That's called "facilitated communication,'' Caplan said. 'That is Ouija board stuff.

'It's been discredited time and time again.'

http://www.dailymail.co.uk/news/wor...-Mystery-critics-slam-Ouija-board-typing.html

 

[octobermoon]

My husband died from ALS (Lou Gehrig's Disease). He chose hospice over life support, vent, feeding tube. He didn't want to be locked in. He rapidly declined in the two years we knew of his condition. In the end we used a letter board, but never did we direct his movements. Took a lot of patience, and a lot of humor but we managed.

I was told when he went into the coma that he most likely could hear us, I was comforted by that. How true it is I will never know.

Now days I laugh at the spelling police on web sites. What a stupid thing to ***** about. They have no clue.

 

[txsvicki]

How the heck does The Amazing Randi explain away the new high tech scans that show the man's brain is functioning normally? I'd have liked to hear more about the man in the video instead of that woman and dr. yapping so much about the right to die.

 

[octobermoon]

How the heck does The Amazing Randi explain away the new high tech scans that show the man's brain is functioning normally? I'd have liked to hear more about the man in the video instead of that woman and dr. yapping so much about the right to die.

Hi Txsvicki,
This is such a personal issue for families and those with paralysis. It is hell on earth. I am pro life, but understood my husband deciding to forgo life support. His reasoning was simple and heartbreaking at the same time. He did not want to live on machines never being able to tell me to "pull the plug", Nor did he want me to have to make that call and feel guilty for the rest of my life never knowing that he wanted to live. I hope that makes sense. I pray every day for answers, for technology to catch up to the needs of those in pain and their loved ones.

 

[Steely Dan]

How the heck does The Amazing Randi explain away the new high tech scans that show the man's brain is functioning normally? I'd have liked to hear more about the man in the video instead of that woman and dr. yapping so much about the right to die.

If they give this guy and his handler the test with the pictures and he comes out at least 85% right, I'll believe it. Until that happens I'm remaining skeptical.

 

[Steely Dan]

Link

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.

That facilitator should be prosecuted for giving that poor family false hope.

 

[jjenny]

Link

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.

That facilitator should be prosecuted for giving that poor family false hope.

I never believed that story to begin with. And it should be really easy to prove this method isn't valid. Have the men answer a question which was asked when facilitator isn't present.
Obviously he wouldn't be able to, because facilitator wouldn't know what was asked. Which was exactly what they finally did. How difficult would it have been to do before claiming the man could communicate?

 

[jjenny]

I read about this a few days ago. Absolutely amazing. I guess they did not run regular brain scans to check his brain activity?

I watched a documentary about a woman who had severe autism and it was always assumed that since she was unable to speak she didn't have anything to say until they put a keyboard in front of her. It turns out she is an incredibly intelligent, articulate woman who has a lot to say and she had spent most of her life being mis-understood, treated like a child, unable to communicate how she felt. I can't imagine what a hopeless and frustrating feeling that is.

Was somebody else typing on that keyboard, holding her hand?

 

[Searchfortruth]

This is why I believe everyone should have a living will. I have seen patients that were truly in a vegetative state lay there on feeding tubes, ventilators, with no movement, speech, response to pain, etc...I have also seen families that argue that their loved one does understand what is being said (although there was never any sign of that) and that they are not in a vegetative state. We had one man that was in a veg. state for years, he never opened his eyes, spoke, or moved any part of his body. Yet as soon as the nurses left the room, his wife would run out to the nurses station and proclaim that he had just opened his eyes, and muttered a sound to her. We would rush in there and there was nothing. I can not tell you how many times that same scenario happened with this one spouse.

I understand wanting to keep your loved one alive, but at what point is it selfishness to do so ?

 

[Katherinekate]

terry schiavo wasnt in some car accident or bumped her head...she did it to her own body by abusing the hell out of it,,,slow decline and she pulled her own plug, IMO

 

[TXangel]

This is why I believe everyone should have a living will. I have seen patients that were truly in a vegetative state lay there on feeding tubes, ventilators, with no movement, speech, response to pain, etc...I have also seen families that argue that their loved one does understand what is being said (although there was never any sign of that) and that they are not in a vegetative state. We had one man that was in a veg. state for years, he never opened his eyes, spoke, or moved any part of his body. Yet as soon as the nurses left the room, his wife would run out to the nurses station and proclaim that he had just opened his eyes, and muttered a sound to her. We would rush in there and there was nothing. I can not tell you how many times that same scenario happened with this one spouse.

I understand wanting to keep your loved one alive, but at what point is it selfishness to do so ?

I agree most heartily. My father has been in a persistent vegetative state for the past 17 years. At least we were told so. He actually does have his eyes open and will follow people across the room with them. For awhile, he was doing various therapies and therapists thought they might have him talking (if somewhat garbled) again someday, but he began having seizures and was found to have pressure on his brain from some blood. (I was kind of young when this was happening so I don't remember it well). When they relieved it, he went back to just laying with his eyes open, watching everything.

I hate to think he's laying there, trapped inside himself- able to think, but not speak or move more than an inch or so at a time. When he first had his accident, he was on a respirator and other life support, but only for a short time and at the time no one really knew (or would tell us) how much he may or may not recover. By the time doctors were able to tell us he would always be this way, he was only on a feeding tube. And it's cruel and unusual (and illegal) to starve someone to death. It may sound harsh, but it's also cruel and unusual to force someone to stay alive in a way they would have hated, at least to me.

But with a living will, none of this would have been an issue. His wishes- to die while he was living rather than live while he was dead- would have been carried out.