One Of Your Worst Nightmares - Man Misdiagnosed Comatose For 23 Years

How many of us have ever wondered "what if" or had nightmares about being in a comatose state but fully awake inside and aware of everything and everyone around you? You try to communicate in any possible way but you can not. You can't move, you can't open your eyes, and you can't speak out loud either. The only thing you are left with is screaming inside your own head and making some sort of peace with having to endure the torture of being trapped in your own body with no control over who touches you, what treatment you get, etc. Every second of every day the screams in your head continue in hopes that one will finally break through to the surface.

I have thought about that on several occasions. It would be pure psychological hell to go through that I think. I cannot imagine going through it for 23 years straight.

The article below describes how this happened to a man in Belgian where he was diagnosed comatose and stayed that way 23 years. The only thing that saved him was a new scan that was done on his brain in which some doctors noticed his brain was functioning almost completely normal.

In what can only be described as a harrowing instance of misdiagnosis, a Belgian man presumed comatose for 23 years after a near-fatal car crash was actually conscious and paralyzed the entire time. Rom Houben, whose real state was discovered three years ago but only now made public, could be one of many falsely diagnosed coma cases, raising serious questions about those diagnosed as "vegetative" and, even more frighteningly, the process by which vegetative people are removed from life support.

That was the first thing that crossed my mind when I saw the headline to this article. How many people have "pulled the plug" on folks who are actually still alive, but left in a completely paralyzed state?? I know lots of us would hang on to the hope that a loved one would bounce back at some point, and I know that a lot of us do question "what if" when it comes down to that decision. That's why so many people keep their loved ones on life support for many years before they can make the decision. I am not sure though how many would hold out hope or even be able to afford it for 23 years.

Houben, now in a facility in Brussels and communicating via a computer controlled by his minimally functioning right hand, came around after his 1983 car accident. But while he could hear every word his doctors spoke, he could not speak to them, nor could he move his body to communicate with them in any way. For years researchers and doctors tried to coax a response from Houben, who all along was trapped within his own body, living a life of frustration with his inability to interact.

"I screamed, but there was nothing to hear," he told the Guardian via his computer.

For over two decades Houben remained in what doctors thought was an unconscious state, though he was fully conscious of the world going by around him. It wasn't until three years ago when doctors wanted to try a new state-of-the-art PET scanning system on Houben that they made a startling discovery: the "comatose" man's brain was functioning almost normally.

For Houben, the discovery of his consciousness by the outside world has been like a "second birth," to put it in his own words. But for science, while the news of Houben's "discovery" is heartening, it will likely rehash the debate over when, if ever, a patient who by all indications of modern science is vegetative should be terminated.

As well it should IMO. It's certainly a decision that should be made with lots of thought. I have no doubt that this will impact how others handle their own tragic situations and it should. If this scan could tell the difference then it should be mandatory before any decision is made or even asked to think about being made.

Belgian neurologist Steven Laureys has published a paper on Houben's ordeal suggesting that his case is not isolated. According to his study, as many as 40 percent of cases diagnosed as vegetative may indeed possess enough consciousness to not only communicate, but to actually make considerable progress with the right treatment. Of 44 "vegetative" patients Laureys analyzed, 18 ended up responding to communication.

The idea of losing the ability to communicate with the outside world is terrifying enough, but to then be misdiagnosed and forgotten -- or deemed a lost cause and slotted for termination -- all while possessing fully functioning mental capacities is downright unthinkable. The question "how many times have we been wrong?" is one the medical community is likely loath to ask, but if Houben's case is any indication, it's one that needs to be addressed. If Laureys analysis is to be believed, there should be many more Houben's out there screaming in silence.

So already they have found others who have been misdiagnosed and they think a lot of the cases can be helped with the right diagnosis. Obviously that is the truth because this man went from being "comatose" to being able to communicate with those around him after 23 years of nothing at all. I understand the medical community is loath to ask how many times they got it wrong... but they need to ask anyway so they can help more people in the future.

This is certainly a breakthrough. I can not fathom what kind of hell this man lived in for 23 years. Screaming out to anyone he could, only to realize that he was the only one who could hear his cries... time after time... day after day... year after year. Imagine being in a room full of people talking about ending your life , that there is no hope, and you can't do a damn thing to make them realize that you are there and don't want to die. Terrifying.

I am just glad that his torture has ended and hope that this will help many others to be at least a little more sure if they do indeed need to make that incredibly hard decision.

You can read more here:
www.popsci.com...

a reply to: Kangaruex4Ewe

Wow that's pretty horrendous and I can't begin to imagine what it was like for this man. Sounds like a horror story from Edgar Allen Poe.

I'm happy he was finally able to interact with people again, what a strong mind he must have. Honestly I think if that was me I'd have gone stark raving mad just a few years into the ordeal. Probably by 5 years I'd be hoping someone pulled my plug.

Surprising no other brainwave testing machines detected his mental activity though. Someone dropped the ball big time on this it seems like.

originally posted by: Bassago
a reply to: Kangaruex4Ewe

Wow that's pretty horrendous and I can't begin to imagine what it was like for this man. Sounds like a horror story from Edgar Allen Poe.

I'm happy he was finally able to interact with people again, what a strong mind he must have. Honestly I think if that was me I'd have gone stark raving mad just a few years into the ordeal. Probably by 5 years I'd be hoping someone pulled my plug.

Surprising no other brainwave testing machines detected his mental activity though. Someone dropped the ball big time on this it seems like.

Me and you both. I would have snapped long before the 5 year mark I believe. I would think most would hope to snap and lose their minds in that situation. At least it would be like being somewhere else or even someone else. Any change at all would be a plus unless it was a painful one.

originally posted by: Kangaruex4Ewe
How many of us have ever wondered "what if" or had nightmares about being in a comatose state but fully awake inside and aware of everything and everyone around you? You try to communicate in any possible way but you can not. You can't move, you can't open your eyes, and you can't speak out loud either. The only thing you are left with is screaming inside your own head and making some sort of peace with having to endure the torture of being trapped in your own body with no control over who touches you, what treatment you get, etc. Every second of every day the screams in your head continue in hopes that one will finally break through to the surface.

Umm actually this kind of happened to me once and your description is very accurate. Luckily it was only for a matter of hours instead of years. Based on the few hours of my experience, I'm pretty sure I'd of died of torment had this gone on for more than a few weeks. This guy will need some major psychological therapy.

I had a tricky surgery involving the removal of tumors around some key areas (kidney, liver.) They were concerned about me moving around post-op and thought that might cause some bleeding. So what they did was give me something to paralyze the body, along with a sedative so I'd sleep through the forced paralysis. (Of course, they decided to do this during the surgery so I wasn't aware of the plan.)

Well, guess what went wrong? The sedative dose they gave me was too low and I was awake and aware right out of surgery in the post-op, but was totally paralyzed head to toe. I couldn't move, I couldn't open my eyes, I couldn't feel my body at all. I tried desperately to call for help, to make any sound or make any slight movement. I struggled and struggled. I could overhear everyone in the room talking. Something like nurses or doctor explaining that something went wrong with the surgery...

So I'm lying here for what seems like forever, not able to move, not able to make a sound, nor see anything wondering just what the heck is going on. It was torturous!

Every so often a nurse would come and open my eyelids and put some drops in them. I had a plan that if I could move my eyes, they'd see I was still "alive." Yes, I thought maybe I was dead because the surgery went wrong, and that explained why I was trapped like this. They'd open my eyes, fill with drops, but I failed to make any eye contact at all, eyes closed again. They did this a couple of times.

Finally, one of the nurses said, "Oh my god! He's awake!" They saw tears rolling down my face and finally someone came and knocked me out proper with some sedative.

I must say, this was one of the most nightmarish experiences of my life. It was hours, but felt like an eternity in hell. Years? I can't imagine anybody ever functioning in a sane way after something that traumatizing.

The part that irks me the most is I talked to the surgeon involved and explained to them I was awake while paralyzed like that, and how horrid it was. So what did they do? They logged in the report that "the patient had no complaints or discomfort."

a reply to: Kangaruex4Ewe

I actually used this story as an example in this thread www.abovetopsecret.com... during another disscusion some months ago, and yes it must have been terrifying to just lay there day after day, amazing that he could stay sane for such a long time.

The good thing is they found out and are using that experience to better check people when they appear braindead/ in coma.

Another source CLICK ME

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 may have almost fully-functioning brains.

a reply to: NarcolepticBuddha

AAAAgh! OMGosh!

I thought hubby & I had some bad experiences
with doctors & hospitals!
But you win hands down!!!

I had Guillain-Barre & was paralyzed from the bottom of my neck down.
But I could still talk, swallow & move my head a little!
It was about a week until I could use my arms.
Three weeks until I could walk well enough to go home.

It drove me crazy the first week having to have someone feed me,
scratch my nose when it itched, or change the channel on the TV!
I can't imagine having nothing to do all day but listen to your own breathing!
Or not having anyone interact with you.
Much less for 23 years!


If there is a plus side at all to your experience,
it's that at least you didn't wake up during the surgery!
I've read some pretty awful accounts of people
waking up paralyzed & feeling the actual surgery!

Which is one of the reasons why I will probably die,
from NOT having had a surgery that I really needed!
WOQ

I had a friend that suffered terrible injuries in a motorcycle accident. He was eventually put in a nursing home and written off as a vegetable. I believe his situation was similar to the poor soul described in the OP.
I tried to visit him at least once a week. When I told him I was there he would crack an almost imperceptible smile.
I would hold his hand and he could respond to questions with a light tap of a finger. Once for yes, twice for no.
It was a very sad case. I hate to say it, but I was happy for him when he eventually passed. He spent 20 years in that state.

a reply to: NarcolepticBuddha

You have just described one of my greatest fears ever and a huge reason my chicken ass tried to avoid any surgery at all and from my research the phenomena you endured is far more common than any medical professional will ever admit to. Scary as hell to be completely aware yet unable to control your physiological responses at all. Thanks, I'm not going to get much sleep tonight. I actually cancelled a hip replacement scheduled for the end of June partially due to my
Massive anxiety over the possibility of this.

originally posted by: wasobservingquietly
a reply to: NarcolepticBuddha

AAAAgh! OMGosh!

I thought hubby & I had some bad experiences
with doctors & hospitals!
But you win hands down!!!

Wait'll you get to know me That's just one day in the life of NB. I'm sure everybody has a "crazy hospital" or "doctor from hell" story.

I had Guillain-Barre & was paralyzed from the bottom of my neck down...It drove me crazy

I'm really trying to wrap my mind around the 23 years thing. Just a few hours of being paralyzed, trapped in your own mind is very, very uncomfortable (think of solitary confinement used as punishment, having no stimulus or intereaction.) I really would like to have a few conversations with this guy. I bet he has a lot to say, and a lot to let out!

at least you didn't wake up during the surgery!

No I never woke up during a surgery with general anesthesia. Sometimes they use..what? muscles relaxers and tranquilizers for something a bit less invasive? Forgive me, I don't know the exact potions they use. I have woken up during an upper GI scope (where they have that camera/ rod down your throat.) Very scary to say the least!

Anybody who has dealt with long-term disease or debilitating illness has some fascinating and chilling stories to tell!

a reply to: peter vlar

My intention was not to scare anybody or badmouth the medical establishment. My intention was to share a somewhat similar experience so that others in the thread could get an idea of what it might have been like for the person in the OP--because, let's face it--it's inconceivable to think about. Look at where my mind went after only a couple of hours! Straight to despair.

If it makes you feel any better, I have had well over a baker's dozen of surgeries in my lifetime (mostly with my battle with cancer,) and this was the only time I really had any complication at all. It was also a very unique circumstance.

I have had surgery on my hip as well and it came out okay

Personally, I have a greater fear of untreated injury and infirm than I do of surgeries and treatments.

a reply to: NarcolepticBuddha

Well, either way I certainly appreciated your personal anecdote giving insight to an all too often under discussed yet very real medical phenomena, albeit an extraordinarily rare event. I myself have had multiple surgeries and never experienced anything of the sort occurring on my end. However, the thought of it occurring is, to me, scary as all hell lol Again, I truly appreciate you sharing the experience and I do know instilling an irrational fear in other posters wasn't the intent, more to give a perspective and I'm glad that despite the number of procedures you've endured and the reason for them that you're still around and posting. Let's hope things stay moving in the direction of a healthy and ongoing existence for you.

a reply to: Kangaruex4Ewe

Oh my God... I am at a complete loss for words really. I am glad that he can communicate in some form now at least. Your absolutely correct in saying that is a nightmare you cannot wake up from, at least now he has sort of.

Grim

a reply to: Kangaruex4Ewe



This song pretty much describes what he went through ...Scary!!


Part of the lyrics:

Now the world is gone, I'm just one
Oh God, help me
Hold my breath as I wish for death
Oh please, God, help me

Darkness imprisoning me
All that I see Absolute horror
I cannot live
I cannot die
Trapped in myself
Body my holding cell

Landmine has taken my sight
Taken my speech
Taken my hearing
Taken my arms Taken
my legs
Taken my soul
Left me with life in hell

a reply to: NoFearsEqualsFreeMan

Aye very much so, that song always creeped me out.

Grim

a reply to: Kangaruex4Ewe

Sounds very similar to the condition known as LOCKED-IN SYNDROME. It is the thing of nightmares. Many victims were believed to be comatose but instead were conscious and trapped in their own bodies.