32 replies to this topic

[dielivnsin]

on may 15, 2009 I went to sleep a healthy 20 year old, the next morning when I woke up I couldnt move a muscle. I tried for an hour and finally my cousin got up, called my parents and they took me to the county hospital. After arrival my lungs collapsed and I was put on a ventilator. The next morning I was sent to the University of Kentucky hospital for treatment. I soon learned that my spinal cord was damaged between c-3 and c-5. With no feeling or movement from the chest down, little movement or feeling in my arms and none in my hands or wrists. Its been 8 months and still no definate answer as to what exactly happened. Though ive had some improvements, off the vent, movement of my wrists and partial feeling in my hands. From the research Ive done, I determined I have use to c-6 even though my injury was a little above it. Any thoughts at all?

[E-DOG]

You mean so far NO ONE has a clue as to what happened to you?

Yer in good company anyway. Welcome to the site.

E-dog

[dielivnsin]

 E-DOG, on Jan 17 2010, 10:25 PM, said:

You mean so far NO ONE has a clue as to what happened to you?

Yer in good company anyway. Welcome to the site.

E-dog

Well if I wrecked a motorcycle or broke my neck skydiving I'd understand. Every doctor I see has a different opinion. So naturally Ive taken a little from each and come up with my own. But its a long story and im typing with a pencil, so it might take a while.

[Skrads]

This happened to a girl I was in rehab with. She fell asleep one night and woke up paralyzed from the waste down. They worked out that she had a virus or something that is found in chickens that can effect an extremely small amount of humans, something like 1 in 200 million people, and only effects women. It is transfered to humans by eating chicken meat. The virus slowly attacks the spinal cord over many years. This means that the paralysis can get worse. At the time this girl was in rehab there were another 2 at the other rehab centre in Sydney.

I don't know much about it, only from what I've been quickly told. Hopefully this can help you out a bit so that you may do your own research.

Let us know what you find out.

[AndrewB]

It could have been a really old injury maybe? You probably would have had some symptoms though, numbness/tingling.. that's really odd,

I'm sure you've thought back about any injury's you may have had.

[dielivnsin]

First it was vasculitis, then gilian birae, then AVM, the guessing game went on for months. One doctor asked if I had any trauma to my neck lately, I told him a couple guys beat the hell out of me and left me in the ditch bout a month before. I got a couple staples in my head but nothing in my neck bothered me, he still thinks that caused the problem. The theory now is I had a spinal stroke while I was sleeping, it seems to make sense but they still say there not certain of anything. After I got home I started researching every possibility, im almost convinced that I done this to myself. The week before it happened I went to Tampa with a friend and stayed with his family. We went for 2 reasons, to party and to get pills. He had a script for 240 oxycodone 30mg, we got em filled and started eating em like candy. On the way home I got pulled over, he obtained his legally and had nothing to worry about. I had 10 in a bag and swallowed em soon as I seen blue lights, he searched us and let us go. That night when I got home I went to sleep and woke up paralyzed. I seen an article where guy overdosed, had a spinal stroke leaving him paralyzed. Is this possible? Did I do this to myself?

[allis53ca]

its possible you did, possible you didn't....doesn't make a shit now, won't change anything....there are very few of us here who's injury isn't a result of our own actions, irresponsible or otherwise..point is, ure crippled like the rest of us and won't be judged for how you got here...welcome, glad you found us

[gordonr]

 allis53ca, on Jan 17 2010, 11:41 PM, said:

its possible you did, possible you didn't....doesn't make a shit now, won't change anything....there are very few of us here who's injury isn't a result of our own actions, irresponsible or otherwise..point is, ure crippled like the rest of us and won't be judged for how you got here...welcome, glad you found us

Well said Allis.

I always start to yawn when people describe the "big" accident they had. Who cares? Fall off the Eiffel Tower or fall in the bath tub. Its all the same thing.

And no. We do not judge. If the crime is only stupidity, then sci as a punishment is way over the top. Compared with paralysis, listenning to some idiot say, I told you so... or, You had it coming... is frankly nothing but a minor irritant in the larger scheme of things.


Best

-G

[Ratticis]

Sounds familier, still wish I knew why it took over a month for them to do an MRI when i told them what had happened, but doctors are infaliable, ya know

[rue2you]

Mine was March 12, 2009 but I didn't go to sleep healthy. I had been "sick" for a year with weird buzzings in my body, horrible pain in my lower back and legs, they would go numb and get very heavy after walking around for about 20 minutes or so, muscle twitches, crazy fatigue and other things. They were talking MS but could never find the meducal proof for an actual diagnosis.
When I went to bed on March 11, it was because I was buzzing all over and was in a lot of pain. I also had pink eye in both eyes. I was 5 months pregnant and laid on my back all day and all night sound asleep and never moved.
I woke up on the 12th unable to feel or move anything.
At this point, I have heard it all too. In October I spent 6 days in the Cleveland Clinic and they have ruled out all diseases. They still are not sure either but they are leaning towards a virus that had been attacking my body all year and had settled in my spine. Maybe the pink eye was the last straw. They aren't sure. I am T-10.
I am interested in hearing more about this chicken virus stuff!

[qbounce]

 dielivnsin, on Jan 17 2010, 03:43 PM, said:

The week before it happened I went to Tampa with a friend and stayed with his family. We went for 2 reasons, to party and to get pills. He had a script for 240 oxycodone 30mg, we got em filled and started eating em like candy. On the way home I got pulled over, he obtained his legally and had nothing to worry about. I had 10 in a bag and swallowed em soon as I seen blue lights, he searched us and let us go. That night when I got home I went to sleep and woke up paralyzed. I seen an article where guy overdosed, had a spinal stroke leaving him paralyzed. Is this possible? Did I do this to myself?

Your asking us?? Have you told the docs about the pills?

If not, your guess is as good as mine.

Edited by qbounce, 18 January 2010 - 02:21 AM.

[fredspike]

I am T-6 from having mono the virus got into my spinal cord and caused the white blood cells to form a mass around it which then cut off the flow through the nerve. It took forever for them to figure out what was wrong.

[adam_downunder]

 bradgrove, on Jan 18 2010, 08:02 AM, said:

This happened to a girl I was in rehab with. She fell asleep one night and woke up paralyzed from the waste down. They worked out that she had a virus or something that is found in chickens that can effect an extremely small amount of humans, something like 1 in 200 million people, and only effects women. It is transfered to humans by eating chicken meat. The virus slowly attacks the spinal cord over many years. This means that the paralysis can get worse. At the time this girl was in rehab there were another 2 at the other rehab centre in Sydney.

I don't know much about it, only from what I've been quickly told. Hopefully this can help you out a bit so that you may do your own research.

Let us know what you find out.

Do you know what this condition is called?

[ClaraTaylor]

Welcome to the site.

I know this will sound awful - but hell if fate insists you have a spinal cord injury much rather fall asleep than slide across the tarmac and ruin your attractive features (or fall out of the bath tub that just makes you look like an arse). MY OPINION NOT INTENDED TO OFFEND.

Keep up the research, but don't let it get in the way of learning everything you can rehab etc so that you can keep your muscle strength and increase your mobility in any way possible.

Good luck.

[maisy1996]

good luck with finding out what caused it. welcome to the site.

maisy (:

[dielivnsin]

Thanks for the support everyone, its good to just to talk to people who have a better understanding of what im dealing with. As far as what got me in the shape im in youre all right, it makes no difference at all. I've got to make peace with that

[graphic]

 dielivnsin, on Jan 18 2010, 07:21 PM, said:

Thanks for the support everyone, its good to just to talk to people who have a better understanding of what im dealing with. As far as what got me in the shape im in youre all right, it makes no difference at all. I've got to make peace with that

As has already been said, don't beat yourself up about the cause of your injury, concentrate on getting the most out of life from now on. Like you, I woke up one morning (26 years ago) and couldn't move. The doctor came and when I sat up in bed for him to examine me I promptly p****d myself. He immediately knew something was wrong, lol. After weeks of steroid injections nothing improved and I was told I had Transverse Myelitis, caused by a virus. As was said by someone in a previous post, it's better than falling from the Eiffel Tower. The only drawback is that it doesn't sound as impressive when someone asks the inevitable question: "So, what happened to you?" There are plenty of people here who can answer just about any question you might have about living with SCI, so take advantage of us.
Welcome to the site, Clive

[The Black Sheep]

The same thing happened to me when I was 13, and I was finally diagnosed with Transverse Myelitis, but no one is sure what caused it. I'm not sure I fully understand the diagnosis, but it happened during a nap. I'm not sure if you've discussed it with a doctor, but maybe suggest or question if it is Transverse Myelitis. From what I understand, it's something that results from swelling in the spinal cord. For me, I fell off a trampoline (very lightly) about 5 days prior to when I was paralyzed. I had mono at the time, which might not have had any influence, but the infection might have gotten into my spinal cord after the bruising on my spine happened. It took a few days to strangle the nerves, but it happened very quickly when it did. I woke up and had a difficult time breathing, and when I tried getting up, I fell on the tile floor. I could feel the floor, but not the temperature... very weird.

There's a couple other TM people here *waves* Yello! Welcome to the site, Clive.

Edited by The Black Sheep, 20 January 2010 - 03:25 PM.

[DannyR]

A few days after Christmas 2009 I woke up with a stiff neck that went on for about a week so I went to the doctor. h e told me instead of doing X-Rays he would just tell me I had Wry Neck. Truth was I had 2 ruptured discs that were putting pressure on my spinal cord and things progressed very quickly. By the end of january I wasn't able to walk and had to use both hands to hold a glass of water. Long story short I had injuries between C-5 and C-7. I can walk with a cane and have use of my hands but things are very difficult at times. I am now on disability but feel lucky in that things could have been a lot worse. Reading about your experiences has helped in that I thought I was the only one going what the hell happened to me. Things happened so fast and can't think of anything that was worse than the surgeon telling me I don't know if you will walk again or not.One thing I have come to see is that it doesn't really matter what happened but it happened. My life like everyone elses is so different now. My question is and I'm coming up on a year now is how do you cope with all this. I am 50 years old love the outdoors. I do still get out took a bad fall during deer season but i refuse to give up on the things that make me who I am. Depression is a problem. Does stress make the pain worse and the challenges bigger?

[Tetracyclone]

Are you kidding? Of course stress makes things worse. More pain, more spasms. Fear, or believing that things are haaard makes everything more difficult, like slogging through mud.

[dielivnsin]

does anyone know anything to help a winged scapula? my shoulder blade is always out, pressing against my chair, and its causing me more pain than ever. the doctors just shrug their shoulders when I ask

[lisaoutriding]

 DannyR, on Jan 22 2010, 12:50 AM, said:

A few days after Christmas 2009 I woke up with a stiff neck that went on for about a week so I went to the doctor. h e told me instead of doing X-Rays he would just tell me I had Wry Neck. Truth was I had 2 ruptured discs that were putting pressure on my spinal cord and things progressed very quickly. By the end of january I wasn't able to walk and had to use both hands to hold a glass of water. Long story short I had injuries between C-5 and C-7. I can walk with a cane and have use of my hands but things are very difficult at times. I am now on disability but feel lucky in that things could have been a lot worse. Reading about your experiences has helped in that I thought I was the only one going what the hell happened to me. Things happened so fast and can't think of anything that was worse than the surgeon telling me I don't know if you will walk again or not.One thing I have come to see is that it doesn't really matter what happened but it happened. My life like everyone elses is so different now. My question is and I'm coming up on a year now is how do you cope with all this. I am 50 years old love the outdoors. I do still get out took a bad fall during deer season but i refuse to give up on the things that make me who I am. Depression is a problem. Does stress make the pain worse and the challenges bigger?

You are in my prayers, I do not know if you like to read, but there is a book that really helps me through these situations of helplessness. It is not a self help thing, but a way of not thinking with my ego. It is The Power of Now and then A New Earth, by Eckhart Tolle. I don't like to readd and they are both available on CD. I attend a group that discusses the principles beehind this book and it really makes me aware of what this life is about. I just wish I could have read these powerful books prior to adolescence. I hope you maintain yourself and don't go into depression. It is not necessary. Good luck and much love. Lisa

[Ratticis]

 ClaraTaylor, on Jan 18 2010, 12:47 AM, said:

Welcome to the site.

I know this will sound awful - but hell if fate insists you have a spinal cord injury much rather fall asleep than slide across the tarmac and ruin your attractive features (or fall out of the bath tub that just makes you look like an arse). MY OPINION NOT INTENDED TO OFFEND.

Keep up the research, but don't let it get in the way of learning everything you can rehab etc so that you can keep your muscle strength and increase your mobility in any way possible.

Good luck.

Ya, I know, I'm a dumbass

[ClaraTaylor]

 Ratticis, on Jan 26 2010, 06:10 AM, said:

 ClaraTaylor, on Jan 18 2010, 12:47 AM, said:

Welcome to the site.

I know this will sound awful - but hell if fate insists you have a spinal cord injury much rather fall asleep than slide across the tarmac and ruin your attractive features (or fall out of the bath tub that just makes you look like an arse). MY OPINION NOT INTENDED TO OFFEND.

Keep up the research, but don't let it get in the way of learning everything you can rehab etc so that you can keep your muscle strength and increase your mobility in any way possible.

Good luck.

Ya, I know, I'm a dumbass

You needed this pointing out? (Still love you anyway).

[DannyR]

 lisaoutriding, on Jan 25 2010, 09:29 PM, said:

 DannyR, on Jan 22 2010, 12:50 AM, said:

A few days after Christmas 2009 I woke up with a stiff neck that went on for about a week so I went to the doctor. h e told me instead of doing X-Rays he would just tell me I had Wry Neck. Truth was I had 2 ruptured discs that were putting pressure on my spinal cord and things progressed very quickly. By the end of january I wasn't able to walk and had to use both hands to hold a glass of water. Long story short I had injuries between C-5 and C-7. I can walk with a cane and have use of my hands but things are very difficult at times. I am now on disability but feel lucky in that things could have been a lot worse. Reading about your experiences has helped in that I thought I was the only one going what the hell happened to me. Things happened so fast and can't think of anything that was worse than the surgeon telling me I don't know if you will walk again or not.One thing I have come to see is that it doesn't really matter what happened but it happened. My life like everyone elses is so different now. My question is and I'm coming up on a year now is how do you cope with all this. I am 50 years old love the outdoors. I do still get out took a bad fall during deer season but i refuse to give up on the things that make me who I am. Depression is a problem. Does stress make the pain worse and the challenges bigger?

You are in my prayers, I do not know if you like to read, but there is a book that really helps me through these situations of helplessness. It is not a self help thing, but a way of not thinking with my ego. It is The Power of Now and then A New Earth, by Eckhart Tolle. I don't like to readd and they are both available on CD. I attend a group that discusses the principles beehind this book and it really makes me aware of what this life is about. I just wish I could have read these powerful books prior to adolescence. I hope you maintain yourself and don't go into depression. It is not necessary. Good luck and much love. Lisa

Thanks I will start looking for this book.

[hooplady]

 dielivnsin, on Jan 25 2010, 03:06 PM, said:

does anyone know anything to help a winged scapula? my shoulder blade is always out, pressing against my chair, and its causing me more pain than ever. the doctors just shrug their shoulders when I ask

Docs are so stoopid sometimes. You probably need some very specific therapy exercises designed by an OT.

The scapula "wings" out because of a muscle imbalance and the muscles involved are rather small and hard to isolate. I know because I had surgery some years ago on my shoulder, and I wasn't diligent enough to prevent this so my right scapula sticks out. One exercise they gave me was to stand with back and shoulder blades against a wall. Raise arms up so that forarms are at right angles to shoulders (as if stopped by police?). Try to keep the shoulder blades, elbows, and back of wrist touching the wall and slowly slide hands up over your head. Harder than it sounds to accomplish, harder still to explain in words, and I'm not sure how you could adapt this since you're in a chair.

Another exercise was to grab a towel behind you - one hand on your back at waist level, one hand reaching behind you over your shoulder. Get your hands as close as you can together, then slowly bend over which increases the stretch. Again, you may need some type of adaptation or assistance to manage this.

Depending on which muscles are paralyzed, you may need to work more on stretching the tight ones than strengthening the weak ones.

Hope this helps a little bit!

[dielivnsin]

Docs are so stoopid sometimes. You probably need some very specific therapy exercises designed by an OT.

The scapula "wings" out because of a muscle imbalance and the muscles involved are rather small and hard to isolate. I know because I had surgery some years ago on my shoulder, and I wasn't diligent enough to prevent this so my right scapula sticks out. One exercise they gave me was to stand with back and shoulder blades against a wall. Raise arms up so that forarms are at right angles to shoulders (as if stopped by police?). Try to keep the shoulder blades, elbows, and back of wrist touching the wall and slowly slide hands up over your head. Harder than it sounds to accomplish, harder still to explain in words, and I'm not sure how you could adapt this since you're in a chair.

Another exercise was to grab a towel behind you - one hand on your back at waist level, one hand reaching behind you over your shoulder. Get your hands as close as you can together, then slowly bend over which increases the stretch. Again, you may need some type of adaptation or assistance to manage this.

Depending on which muscles are paralyzed, you may need to work more on stretching the tight ones than strengthening the weak ones.

Hope this helps a little bit!
[/quote]


some of ur suggestions I cannot do, due to my limited mobility, but I will do what I can. Ive told my ot countless times I need to work my shoulder cuz its hurting more and more. She refuses to do any intense range of motion with the side that wings claiming it could cause more damage. I guess im going to have to get hateful cuz she simply will not listen.

I appreciate the pointers, but I've got one question for you. Was your scapula ever fully corrected?

Thanks alot

[Tetracyclone]

Dilivinsin,

You need to shop for a different OT. This one has no talent for shoulder work.

[hooplady]

Dielivnsin,
No, my scapula is still a bit wingy but since I'm AB it doesn't affect me nearly as much as you. At this point in my life it's just another bit that's falling apart. Sorry, I figured most of those suggestions would be tough to adapt. Tetracyclone is right, maybe it's time for a fresh OT.