25 replies to this topic

[Totallydevestated]

My husband was involved in an accident where he suffered 'severe nerve damge' and has been told that he's got a 4% chance of walking again, but the dr's pretty much said with that percentage they will just call him a paraplegic!!!
Should I just take it at face value or beleive that he will never walk again???
I am still in total shock. The accident was two weeks ago. I know I don't expect him to jump right up and be going because he's still in bad shape from the other injuries, but I'm just wondering if anyone else has had the same experience that they were given a slim chance and beat the odds??
Or if they did, maybe they wouldn't even be on this site???

[mcferguson]

Totally,

Sorry to hear about your husband's accident, I know how tough it is early on. The frustrating thing with spinal cord injuries is that there is no sure thing. Your husband may walk again, or he may not. He may recover some movement and sensation, or he may not. In my case the Dr was right, I haven't recovered any sensation or movement and my accident was 1.5 years ago. Others have a different experience.

The thing for your husband to do is to try his best at therapy and hopefully something will come back. Two weeks is too short a time for a spinal cord to heal, so don't lose hope yet. The general rule of thumb is about 2 years for some kind of recovery, but even that is not set in stone.

The best approach is to take life a day at a time make the most of every day. It would be good for both you and your husband to make a habit of coming here as there are many who know exactly what you are going through and are happy to help.

God bless.

[DaveP]

It's important to get in the right frame of mind as early as possible. Be positive, be strong, set goals, targets, etc.

Rehab is like Basic Training for a soldier - the harder he pushes himself, the better shape he'll be when he comes out of training/rehab.

Try not to baby him or do too much for him. And talk about everything, especially your feelings too.

If you let bad habits kick in now, it'll be hard work to break them later. He can live a totally independent life so push him to achieve this as this'll be important for his confidence. He'll be able to everything for himself, dress, wash, toilet, etc and will be able to get in and out of a car on his own, put his own wheelchair in the passneger seat, and drive his own car.

And sex is not something of the past. Forget what they say in films - search this forum and you'll find that there are many happy ladies here with paraplegic husbands. It's going to be different and you'll need to "start over" and find new ways to have sex, so don't worry about that.

This is a great forum so feel free to fire away with all your concerns and you'll find many people here that will have the answers to your questions.

[Soryfam]

Welcome. This is a good place for you to be. As the others said, it is way too early to know what will happen. My doctor didn't think I was going to survive surgery, and really didn't think I'd walk again. Today he is ecstatic that I walk with a cane/sometimes use a chair. I can drive myself, although I haven't been able to go back to work because of severe weight lifting and walking restrictions. It's been about 2 1/2 years now, and I haven't seen much change in the last year, but I have heard of people improving well after the two year mark.

I also agree that attitude and setting the tone now will make a difference later. I'm not trying to be mean, but might you think of changing your screen name? For your hubby to see "Totally Devastated" as your state of mind could be pretty depressing to him. Just a thought, NOT a criticism. Please come back often and post whatever questions or thoughts you're having. The people here can give you support that you'll find nowhere else.

Sandy S

[KeepTheFaith]

I was given a 1-3% chance of ever walking again and I am taking unassisted steps with a walker. Work hard in rehab to recover as much as possible. (Exercise, Weight Bearing, Electrical stimulation) Throw everything but the kitchen sink at it over the next few years. THERE IS ALWAYS HOPE

[Tetracyclone]

The words "I don't know" are very difficult for many professionals, yet there is no way for them to know at this point. Consider this your first experience with a Doctor being hugely, egotistically wrong, and ready yourself to do a lot of research. Good luck, and my deep sympathy for this catastrophe in your family.

[JimG]

I agree with the others.

It's not "over" until it's over.

I had numerous doctors tell me my paralysis was due to ALS, not the T6 herniation.

They were flat out wrong.

They don't know everything, and they're not God.....though some will occasionally act like Him.

As an aside.....

We accidentally ran into a guy last month who was a C5 L5 incomplete (broke both vertebra and injured the cord at those locations).

He was a quad, lying in a hospital bed for a year as doctors told him he'd never walk again.

Five years later, he was back teaching yoga, kickboxing, and breaking horses, and when we said goodbye.....he ran across the street to avoid traffic.

Now....while his example maybe rare....it is possible, it does happen, and there are living examples of it amongst us.

Edited by JimG, 07 April 2010 - 08:08 PM.

[gordonr]

JimG, on Apr 7 2010, 08:05 PM, said:

He was a quad, lying in a hospital bed for a year as doctors told him he'd never walk again.

Five years later, he was back teaching yoga, kickboxing, and breaking horses, and when we said goodbye.....he ran across the street to avoid traffic.

Jim,

I'm sorry, but this just sounds silly to me. Like REALLY silly.

First of all, there is no such thing as a quad, lying in bed for over a year, not unless there are some other medical issues. Look around the forum and you see quads in chairs coming home after a couple of months (if they have not been too beaten up), and these are people who have really clipped the cord in such away as to be off the list for major change to their quad-status.

So what? The guy lay around in a bed for a year and then suddenly "got better"? I don't believe it. Not even to be polite.

Or he had very little wrong with him to begin with and suddenly got over his depression and started to use what he had?

That is more likely. But then he should be honest about the fact that the injury was in his head, not his body.

If the guy had REALLY damaged his cord, he would still be in a chair. And that, my friend is that.

So, either he did NOT damage his cord, or there was no miraculous recovery.

Take your choice.

Best Regards,

Gordon


Now Totally,

(Sorry about that aside to Jim)

What does it matter whether you think he is going to walk again or not? You could believe he was, and be wrong. You could believe he wasn't, and also be wrong.

Both situations are negative and without upside.

What you have to do, is keep an open mind and put the most into rehab, and see what that most comes up with. But if you want to be happy wih this, you have to realize that he can be happy as a para. Without that understanding, the whole proccess is going to be mental torture.

I mean consider the alternatives:

Let's say You talk yourself into believing he is going to walk again. And then he doesn't.

Does that mean you are going to come back here in a year or two calling yourself EvenMoreDevastated? What do you think the disappointment of letting YOU down is going to do to HIM?

Or let's say you get negative now? Then you start saying "Oh what the hell? What are you working out for? You know your never going to walk anyway? Why don't you just take up drink or put a bullet in your brain right now?"

Well let me clue you in. I am never going to walk again. But I am not a suicidal drunk (few of us are). I am happy, 30 years in the chair. And every little bit of functionality I develope as the years go by is WORTH IT. (Regardkless of the fact that I am not going to walk).

Walking is over rated.

Life is a wonderful gift. Make the most of it. Period.

Encourage the guy to get on with his life on the best terms possible, and ignore any temptation to set stupid goals. Those goals will always be too high or too low. Instead, go right for the mature understanding that you do not know what the rest of YOUR life will be any more than he does. And both of you, can at bes, do your best. Whatever that turns out do be.

And by the way... While you're trying to get him to do the best with what he has left, why don't YOU get out there and start doing the best with what YOU have left. Just because you can walk is no great shakes. What else can you do?

Believe me (well don't believe me, read the reams of posts by other longterm paras and quads on this site. Trust THEM) Life is fine after SCI.

He doesn't HAVE to escape this "terrible fate" to be OK. And if he DOES miraculously recover, believe me, you will know it soon enough. In the meantime, just soldier on.

And if you have a God, thank God for every day you are alive. In bed. In a chair. Walking. Or what have you.

And if you are not religious, take a little moment to breath, listen, exhale, and say "Wow... What a wonderful life!"

Best Regards,

Gordon

[JimG]

Well gordonr.....I'm just relaying what he said.

I didn't say he miraculously jumped out of bed, dancing and singing "halleluia".

I said he was an incomplete quad in the hospital for a year and five years later teaching yoga, kickboxing, and breaking horses.

I would assume people would get that there was a whole bunch of PT and hard work involved in the process to get there.

[DannyTO]

Twenty-three years ago I fell out of a tree and shattered two vertebrae and cracked two more. The docs replaced one of my vertebrae with my 12th rib and one with a donor piece from the bone bank. 75% of my spinal cord was encrusted with bone fragments, which the docs cleaned up during my first surgery.

After ten days being flipped every two hours on a styker frame bed (the first four days I was on life support), I went in for a second surgery where they placed a metal rod in back. I skipped the cast stage as the docs were 100% sure I would never walk again. This was so I could sit in a wheelchair and begin my new way of living.

I walked for the first time (second time around) around ten months later.

Not trying to provide false hope, and I know my doctors did amazing work (yay for socialist health care!), but it can happen!

Best of luck to you and your bf.

[Texaswheelz]

Dr.'s are going to paint a bad picture in these circumstances no matter what, otherwise they get sued. Learn what you can about his injury, the main thing being whether this is a complete or incomplete. Although they could still be wrong, I was told both things by the same Dr. when I was injured, it was incomplete at first and then complete 2 weeks later, then back to incomplete... I stopped seeing that Dr.

If his injury is incomplete then there is a much better chance of him walking again, people with spinal cord injuries do it all the time. A spinal cord injury doesn't automatically = paralysis. However if he is a complete, there is probably 0% of him walking again. I don't know of anyone that is truly complete that has walked. That means the cord was completely severed, no signal is being passed, no way, no how.

Hopefully he is incomplete and progress can be made. I have known numerous people that were incomplete and have gone on to walking assisted with a walker/cane/crutches to full recoveries, only time will tell.

As to the Quad who laid in bed for a year and is now teaching yoga...etc. He didn't mention that he laid in bed for a year as a quad who couldn't move. If he had any sort of issue with all 4 limbs then they would have labeled him a quad, doesn't exactly mean he was Christopher Reeves. I have had more people then I can count come up to me over the years and tell me their story about how they hurt their back and spent z amount of time in bed or x amount of time in a chair and to look at them now, they were walking fine. That's all good and dandy, doesn't mean their injury was anything at all like mine. I can promise you that I can pray to God all I want and push myself and believe and work hard and...etc all the other stuff people say, but it's scientifically impossible for it to happen unless science comes up with a way to regenerate those nerves in the future. But you still work hard: to be independent, to live life, to enjoy life and help others enjoy theirs, to grow and learn...etc.

[Parachute]

Last year my mum, fiancee and friends were told I might not ever walk again, but that's what a lot a people get told. I was injured on Sun 29 March 2009. Mr Raza at Wakefield hospital, Yorkshire Spinal Unit admitted to me on week 12 that he thought that I was finished. He can not believe my recovery. My fiancee told a nurse that we were getting married on Sat 1 Aug 2009 and that I said that I will be there. Nurse replied, well just let him think that then. I am C3-4 incomplete. Anyway my fiancee was told we might not be able to have a family but now she is 20 weeks pregnant. Yes I did make my wedding and I walked down the isle, unaided.

Google, Patrick Rummerfield and read his story.

[jscott92064]

My husband became a para after a routine disketomy last November. It was a shock for both of us as we had really reseached this doc and were told this was just a weekend thing.

His doctor says my husband is "complete", but I disagree and think it's too early to make that assessment. (The doc may have been doing this for insurance purposes - not sure.)

Initially Steve could not move anything from mid-chest down. Now he moves his entire stomach - that came about two weeks ago --so almost 4 months after surgery.

He also moved his thighs in and out just the other day --not big moves, but something. (His doc didn't see it and is skeptical. His PT thinks he really did move. I watched him do it too--it sure looked like he was using his brain to connect the dots.)

All this said, whether he recovers more or not, I am just trying to be supportive of my husband's journey and let him know I am just happy to have him alive and he's still my best friend and the love of my life.

I agree with GordonR and suggest you reread his words. It is true you can be happy. Steve and I find something to be happy about most days.

Other days, I admit it's been challenging --for example, Steve came home from the hospital in January and recently he was just admitted back with a nasty UTI --had to have an ambulance take him - that sucked.

But hey, he promised me if I married him, I wouldn't be bored and well, I'm not. That's for sure --ha ha.

Good luck to you. Keep up the spirits --everything will sort itself out. For me, knowing other people make it through this journey to live happy lives helps me realize I can too. I hold on to that.

[hurbshankin]

No gaurantees either way. Tell him to bust ass in therapy, whatever he's got he'll want to be strong! It'll be a long row to hoe, the marathon starts today! This board will serve both of you well.

Hurb

[DannyR]

I was told by my dr the day before my surgery that he didn't know if I would be able to walk again or not. I was devastated. I wasn't able to walk without assisstance [my wife]. She had to help even while I was in the hospital before surgery. I was diagnosed as a quad but my injury was incomplete. I walk with a cane and it isn't pretty but I am mobile. My life has changed in so many ways but it's a good life. The biggest reason for that is because of the family support. I always knew that my family loved me but I never realized how much. Trust me and I know that it's hard to see it right now but things will work out if you let them. I wish you all the best.

Danny

[MiasMama]

In March of 2009, my mom and brother were in a terrible car accident... He was unharmed, but she shattered her 12th vertebrae and her 11th compressed her spine. Initially, her injury was diagnosed as a T12 complete, which gave her less than a 1% chance of EVER walking again.

At first, things seemed hopeless. Her entire life had changed for the worse and NOTHING was the same. My mom is the most independent person you'll ever meet, and having to rely on others for everything definitely took its toll on her. She's also one of the most strong willed and motivated people in the entire world... So I never gave up hope. The hardest part is trying to show her how much faith I had in her... She had her fair share of bad days where life seemed hopeless. Keeping her believing in herself was the hardest part...

She began physical therapy 2 months later, and by August, she was fitted for leg braces. On Halloween, 2009, she took her first steps with her leg braces and a walker, but this is much more than the doctors ever gave her hope for. At her one year appointment with her spinal surgeon, she was rediagnosed as a T12 INcomplete....

Today, she can walk 80 feet, still using the braces, but she's gradually improving. I have faith that she will be 100% someday, but it's gonna be a lonnnng road.

All you can really do is offer as much love and support as you possibly can... It's gonna be a long and difficult road, but with enough persistance and determination, anything is possible

[Motor]

Totallydevestated, on Apr 7 2010, 10:32 AM, said:

My husband was involved in an accident where he suffered 'severe nerve damge' and has been told that he's got a 4% chance of walking again, but the dr's pretty much said with that percentage they will just call him a paraplegic!!!
Should I just take it at face value or beleive that he will never walk again???
I am still in total shock. The accident was two weeks ago. I know I don't expect him to jump right up and be going because he's still in bad shape from the other injuries, but I'm just wondering if anyone else has had the same experience that they were given a slim chance and beat the odds??
Or if they did, maybe they wouldn't even be on this site???

Hello and welcome to this great site. Fist let me say I am sorry about your husbands accident. However both of you need to hit this head on and be strong from day 1. We here on this site have made mistakes so we will help you not make the same ones. 1. Make sure he follows all rules and listens to therapists, you listen as well. Do home exercise that they ask him to do. It is important. He needs to stay as stretched as possible. 2. As his wife watch everything the nurses and aides do in case you need to do it but may I suggest that you use any nurses aid for help like bathing, bowl/bladder etc. Having my wife as my caretaker for 5 years killed my marriage. She just couldn't be intimate after changing a cathader or a shitty diaper. It gets worse before it gets better Make sure you let him do for himself. Make as indepandant as possible sooner than later. I made many mistakes in that area and it recently came back and bit me in the ass when my wife walked out on me last month. April 10th would of been my 23 wedding anniversary. As far as will he walk or not..well there is a lot of stuff that will determine that. Much beyond our control. The spine and nerves heal approx a millimeter a month I've heard so who knows. I was injured in August os 2004 and after some corrective surgery I am just getting up with a walker and walking 40-50 feet, but far from functional. To me it is a tease. It is like go to a bar and almost taking a girl home. Frustrating. But you gotta crawl before you walk. Never give up. I still drive a car and a motorcycle. It is not the end of the world. You can live a productive life in a chair. Yoiu can have and raise a family with todays proceedures. I run a support group in florida and if you like check out our website for info www.sflscisg.org we are the Spinal Cord Support Group of S Fla

Good Luck

Richie aaka Motor
Treasurer
SCISG

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[poizon74]

I fell from a roof last November (2009) and shattered my L1. That night they rushed me into surgery and fused my T12 to L2. When I woke up the next day my surgeon was looking over me. He asked how I felt and I told him I was still in a lot of pain and couldn't more my ankles or toes. He told me the pain may never go away and that I might never walk unaided again. Now my case it turns out wasn't so bad, there wasn't too much damage to my chord, but still it was damaged in a very sensitive area.

I still remember the look on my neurologist's face when I showed him I could move my toes after only a few days, his chin almost hit the floor. It was a very long road to recovery and now almost 5 months out I can walk unaided and the pain has subsided immensely. I do PT 3 times a week and exercise as much as I can and I still hope for a full recovery. I can even now run for just a little (though it is sloppy).

I would say like many have said don't give up hope, nerves are weird and no one can predict what will happen. That said I also agree that most of the return happens fast, I made the most progress in the first month after my injury, since then it's been slow but still improving.

[The Black Sheep]

Totally,

Many of the other posters have said exactly what I'd like to say: Be positive. The great thing about uncertainty is that there is hope. In a lot of our cases, we've made progress, myself included. Others haven't been so lucky.

I used to watch the news with frustration when Stem Cell research in the US was denied government funding because I was certain that'd be my ticket out of the chair. Every year goes by and someone claims there's a cure right on the edge of being made public. I've been paralyzed from the chest down for about 12 years and tried endless PT, acupuncture, cupping, hypnosis, spiritual prayer, etc. and about 5 years ago I stopped experimenting. My doctors told me, initially, that I'd be paralyzed for life if I didn't gain anything in the for 3-4 months. 7-8 years later I started gaining better use of my ankles and toes. Then my knees and hips. Now I can walk 200 feet with a walker and I'm trying crutches. Despite what doctors might tell you, they may not be right. A LOT of people here have been told wrong. Keep hoping and trying, and our thoughts are with you.

[Meadowlarkmark]

Get on with life--sure you can spend all your time trying to walk, a couple of feet here or yards there or even maybe miles but what kind of life is that? They will find the magic bullet some time and maybe even cure SCI but I'm not holding my breath--get on with your life and enjoy the gifts as they come.

[Texas Angel Ang]

Sorry to hear about your husband and your still in the early stages!

I have defeated a lot of odds since March 7, 1996. Just remember to stay positive and keep him in shape. I agree that "getting on with your life" is important but it's also important to maintain any type of muscle strength that he has. There are a lot of great programs that are POSITIVE and is like having a personal trainer. They may not tell you "you're going to walk again" but they work with what you have and if you gain more... that's great!

At one time I was walking with assistance, my upper body was more "asleep" lol. When I hit 21 I was ready to experience life... I'm just now starting to work out again, I have regressed a lot, but I did defeat a lot of odds and the doctors are still shocked at what I have accomplished.

Welcome to the great site with many opinions

[DebbieR]

Sugery was on Feb 1 2010 for compression fracture with rods, screws, and cement...ohhh it hurts

I am L1 incomplete -compression fracture. Docs told me I was almost complete and may never walk again however, they were shocked that I had complete control of my B&B. After sugery the only thing I could move was my right and left toes. I have feelings in both my legs just parts of my left hips were numb. I cried everyday and even though about killing my self. How could this have happened to me? here I was a hard working, had two jobs, sports car driving, clubbing & dancing- high heels sexy party girl to FREGGIN this????? I hated P/T, especially when they asked how was your weekend.. I asked them to please help me walk and they told me I couldnt!!.. I would fall.

I left the hospital on March 25th 2010. and, being home was even more hell than being in the hospital. I was shopping for a standing frame when I decided to purchase a walker. with help from my mom, and home p/t I stood up -all of a sudden I could just feel life up and down my legs. all week I stood up every hour for five min. It was hard and my legs gave away more than once. As everyday went by and the more I just stood up- the more muscles seems to be moving.

I decided to walk (with my walker), for the first time on Easter April 4th , with family waiting to grab me if i fell- i walked 20 feet.

everyday I try more and more, I HATE the wheel chair and refuse to use it. I am now able to walk a few steps without my walker. working on balance and working on getting my muscles stronger. I can walk about a NY block with my walker.
i just purchased a bike to help with my hamstring.

I cant bend much, or do much things for my self but I am happy to be walking what ever lillte it may be. I hope to keep improving and keep on walking better and stronger. I have a new outlook on life now.

I still cry everyday- I dont think anyone can fully understand the trauma ive been through. I wanted to give up BUT I DIDNT, family support and keep praying!!!
judt dont ever give up hope!

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Edited by DebbieR, 02 May 2010 - 08:58 PM.

[Parachute]

Parachute, on Apr 8 2010, 11:06 AM, said:

Last year my mum, fiancee and friends were told I might not ever walk again, but that's what a lot a people get told. I was injured on Sun 29 March 2009. Mr Raza at Wakefield hospital, Yorkshire Spinal Unit admitted to me on week 12 that he thought that I was finished. He can not believe my recovery. My fiancee told a nurse that we were getting married on Sat 1 Aug 2009 and that I said that I will be there. Nurse replied, well just let him think that then. I am C3-4 incomplete. Anyway my fiancee was told we might not be able to have a family but now she is 20 weeks pregnant. Yes I did make my wedding and I walked down the isle, unaided.

Google, Patrick Rummerfield and read his story.

I was in hospital this time last year and they said, I may not walk again. I had a mountain to climb. Well, on Sat 1 May 2010, I climb the Yorkshire Three Peaks which are not far from being mountains. On Sun 9 May I will some how, attempt the Leeds Half Marathon.

Bet you could have got more than 500/1 this time last year for me to be doing that.

Don't ever give in. If you know you'll get there, you'll make. If you doubt yourself, the fight is almost over.


Parachute

[Edinburgh Colin]

DebbieR, on May 2 2010, 09:43 PM, said:

Sugery was on Feb 1 2010 for compression fracture with rods, screws, and cement...ohhh it hurts

I am L1 incomplete -compression fracture. Docs told me I was almost complete and may never walk again however, they were shocked that I had complete control of my B&B. After sugery the only thing I could move was my right and left toes. I have feelings in both my legs just parts of my left hips were numb. I cried everyday and even though about killing my self. How could this have happened to me? here I was a hard working, had two jobs, sports car driving, clubbing & dancing- high heels sexy party girl to FREGGIN this????? I hated P/T, especially when they asked how was your weekend.. I asked them to please help me walk and they told me I couldnt!!.. I would fall.

I left the hospital on March 25th 2010. and, being home was even more hell than being in the hospital. I was shopping for a standing frame when I decided to purchase a walker. with help from my mom, and home p/t I stood up -all of a sudden I could just feel life up and down my legs. all week I stood up every hour for five min. It was hard and my legs gave away more than once. As everyday went by and the more I just stood up- the more muscles seems to be moving.

I decided to walk (with my walker), for the first time on Easter April 4th , with family waiting to grab me if i fell- i walked 20 feet.

everyday I try more and more, I HATE the wheel chair and refuse to use it. I am now able to walk a few steps without my walker. working on balance and working on getting my muscles stronger. I can walk about a NY block with my walker.
i just purchased a bike to help with my hamstring.

I cant bend much, or do much things for my self but I am happy to be walking what ever lillte it may be. I hope to keep improving and keep on walking better and stronger. I have a new outlook on life now.

I still cry everyday- I dont think anyone can fully understand the trauma ive been through. I wanted to give up BUT I DIDNT, family support and keep praying!!!
judt dont ever give up hope!

Good on you keep trying it's never time to give up. As you see the more you push yourself the results come even the small ones can give youa huge smile!
keep up the good/hard work.

[MDK]

Nobody thought that Kevin would walk again but he does with the walker about 50 m , so do have faith and hope.

Mioara

Edited by MDK, 04 May 2010 - 12:52 PM.

[dom]

DebbieR I dont think anyone can fully understand the trauma ive been through'? i think a lot here can!