19 replies to this topic

[Jackie00]

Hi. My brother sustained a C4 level injury while diving into the water at the beach in August. His injury is not complete and it's been about two months and a week since the accident. He will be decanulated soon from his trache and his breathing should end up being fine. He can currently move his head, his neck is technically healed, and he can shrug his shoulders. He gets spasms all over his body, mostly when he is moved, some more severe than others, but I've heard that some patients get spasms that are very bad, and his are tolerable. He has pins and needles all over his body, mostly random, but especially the palms of his feet, his hands and his upper body more so. Recently he can control some bicep strength in his arms very slightly and was able to, with assisted elevation, bend one elbow about 10 degrees and the other 15 degrees with this strength, and I heard that that is the start of that strength.
I was wondering if someone honestly has good enough knowledge and hope to tell me that these are good signs, that he can gain some of his life back. He is only 18 years old and is currently spending what should have been his first semester of college in acute spinal chord injury rehab. He hasn't been home since august and he is SO brave. He can crack jokes and put on a smile, but I know he's depressed and misses the way he used to be, more than anything. He is surprisingly confident sometimes, though, which helps me to be confident. He's said more than once that he's going to walk out of rehab, visit the places where all of this happened, the doctors and nurses, and look back on what he conquered. I believe in him and do believe in miracles. He had plans to work in medicine and I want him to continue those plans. Someone please tell me he has a chance because I know it could have been worse, that it could have been complete, but it's not. I know his injury is unfortunately C4, but I think the body does miraculous things and that people come back from situations that had bleak outlooks.
He got gipped and my whole family is still grieving and in shock. We're all dealing, but were all unprepared. Both of my parents are nurses and this is their worst nightmare.

Any positivity, any success or recovery stories, any medical or therapy suggestions, please tell me. I'd love to hear anything good. I already know the bad possibilities, so hearing about them again won't help, to say it bluntly. I'm not thriving on false hope, but I do have real hope. I'm not even that religious, but I have my own faith, too. I just really want to know if other people share how I feel and think more good is yet to come for my brother. And for anyone else going through this, I have faith for you too.
Thank you,

Jackie

Edited by Jackie00, 17 October 2009 - 05:02 AM.

[Ratticis]

August sucks!

The fact that he's regaining some strength is a good sign, and a positive attitude helps. 2 months is nothing. Rehab is a long and really never ending process. Hopefully he does make a recovery, but if not, life still isn't over. Unfortunately, and as much as I hate to say it, if he doesn't make a full recovery there's the risk of slipping into deep depression. I tried every waking hour of every day for 3 months trying to move anything and finally quit making my self depressed. I remember the day when I realized this is how its gunna be from now on. My parents, my doctor, and the physiotherapists had a meeting to discuss where to go next (this was about 8 months and 4 surgeries in to my 17 month hospital stay). Acceptance is not giving up.
That being said, don't give up! Do everything he can to improve! Keep moving those arms and building that strength! Meet with PT and OT. It sounds like he has a good supourt system with his family, which is also very important.
Best of luck!

[allis53ca]

these are many good things, i'm c-4 also.....and as Ratt said, its still really early

ANY movement is good, positive attitude to any point is good, being 18 and in good shape is good....theres many "goods" in his case .....however, this is no one elses "worst nightmare", this is his nightmare as everyone else is still walking...others around him need to get over their shock and sadness and focus on his......he may not walk out of rehab, but better to hope than to concede....and also as Ratt said, Acceptance is not giving up. ...its just moving on

[qbounce]

To say his neck is "technically healed" is such a misconception, as you probably know. It takes much longer for the swelling to completely go down after surgery. And within the next several months he may expect to see more improvement in his arms once that swelling fully subsides.

That said, welcome to the site and come back often. Introduce your brother here when he gets the chance. I've learned many things here in such a short time that would have taken me years to figure out on my own.

[Wicket]

Welcome Jackie

With incomplete injuries there is a chance of some recovery within a two year period (maximum), but usually it's a one year window I believe. Any recovery will occur within this time if it does. Prognosis is always better for those injured young rather than older. The whole concept of having an SCI is daunting and owerwhelming initially but it gets easier to manage but take it a day at a time. Life changes with SCI; there are permanent losses (which bite), and life is different.

Miracles are the nice "ideal" to hope for but this is asking for disappointment; speaking from my own experience it means so much more for the person injured just to know people will still be there regardless of the outcome.

It's great to have you and your brother here.

Edited by Wicket, 19 October 2009 - 05:16 AM.

[E-DOG]

I'm but a lowly T-4 but paralyzed is paralyzed no matter the level.

That said, I had no motor function what so ever for the first 3 or 4 months after my injury. Then one morning I woke up finding I was able to move my big toe on my left foot. I screamed like hell for a doctor and when one arrived I showed him the inroads I'd made in my recovery. Hoping to hear I'd be walking again real soon, I was devastated to find that things were at best "hopeful."

Here after two years I've gotten quite a bit more motor back. Enough to help dress myself. Move around in bed. Get my feet up on the foot rests of ol' Betsy, my mighty steed and kick the daylights out of most any snail that makes the mistake of getting in my way.

Which is to say, if your brother has regained as much as he has, as quickly as he has then he should be seeing a lot more as time goes by.
If you're looking for someone to say "hey, no sweat babe, the guy will be up and at 'em in no time" I doubt it will come from anyone on this site.
Most of us here are simply to pragmatic to fill you with hopes and dreams that probably won't come true. That would be cruel indeed.

With only two years and change under my belt I sure as shit ain't no expert. Why hell lil' missy, the guy may very well fool us all and run a marathon next year but I think it's best not to have any expectations as they are nothing more than the building blocks of anger and resentment.

It might be better to focus on the NOW and give encouragement when he needs it and a shoulder to cry on when he needs that.
Mean time, bring in a laptop if you have one and sit on the bed next to him. Introduce him to our little home away from home here, maybe feed him a lil' pizza. And just BE THERE FOR HIM.

Time and only time will tell what happens next.
Mean while, welcome to Sargent Simon's Select Sect of Seriously Snafu-ed So and So's.

E-dog

[megatrig]

You know the saying abpout "time"!

sadly that waiting game really appliers here!

Sorry but it just that!

Every "day" ... well wekk, month and sometimes longer will show a change! Or nort!!

In such an early stage it looks like you are getting big changes! A great sign!

Moving on with his "new life" now is the big one whilst watching changes too.........

more anon

hugs to you both
xxxxxxxxxx

[gordonr]

Jackie,

What really matters is looking after his health. Life is not a mental construct, it is physical. You DO have a healthy mind in a healthy body. And a sick body will give you a mind that is prey to all sorts of disorders.

The SCI must, and let me shout this here, MUST prevent pressure sores. Pressure sores kill.

(Don't know what pressure sores are? Well all of that info is here.)

The SCI must, and let me shout that again MUST have an adequate irrigation of the bladder. That means drinking a lot. And voiding a lot. If the voiding is a problem, and it usually is, then that problem must (MUST) be solved. You can not cheat on the intake to control the output. Not unless you want to die young.

Now on this board, we have VERY experienced SCI who have pressure sores, in some cases, Urinary Tract and Renal (kidney) troubles in others. Some have both. And in fact even if we are healthy, we are constantly preoccupied with these issues.

So if people who should know better are not always up to the task, you can see how important it is for a newcomer to SCI to immediately get a grip on these things.

There should be NO sores. IF there are, that is an EMERGENCY. A hundred times more important than the psychological part. The pysch part will improve over time. And the better the underlying physical health the faster it will improve. But the sores and the UTI are physical. They will cut short your life and render any discussion of psychology irrelevant.

Love,

Gordon

[Jackie00]

Thanks to all so far. You're very helpful. I'm still hopeful, but the honesty is good, too. Still interesting in more feedback and faith if you can spare some.

Jackie

[Ratticis]

Never lose faith, I'm still hopefull that one day I will walk again, but until then I'll continue happily with what I've got.
And yes, pressure sores are evil. I'm stuck in the hospital right now dealing with some. Plus the ones on my heals that are finally healed took over 2 years. Plus the on that was on my tailbone was at one point so deep you could see the bone.
So just be careful and bitch at those useless doctors and nurses to make sure stuff gets done

[mcferguson]

It's a good sign that your brother has regained some movement and sensation already and he can likely expect more. One of the frustrating things about SCI is that everyone's case is different and you guys will have to figure out his body's limits. Just keep pushing. I haven't gained anything outside being able to instigate some minor spasms in my legs and I've been injured almost 1 year. I have faith and believe in miracles, too, and I am believing God for a miracle. I will pray for your brother also.

In the meantime, like others have said, he has to take care of his body. Pressure sores start as red spots, make sure they go no further by removing the pressure from that spot. Drink plenty of fluids, take cranberry pills, and void often to reduce urinary tract infections. Make sure his bowels evacuate like they did prior to his accident (blockages are no fun at all, let me tell you! )

Read as much as you can and stay on top of things.

prayers to you and yours,
Michael

[McTavish]

Jackie00, on Oct 17 2009, 05:59 AM, said:

Hi. My brother sustained a C4 level injury while diving into the water at the beach in August. His injury is not complete and it's been about two months and a week since the accident. He will be decanulated soon from his trache and his breathing should end up being fine. He can currently move his head, his neck is technically healed, and he can shrug his shoulders. He gets spasms all over his body, mostly when he is moved, some more severe than others, but I've heard that some patients get spasms that are very bad, and his are tolerable. He has pins and needles all over his body, mostly random, but especially the palms of his feet, his hands and his upper body more so. Recently he can control some bicep strength in his arms very slightly and was able to, with assisted elevation, bend one elbow about 10 degrees and the other 15 degrees with this strength, and I heard that that is the start of that strength.
I was wondering if someone honestly has good enough knowledge and hope to tell me that these are good signs, that he can gain some of his life back. He is only 18 years old and is currently spending what should have been his first semester of college in acute spinal chord injury rehab. He hasn't been home since august and he is SO brave. He can crack jokes and put on a smile, but I know he's depressed and misses the way he used to be, more than anything. He is surprisingly confident sometimes, though, which helps me to be confident. He's said more than once that he's going to walk out of rehab, visit the places where all of this happened, the doctors and nurses, and look back on what he conquered. I believe in him and do believe in miracles. He had plans to work in medicine and I want him to continue those plans. Someone please tell me he has a chance because I know it could have been worse, that it could have been complete, but it's not. I know his injury is unfortunately C4, but I think the body does miraculous things and that people come back from situations that had bleak outlooks.
He got gipped and my whole family is still grieving and in shock. We're all dealing, but were all unprepared. Both of my parents are nurses and this is their worst nightmare.

Any positivity, any success or recovery stories, any medical or therapy suggestions, please tell me. I'd love to hear anything good. I already know the bad possibilities, so hearing about them again won't help, to say it bluntly. I'm not thriving on false hope, but I do have real hope. I'm not even that religious, but I have my own faith, too. I just really want to know if other people share how I feel and think more good is yet to come for my brother. And for anyone else going through this, I have faith for you too.
Thank you,

Jackie

Hi Jackie and Welcome,
I agree with qbounce this site is fantastic, I have learned loads from it. It has been four years since my injury and I know there are people who , when I say I think I am going to walk some day, think I am off my trolley, but stranger things have happened and if you lose hope then you have nothing.
I was paralyzed as a child for five years and yet I walked out of the hospital, so if it happened once then it can happen again.
Good luck to your brother, it's early days for him yet, so give him all the love and support that he needs.

[gordonr]

Jackie,

Here are some positives from my experience:

Thirty years post injury and still alive.

No more than a month or two of miscellaneous hospital stays in all of that time (not counting the first six months of course).


All sorts of interests both financially gainful and non-gainful.

A very active lifestyle involving a lot of driving and generally moving around.

Married in a once very hot (now evolved to a more mature) relationship.

Four kids, with whom I am very close.

There is definitely life after SCI.

Best Regards,

Gordon

P.S. I have not worried about "getting better" for a very long time.

[CR_L1]

Hi Jackie,

I’m sorry I can’t give you the golden reassuring reply you are looking for but it does sound like your brother has the right attitude to have his life back no matter what recovery level he has.
As long as he keeps fighting to get his life back, he will I’m sure, it may not be as he expected but it will still be as rewarding.

Whishing you all the best
CR

[T11WALKER]

Jackie,

I agree with everybody else! The bed sores and his health is huge!!! If he is sick he can't work on his rehab!! What SCI specialty hospital is he at? I spent 3 months at the Shepherd Center in Atlanta Ga. Everybody was awesome there, I owe them my life. Every SCI is different. Hang in there and be there for him !! There is alot of good info on this site. The age of your brother is a good thing.

Steve

[guido]

I agree with what's being said here. SCI is a real journey: hang on for the ride. When I used to hill walk, whenever I was unfit, I would just say to myself "one foot in front of the other, in front of the other..." and concentrate on that. After a bit I would look back, and see how far up I'd got without realising. Silly, but that approach has helped me through a lot with SCI. What seemed hard gets easier, just a question of learning and trying.

And like your bro I still hope and work for recovery - but while getting on with the rest of my life too. He'll (you'll) work out his own approach over the weeks and months, but keep asking questions and keep hold of a sense of humour. And whatever approach he ends up taking will be the right one, as long as he is happy with it. Positivity will help more than you can imagine.

[Jackie00]

He at Helen Hayes in West Haverstraw, NY. They're great there and everybody is very cheerful, esp. one nurse, 2 of his respiratory therapists and his aids.
He hasn't had any bed sores, one slight red spot once, but it went away very quickly. He's interested in science and did a special program in high school, so he knows more about it than me, the terms, the risks, etc. He has a pretty descent sense of humor, better mood earlier in the day. He is on an anti-depressant/ mood elevator that seems to wear off after 5pm though. He is still surprised at how his injury was this severe because he said when he dove in the water, it didn't feel like it was a very hard impact and he didn't lose consciousness at all. He just suddenly couldn't move.
But anyway, he uses an electric stimulation bike and one system for his arms too, and he says he can usually feel the impulses. At first he couldn't, then his quads could, and today he said he noticed it in his calves. His biceps flicker a little bit during OT exercises when he's putting in effort, and he's trying new things in PT. He's holding his head up more strongly, too. He mostly just fights minor fevers a descent amount and had 2 UTI infections, the second one more minor. Those are the things I'm noticing.
It's still surreal, but I can't pretend this didn't happen. We're working on renovating to make it accessible for him and the amount that things cost is unbelievable. I've lived no where, besides college dorms, than in this house, and the change is hard for me, for everybody.

[Jackie00]

Curious, did any of you have pins and needles below your level of injury, or still have them?

[megatrig]

Jackie00, on Oct 23 2009, 10:53 PM, said:

Curious, did any of you have pins and needles below your level of injury, or still have them?

again Jackie .. early days for him!

These could gbe positive "useful" signs of sensation/movement returning or just sensory "muscle spasm" that a lot of spinal injuries get.

I'm sorry to say this as I do it lots so really I shouldn't but............tery not to read to much into every day issues or changes.

In 6 months you will look back and say wow .. really .. wow!

I did .. I can recal pushing up a "slope" well you wouldn't even see it now and thinking this is such hard work. 6 months later I remeber pushing upít and getting a flashback of "oh my god" that was so hard! wow!

This is a terribly tuff time yes. But things move on. You adapt

More so he will adapt and you won't see him as he is now but again just as your loveable/annoying brother again!

[Meadowlarkmark]

Like it's been said--be there for him, accept him for who he is. Be glad for any return and learn to work with what he's got. Patience is everything, have your brother pace himself, one day at a time. I am more the 40 years post and I still go one day at a time.