[newT12]

Hi, my boyfriend got in an accident in April and i have a few questions for this type of injury. He is now at rehab. After surgery he had some feeling in his right upper leg but not much in his left. He was pretty much at the waist level feeling wise.... In the last few weeks he is slowly getting feeling back in both legs. He is feeling pressure up to his knee now in the right leg, the left leg seems to be a bit slower but some feeling has come back as well.

His bowles and bladder are not working on their own. And the doctor stated that he would have to get feeling back in his butt first and if that doesnt come back he is considered a "complete". After the initial surgery, that doctor stated his spine was damaged but not severed all the way, and there is a chance he might be able to walk again. And that a lot of it will be up to his body, but at the same time they do not know how severe the damage was to the cord. I have done some reading up online and thought "complete" was if there was no feeling below the injury. He is obviously getting some feeling back and it seems to be progressing. However there has been no actual movement in his legs.

I usually work on range of motion with him every day, as they are only really working on his upper body in physio.. which i also find strange???? Should they not be getting his legs moving as well??

Also when i did his range of motion, his right toes moved. I have checked a few times now and his toes seem to respond to touch. At one point they were even moving without touching them. He would concentrate really hard on making them move, and they would move eventually. The nurses said that is not something they can ignore but didn't say much else about it. We obviously are taking this as a very good sign!!!

Any information or pointers would greatly be appreciated

[jass1]

Hi its good sign he getting feeling back,the first 6 months things come back quick after that it slows down he is probably incomplete.you have to wait its just too eary thing get yeaser with time

good luck

[ButterflyInAmbr]

It's great that he is having some feeling back so soon after the injury. Most sources say that if there are going to be any major gains in ability to feel or move, they will occur within the first six months, so it is still early yet to say whether or not this will ever happen. Whether he is considered complete or incomplete just depends on whether he has feeling or movement below the level of his injury. There is a whole range of ways this can manifest i.e. he might be able to move but not feel, or vice versa, or he might sometimes feel some things, but not always.

In terms of getting his legs moving in PT, there is no way to do this besides range of motion if he can't do it himself. At T12, there is the possibility of him learning to walk with leg braces and a walker or canes, but this is a more advanced skill. Right now it is important to teach him how to just do the basics like sitting up without falling over, getting in and out of bed, etc.

The toes moving is a good sign, it means that his spinal cord isn't totally severed and that some nerves still travel from the brain to the foot. However, these could just be spasms, or automatic responses that occur without any conscious effort on his part. These occur most strongly when something something touches the foot, but they can occur too without anything apparently touching. They are quite common in people with spinal cord injuries. That said, though, if he thinks that they are moving because he is making it happen, he should keep trying because with practice it could get stronger over time.

It's great that you are staying with him through this. Things will not be easy. You might want to look at the spouse/carer forum for more tips about relationships with people that have SCI.

This post has been edited by ButterflyInAmbr: 12 May 2009 - 02:41 PM

[T11WALKER]

I'm T 11 incomplete, I had similiar gains after the surgery. Today I can walk max 4 miles with no help !! This June 8th will be my 1 year post injury.

I DON"T KNOW WHAT BUTTERFLY IS TALKING ABOUT !!!

"In terms of getting his legs moving in PT, there is no way to do this besides range of motion if he can't do it himself"

WRONG !!!

Fes bike and locomat !!!!


I spent 3 months at the Shepherd Center in Atlanta in Ga. They are the best in my opinion. I owe them my life!!!!
But every SCI injury is different.

Steve

[T11WALKER]

newT12,

You need to read all my previous post, I think there is a option to do this.
I couldn't move or feel anything at first.

Steve

[newT12]

Thank you for all your info, i will see if there is a way to see your posts on here.

Should he being asking about using the FES bike right now? Or is that something he will be doing a little bit later??

[Hikkakaru]

newT12, on May 12 2009, 08:21 PM, said:

Thank you for all your info, i will see if there is a way to see your posts on here.

Should he being asking about using the FES bike right now? Or is that something he will be doing a little bit later??

assisted loco-motor training is a fantastic solution as soon as he is well enough to be in a real gym. FES is one of these solutions.

With a spinal cord injury usually the best time for therapy is as soon as he is medically stable enough to endure it. The sooner the better.

Sam

[newT12]

Thank you! Is he able to use an FES bike if he has had no movement in his legs?? the feeling is coming back, but besides his toes reacting to touch, he has had no voluntary movement in his legs

[BenjaminLucas]

newT12, on May 13 2009, 12:49 AM, said:

Thank you! Is he able to use an FES bike if he has had no movement in his legs?? the feeling is coming back, but besides his toes reacting to touch, he has had no voluntary movement in his legs

The toes reacting to touch are only spasms.

My entire lower half of my body responds to touch, so don't get your hopes up.

[ButterflyInAmbr]

T11WALKER, on May 12 2009, 09:29 AM, said:

I'm T 11 incomplete, I had similiar gains after the surgery. Today I can walk max 4 miles with no help !! This June 8th will be my 1 year post injury.

I DON"T KNOW WHAT BUTTERFLY IS TALKING ABOUT !!!

"In terms of getting his legs moving in PT, there is no way to do this besides range of motion if he can't do it himself"

WRONG !!!

Fes bike and locomat !!!!


I spent 3 months at the Shepherd Center in Atlanta in Ga. They are the best in my opinion. I owe them my life!!!!
But every SCI injury is different.

Steve

Well forgive me for my ignorance. They told me in my rehab program that electrical stimulation wouldn't do anything for me if I didn't have at least minimal control over leg movement (mine is a complete injury). I assumed she was thinking that moving his legs would improve ability; this is certainly true if his injury IS incomplete, but my understanding is that if the nerves aren't there at all (i.e. you have a complete injury), then nothing you do with your legs is going to give you the ability to walk.

[T11WALKER]

Butterfly,

I wasn'y trying to be mean, I guess we will have to wait to see if Newt12 is incomplete or complete.
I'm not an expert or anything, Just somebody who SCI injury wasn't as bad as others. At Shepherd I could barely move anything, I was on that FES bike almost everyday for atleast a hour ! I really think the FES bike got things going for me, it was the start for everything to start coming back, I would beg them for extra time and hang around to see if they had a cancelation. I've met people who were told they were complete then later they were incomplete. What if the FES bike could wake something up that was borderline? The bike is self powered so what could it hurt ?

Just my thoughts...

Steve

This post has been edited by T11WALKER: 13 May 2009 - 04:50 PM

[newT12]

Is he able to request using the FES bike? I've been trying to get him to ask for more things... he is not much a talker though. Met with his Physiotherapist the other day, and now will be doing more stretches once a day, and also asked her to include that in his program, not just upper body..

he spent the night at my place for the first time yesterday, it went better than i thought and was nice to get him out!! Was hard for him to go back though

T11WALKER, on May 13 2009, 12:46 PM, said:

Butterfly,

I wasn'y trying to be mean, I guess we will have to wait to see if Newt12 is incomplete or complete.
I'm not an expert or anything, Just somebody who SCI injury wasn't as bad as others. At Shepherd I could barely move anything, I was on that FES bike almost everyday for atleast a hour ! I really think the FES bike got things going for me, it was the start for everything to start coming back, I would beg them for extra time and hang around to see if they had a cancelation. I've met people who were told they were complete then later they were incomplete. What if the FES bike could wake something up that was borderline? The bike is self powered so what could it hurt ?

Just my thoughts...

Steve

[emarie]

When I was in the hospital, my therapists only worked on my upper body at first. I only worked on my lower body the last two weeks before I left the hospital. I took two steps on the parallel bars before I left the hospital and could pull myself up to a standing position and pivot in circles using a walker. It probably depends on how complete the injury is. I am an incomplete T12 - I am able to walk again, although it is slow and definately not easy - my feet turn out and when I get tired I tend to hobble. Now that I am regaining strength in my legs, I do a lot of work on the weight machines for my lower body and it seems to help. I have the tingly feelings all teh way through my legs now, where before it was either pain or nothing. I still can't feel touch or hot and cold externally on about 40% of my legs and feet. I have enough bladder control that I don't need a catheter but I also have to make regualar bathroom trips because I don't always know when I need to go and with a spastic bladder that is very bad. I can't feel my butt at all but I can go to the bathroom and walk on my own so have hope

[newT12]

Thank you for the information. I met with his PT and they are now working with his lower body as well 3 times a week :-)
The other days i work with him and was also shown some more stretches and range of motion exercises.

He has been at rehab for a month now, and staying strong!!

[Hikkakaru]

newT12, on May 12 2009, 08:49 PM, said:

Thank you! Is he able to use an FES bike if he has had no movement in his legs?? the feeling is coming back, but besides his toes reacting to touch, he has had no voluntary movement in his legs

An FES bike uses electrical stimulation, along with actually assisting the bike pedals electronically, so yes. Very little input has to be put in by the user.

newT12, on May 17 2009, 08:08 PM, said:

Is he able to request using the FES bike? I've been trying to get him to ask for more things... he is not much a talker though. Met with his Physiotherapist the other day, and now will be doing more stretches once a day, and also asked her to include that in his program, not just upper body..

he spent the night at my place for the first time yesterday, it went better than i thought and was nice to get him out!! Was hard for him to go back though

He should be able to request it. It's his recovery.

FES has benefits for both complete and incomplete, but with a complete injury you should look at more extensive range-of-motion therapies instead of FES. Because of the unlikelihood of functional return from FES for a complete diagnosis , there is better things to spend time on in therapy, if that's the case.

This post has been edited by Hikkakaru: 22 May 2009 - 03:06 PM

[Bevan-L]

Hikkakaru, on May 23 2009, 01:02 AM, said:

....with a complete injury you should look at more extensive range-of-motion therapies instead of FES. Because of the unlikelihood of functional return from FES for a complete diagnosis , there is better things to spend time on in therapy, if that's the case.

as a complete what other physio should i be looking at?

[newT12]

We are not sure yet if he is complete or incomplete. And my question would be as well what else he should be asking for then?

[emarie]

newT12, on May 25 2009, 09:36 AM, said:

We are not sure yet if he is complete or incomplete. And my question would be as well what else he should be asking for then?

I am unsure that I understand your question but I'll give it a shot. I'm don't remember if I mentioned it in my previous post but my injury is fairly recent compared to others - about 10 months now. From my limited experience, what they qualify him as right now won't really determine what he will regain. When I left the hospital they told me to have hope but prepped me and my family on being in the wheelchair for the rest of my life. My therapists talked me into a custom wheelchair which cost us thousands of dollars and I went home feeling dejected and pretty worthless as far as caring for myself and my kids. I could barely move my legs let alone consider walking. But we prayed (a lot) and I worked really hard to regain what I could. They told me I'd make the most progress my first year and I was/am determined to make the most of it. My accident was 8/10/08, I went home from the hospital on 9/29. I was walking with a walker by Thanksgiving and completely on my own by the first of the year.

My point is, doctors, therapists, counselors, nurses . . . "they" don't know everything. They can tell you what the best and worse case scenarios are. They can tell you about what to expect. They can tell you how to help deal with the pain, the frustration, the anger, etc. But they can't tell you what will really happen.

My advice (again limited) would be to help him remain strong and hopeful, be supportive but don't baby him. Make the best support system you can for him so that if you aren't available he has someone to call when the pain is overwhelming or he's just feeling down. People who will lift him up and make him feel like a mature adult versus the ones that stare anywhere but at you and pat your head like a child.

Find him an excellent physical therapist and make sure he has a solid routine when he gets home. (I found that having a steady routine gave me a feeling of safety and comfort when my life was literally turned upside down and it was so easy to fall into that dark place). Exercise is going to be extremely important so make sure he has some Therabands if you can get them - at first that'll be pretty much all he'll need until he regains some strength.

Hope it helps.

[newT12]

Thank you very much for all of your information! I pray every day and we all believe he will walk again.

What i was wondering about as well is what kind of physio he should be asking for at rehab. I mentioned the FES bike a few times, and also went to the gym at rehab but did not see an FES bike there. Also what he should be working on once he gets home.

thanks again

[emarie]

newT12, on May 26 2009, 09:31 AM, said:

Thank you very much for all of your information! I pray every day and we all believe he will walk again.

What i was wondering about as well is what kind of physio he should be asking for at rehab. I mentioned the FES bike a few times, and also went to the gym at rehab but did not see an FES bike there. Also what he should be working on once he gets home.

thanks again

When I went home I only had therabands. Then I started with ankle weights. My dad made me one of the square carts they use in therapy. It's a square - maybe a foot or so on each side - with wheels in each corner and a piece of carpet laid of the top (glued or stapled down, of course). I would lay on the living room carpet with the cart on the tile floor in the kitchen and put one or both feet on the cart and use my abdomen and hips to move it side to side. That was it for a while. I was able to use a stationary bike before I could walk.

As for the physio at rehab - the therapists should really know best what he should be working on but if you and/or feels as though he is not getting what he needs then look elsewhere. It is really important that he feel empowered during his therapy. I had to change myself because my therapist didn't make me work as hard as I felt I should be or could be. He will instinctually know what his limits are, or at least that is my own experience.

I have all the records from my physical therapy treatments, if you want specifics I can make note of what exercises I was doing at what point for you. Keep in mind that everyone's injuries are different and we all seem to recover at different speeds. I may have had less damage than your boyfriend has.

Also, when he gets into physical therapy try to find him one with a pool. The water makes the exercises easier and it also helps ease the pain. If you can't find one in your area, check out your local gyms or search for a Y that has one and see if they have handicap access to the pool. You may find that, depending on your financial situation, finding an accessible pool on your own is much less expensive.