New member today, have questions

[Brighter days]

Hello,

Sorry if this is a repeat - I tried to post my original message but it didn't seem to work.

My husband, 28 yrs. old, had a diving accident early last month and is C5/C6 incomplete. It was only this week that I learned he was classifed as incomplete - I had presumed he was complete until now.

My main priority has been towards trying to get him the best medical treatment (unfortunately didn't get on clinical trial) and keeping his spirits up with constant support from friends and family.

Now I'm trying to digest all the info. about SCI that I've read on the web, journal articles and from doctors, nurses and medical professionals. My main question is how others have handled negative prognoses.

I had been bracing myself for no recovery, but although there was no movement for the first 2 weeks he now has strong biceps, deltoids and some movement in triceps, wrist flexors and extensors and some trunk muscles as well. He can also lift both arms above his head when in bed. Since it's just over 1 month since the fusion surgery, this fills me with hope but it's hard to read and hear negative outlooks for recovery based on his injury level and MRIs. I realize that doctors don't want to raise false hopes, but have others dealt with something similar?

Also, he has pins and needles feelings constantly in his arms, and sometimes in his legs, and his hands and feet feel numb. Sound familiar? I read that this could cause problems/pain later on, but has anyone found this to be a "good" sign for recovery? Also, the leg movements are getting more and more active everyday when someone touches him or he is transferred, and he can feel twitching when this happens. Any ideas if this is what is just referred to as spasticity or if it can be a sign of improvement?

Obviously, we are praying for as much recovery as possible but we are trying to get ready for whatever the future holds for us. He is amazing and has such great spirit. Still, any input from people who have been in similar situations would be appreciated.

Thank you.

[betheny]

For this early, experience tells me he's doing very well. Not for 100% recovery-although every sci is different, few of us get that imo. But for a great deal of return that he can maximize with time and effort.

You don't mention hand function. That is probably the single most important thing (aside from lungs) that will determine independence and return to former lifestyle.

Can he voluntarily twitch a toe, a hamstring, a quadricep-anything? He needs to be trying that all the nights he lays there to scared to sleep.

Right now he's in spinal shock. He'll probably be another 4 months or so coming out of it. When the swelling goes down you'll have a better idea of where you stand. Meanwhile there's a lot of work to be done and done now. Plan for the worst-his level of function right now-then everything else will be gravy.

He should be in the VERY BEST REHAB you can access right now. No excuses about rehab. It determines a great deal of your fate post-sci. Can't stress that enough.

I'm no doctor, or nurse either. But I have been exactly where he is. c5-6 incomplete, 5 yrs. post I can walk a quarter mile. Not everybody gets that much return but by your description he sounds very incomplete. I've seen quite a few like me by now so I think you can trust my input. The only way he'll know if that level of return is possible is to try hard right now. It's a lot of work.

I'm really sorry the two of you have to go through this. The fact that you're doing your homework is a positive sign. You'll know more than the doctors quite soon. Take that negative stuff for what it is...an opinion offered with good intentions and a great fear of legal liability.

Ask us anything, that's why we're here. When he's ready, get him in here too. This is probably the steepest learning curve either of you'll ever see. I think that's how we can help. There's really no need to learn everything the hard way if there's a piece of info here to offer a slightly easier path.

Good luck to you both-

Betheny

P.S. Read this aticle by Dr. Young. It answers many many questions.

http://carecure.org/index.php?page=v...3@AcuteSCI.htm

[Brighter days]

Betheny,

Thank you for your response - it's encouraging to know someone with my husband's injury level has had a positive recovery, let alone your amazing recovery. I realize that this is very rare, but it's good to know that he's progressing well.

Hand function. Yes, that's what we're praying for most. When he really concentrated a couple of times he moved his fingers, or at least we thought he did and he said he felt it. However, he hasn't been able to do it since and thinks now it may have been wrist function. His toes, also, seemed to move one time when he tried hard but this also could have been a spasm. He says it takes a lot of energy to try -- but I'll tell him to keep practicing all the time. No movement elsewhere.

We are in an excellent rehab, and hope that with the intensive OT and PT that his recovery will continue.

Thanks again, and I'll read that article tonight.

[RehabRhino]

Your story sounds very familiar. Your husband is at exactly the same stage I was about eight months ago. It gets a lot better believe me, but as Betheny said, it is hard work.



I would say that your hope at this stage is a good thing, but you also sound realistic. From what you say, I would think that your husband is still going through spinal shock. The pins and needles stayed with me for weeks and weeks, but as they faded away I got a lot of sensation returned below the level of my injury, C5/6 – also from diving!



When I first started getting spasms I was convinced that this meant my arms and legs were going to move. For months, they were nothing but spasms, but recently - about eight months post - these have started to slowly turn into controllable finger movements.



I also have some trunk muscles which are invaluable in improving my balance and ability to transfer. I have very little tricep muscles but they do twitch and kick in. My shoulders and biceps are very strong.



If your husband feels strong and is up for the challenge I would urge him not to accept a power chair and to try pushing a manual chair. This is not to criticise anyone in a power chair, simply that the strength I have now which allows me to be far more independent was largely built by forcing myself to push a chair around the rehab hospital. It wasn't easy, I used to be able to go about 5 feet before I gave up, a week ago I pushed my heavy manual chair around a shopping mall for three hours.



I am convinced that continuing to use what muscles I have left in this way has helped with some of the minor return I'm getting. I wouldn't suggest you husband does this if he suffers significant shoulder pain. You only get one set and they are worth keeping because he is going to use them for a lot from now on.



Hopefully, he can be fully independent. I am still learning but I am able to do most things on my own and we are currently adapting our house in order to enable me to do a lot more.



And you are so important to him right now. Things could be a lot worse, even though it might not feel like it, so you need to encourage him at every hurdle. There is nothing wrong with showing your feelings and getting upset once in awhile but don't let him dwell on it.



Please let us know how he is getting on and don't hesitate to ask any more questions.

[Shaun]

Its only been a month,theres still a lot of very positive things that could happen.Some people still get return of function of some kind years after,but while its good to have hope,also be ready to move forward with what he has should that be all...Good luck to the both of you

[betheny]

RR-
Good advice about the power chair. After SCI you're so weak, then over time you forget. The elevator at rehab looked a thousand miles away. My upper body must be 300 times that strong now. Mall in my manual chair, no problem.

[JonnyC]

Hi there....Sorry to hear about your husband. But from what you have said, I personally think it sounds quite promising.

I was in a VERY simular situation a couple of years ago. Please take 15 minutes to read "My Story" below and e-mail me if you have ANY questions what so ever, I would be pleased to answer as best I can. Good Luck!!!

jon-paul.crooks@ntlworld.com

http://www.spinal.co.uk/community/de...d=351&catid=92

[RehabRhino]

Originally Posted by betheny

After SCI you're so weak.

Unbelievably so. In six weeks (in bed with halo traction screwed into skull) I went from seriously fit to unable to do more than 5 reps with a juice carton!!!!!!

When they first put me in a chair my only exercise was trying to get to PT on time - 20-25 mins at start of rehab, one minute journey by the end........7 months later

[rickhemi]

These are all very good posts, and I don't have much to add. But just to say, look for the little things now, because they usually become BIG things later.

I can remember when my daughter was first injured. A few days after injury, the docs would be doing their little 'tickle' test, and while you couldn't see Sarah moving anything in her legs, she could 'feel' her muscle moving under her left kneecap. A few days later, she would tell you where to put your hand, and a faint twitch is all you could feel, if you close your eyes and concentrate.

13.5 months post, Sarah is now walking 80% of the time in school, using a walker.

Little things become BIG things, indeed.

Rick

[Brighter days]

Thanks everyone, hearing from people who have gone through this is such a lift. I have renewed zeal to go back to rehab and tell my husband to work as hard as he can, and I'll suggest the idea of the manual chair when we get to that stage. I know it must be hard for him to have me continually hovering and watching for any signs of movement, or asking him always if he feels anything inside. I try to keep this to a minimum, but it's hard. He starts a new schedule of 4 hours of PT and OT a day which I tell him is great for it being just over one month since surgery. He's also trying harder to will movement in fingers and toes -- when he does this with his fingers they shake a little, though again we both aren't sure if that's due to the wrist involvement. All we can do is keep trying. I know I'll have more posts in the future, thanks again.