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    need help

    Hi,

    My dad suffered a spinal cord injury c6 c7 incomplete a month ago. He has good arm coordination and strengh, but no finger movement. He does have sensation in most of his fingers though. No movement and very limited sensation from the chest down. At a month post injury, is it possible to see more return? The doctors were very hopeful at first, but they don't appear that way now.

    Also I was wondering if anyone could shed some light on why he wasn't given Prednisone at the time of his injury? Finally, he is only getting 1 hour of pt and 1 hour of ot a day. I don't think this is enough, does anyone have some insight....how much and what kind of physio should he be receiving? He is at a rehabiliation center but it is not a specialized spinal cord injury center, does anyone know if there are any specialized centers in Canada? Any advice would be great right now, need some kind of hope.

    Thanks
    Kathy

    #2
    G F Strong in Vancouver is the place to be.

    ttp://www.vch.ca/gfstrong/

    Comment


      #3
      Hi, and welcome. I'm sorry about your dad. Everybody new to SCI should read the article linked below. It's probably best to print it for the whole family. It will answer a lot of questions.


      http:///index.php?page=viewarticle&a...3@AcuteSCI.htm

      You didn't say how your dad was injured, or what his age is. Any other injuries? Is he mentally OK? (No brain injuries, I mean.) How is the family support? Is he married?

      It's not uncommon AT ALL for people to regain some function for up to 2 years post-SCI. The first 6 months seem to be the fastest. When the spinal cord is injured it swells (this is called spinal shock). As the swelling decreases some function also comes back. Tell him to keep trying to move, even when he isn't in formal therapy.

      I don't know why he didn't get methylprednisolone...but what's done is done, no sense agonizing over it now.

      I would move heaven and earth to get him into a SCI-specific rehab. I'm not Canadian but have heard good thins about Strong. Plus, it's in Vancouver and gives you an excuse to visit there! (I'm dying to visit Vancouver.)

      I'll let the Canadians jump in now. You've done well finding us so soon. Be sure and read the article I linked, it's important.

      Oh, and WATCH HIS SKIN. He needs to be turning at least every 2 hours. Don't trust the nursing staff. At his level he should be able to learn to roll himself, I think. Tell him this is crucial. The skin sores set us back faster than anything and we're most vulnerable in the beginning.

      Ask any questions, any time. We always try to help.

      Good luck!
      Blog:
      Does This Wheelchair Make My Ass Look Fat?

      Comment


        #4
        Hi,

        Thanks for your swift response. My dad suffered no other injuries, cognitivily is is 100%. He was in a car accident. He has lots of family support, (still married to my mom )there is someone with him all the time at the rehab hosiptal, except for the night time. It is a very emotional time for him right now, he is 42 and very healthy post injury.

        Thanks for the link, I have read it already, it is very useful. I am checking into the rehab center in BC now. We are ensuring that he gets moved every 2 hours and we do exercises with him as well...stretching etc..

        I just don't feel like he is getting the proper rehab treatment, he is getting medication to help him sleep as well as anti depressants because of his psychological state- I am questioning if this medication will interfere with his recovery?? At one month post injury it seems like the medical staff are not concerned with helping him regain any function- they only work with what he already has..is this normal? Anymore input would be great.

        Thank you so much

        Kathy

        Comment


          #5
          Kathy;

          Thanks for the further details. Your dad is a young man and should rehab well when a better facility is found. It sounds like the hospital you are in just does not have the experience to understand the opportunities an SCI dedicated institution can provide.

          As to recovery, in particular his hands, I can recount the situation of my son whose injury was at C7. Early on he had movement and sensation in his right hand only. It was nearly six months before our hopes were realized for his left hand. He could not open the fingers at all until many months had passed. Now he types with both hands. The right is still stronger but the left is working.

          The acute stage he is in at the moment is the ugliest part of the process. There are so many unknowns. The most important thing about this stage is his support group. His mind is just a dust devil of doubt and regret. Be there for him and stay hopeful for improvement.

          John
          "Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence." Lin Yutang

          Comment


            #6
            I am a T6 injured at 39. I am 42 now. Pray that there will be some recovery, at C6-7 he is just at the level where he may soon get some finger control back. I was never a fan of anti-depressants, I would rather be very awake and aware of what was happening around me eventhough I understand that every injury and the situations around it are different. He and his family must read and learn about the injury to prevent skin breakdown, pulmonary and other complications can be avoided the sooner he is able to sit and be transfered to a wheelchair. Read and ask questions. Many here have gone through what your dad is going through, and the nurses and doctors on CC are the most knowledgeable on this field that I have found since my injury. My best advice is to ask, any doubt just ask. And get him hooked on to carecure soon.

            Best of luck.
            T6 complete (or so I think), SCI since September 21, 2003

            Comment


              #7
              Kathy,

              I sorry to here about your father injury. My father is a c6/c7 complete it has been a very emotinal time for all involeved with his accident but we've taken it day by day. I know My mom has been there and is my father care giver and it takes alot out of her. best of luck with finding all you need this website has been great for me and my family.

              Comment


                #8
                Hi everyone,

                Thanks for your responses, I was wondering what to expect in rehab? For example, should rehab focus on working with all of the body? Is the approach "we won't work with it till it moves" normal for rehab. They said my dad won't benefit from FES exercise, like that of the FES bike, unless he gains some kind of movement in his legs. They have not tried to stand him up yet, but he does spend many hours in the chair. I am just wondering if this approach can be expected of all rehab centers, or maybe it is just a lack of knowlegde in the rehab hosiptal my dad is at. My mom asks alot of questions and has done alot of research into different types of treatments, however the doctors don't seem to think it will be useful to my dad. Would it be benefical to move him to another rehab, will specialized SCI centers, take this same approach? How many hours of pt should he be getting in one day?

                thanks so much
                Kathy

                Comment


                  #9
                  I forgot to mention that the doctors are thinking of giving him medication for spasms...he has began to have them recently....could this medication interfer with him regaining function? It seems a bit soon to be medicating him for spasms? Any advice??

                  Kathy

                  Comment


                    #10
                    Originally posted by Kathy11
                    Is the approach "we won't work with it till it moves" normal for rehab. They said my dad won't benefit from FES exercise, like that of the FES bike, unless he gains some kind of movement in his legs. ....... he does spend many hours in the chair. I am just wondering if this approach can be expected of all rehab centers, .................. Would it be benefical to move him to another rehab, will specialized SCI centers, take this same approach? How many hours of pt should he be getting in one day?
                    Kathy,
                    As a father of a recent injury to my son (C-5 incomplete), I've found that this first question has a bit of controversy in the rehab field. My son's rehab is concentrated on just what moves and I had the same question as you.
                    It seems that there are a few doctors that feel that the FES and other treatments should be used on areas that dont move....yet. They feel that the stimulation can activate movement, eventually. Others feel that this is a waste of time and energy and want to zero in on making what does work (move) better.
                    Chris Reeve's doc (McDonald) got a bit of medical success with the theory and therapy that wants to make movement where there is none, but is a good candidate area to try. But he hasn't published his therapies and findings to the medical society, yet- and others disbelieve his claims saying he hasn't had enough success to make them believe in his therapies or theories. (Johns Hopkins beieves it, and brought him from St. Louis to Baltimore to use his methods on the pediatric & adult patients at thier Kennedy-Kreiger Institute)
                    At least, that's the way I think I've interpreted what I've been able
                    to fiind out. (We're in Balto. at another SCI hospital, & want my son to do his outpatient rehab at Kennedy-Kreiger if he can get in-there's a waiting list. They seem to have a brighter outlook on the possibilities of regaining function than where he is now.)

                    I do believe that it will be very important to your dad's recovery and rehab- to be at a hospital that specializes in SCI. This is a must!

                    My son does 3 hours of rehab a day.
                    One hour O/T in the a.m. & one hour each of O/T & P/T in the afternoon.

                    That's a very strenuous schedule for him, being a quad - and it takes so much time for him to do everything that we take for granted. Eating, dressing, brushing teeth, washing, time for breakfast, time for lunch, getting 'cathed' every 4 hours, getting to and from the therapy sessions back to his room, etc.
                    But I can say that after just over one month at the rehab hospital (He spent the first month 99% paralyzed, intubated & on a vent in CCU & ICU), he has regained his speech (trache removed and breathing on his own), a lot of arm movement (he can operate a power whellchair with a joystick), some hand movement, and just yesterday he discovered in thereapy that he can move his legs, slightly - with the 'skate' and leg board.
                    If he shows enough progress, they'll delay his discharge date and work more on additional therapies, for anywhere from a week - to a month, extra.
                    They too operate on the principle that they only concentrate on working with what works. (That's why we're trying for Kennedy-Kreiger outpatient- rather than the outpatient rehab at the hospital he is now in)
                    That's been my experience so far, from a father's perspective.
                    Stay with this site. Read what they suggest.
                    This site and the forums have been a lifesaver, literally-
                    for both me & my son.
                    Bob B
                    SCI - Parent

                    Comment


                      #11
                      a little good news

                      Today my dad showed movement in his fingers! Although it was minimal and it took alot of effort the physiotherapist seen it and now they are going to start hooking his hands up to some kind of electrodes or something. I am guessing electron stimulation for his hands.

                      Thank you all so much for your comments... It really helps speaking with people that have experience in what I am my family are going through. My mom asked the doctor about the FES bike and he said that it is not effective unless there are some signs of movement. He even mentioned that Christopher Reeves used this technology and it did nothing for him....although this is not what I have read...after 7 years and he began moving a finger, it could have played a role. Plus every SCI is different. Tomorrow my dad is having xrays to see how his fusion is healing, I guess to make sure everything is ok. Then he can start weight training.

                      thanks
                      Kathy

                      Comment


                        #12
                        It takes more effort than you can even imagine. Moving one finger for him is like moving a truck, for you. It will tire him a lot, he won't be able to repeat many times, at first. But this is very good news. Tell him to keep pushing!
                        Blog:
                        Does This Wheelchair Make My Ass Look Fat?

                        Comment


                          #13
                          Originally posted by Kathy11
                          Today my dad showed movement in his fingers! Although it was minimal and it took alot of effort the physiotherapist seen it and now they are going to start hooking his hands up to some kind of electrodes or something. I am guessing electron stimulation for his hands......
                          Kathy,

                          Wow, reading this thread brought back many memories for me - sounds like the exact situation I was in 2 years ago. For approx 1.5 months after my accident, I had no fine motor movement in my right hand. Then out of no where, I saw my right thumb move a little.

                          I Used FES (functional electric stim), ice baths for my hand (they said it stimulates nerves), & requested everything I could get my hands on to work them every waking hour. It was extremely slow progress (sometimes very frustrating) but I now can use that hand. It's still impaired but my ability to use it gives me independence!!! I recently got to the point that I can hold a regular pen & right with it, use a remote, etc...

                          I don't know if this will make sense to your dad, but I always thought - give me a small sign of hope & I'm running with it. I really was concerned over my hand & when I saw the thumb move - at first, I couldn't believe it.

                          It's been a long (sometime's frustrating) road with my hand's development but tell your dad not to give up. Tell him to try everything (see what works & what doesn't - & try it again) & don't take NO from any of the rehab staff or doctors (my experience is that they have very limited knowledge when it comes to future recovery). He's injury is still so new & he has hugh potential - don't let anyone tell him otherwise.

                          I'm reading this to my sister because she was there one afternoon when my therapist was trying to work my hand with the FES but it didn't seem to be working (felt like I wasn't going anyway). I was so frustrated that I started crying & of course, got everyone else crying too. My therapist went home that night & spent hours reviewing electrode placement etc, because she knew how much I wanted it. Looking back over the last 2 years, I've really learned the importance of hope & perseverance. I might not get everything I want (walking.....yet! ), but give me some hope (a little finger movement) & I'm going to try everything I can to get it back (some people on this forum aren't even fortunate to have that). Please let him know that others have been there & he isn't alone.

                          Sorry if I rambled but your post hit home for me. Keep us updated & know you guys are in our thoughts.....

                          Shawn
                          Shawn (www.shawnoconnell.com)

                          Remember - Dare to Dream

                          Comment


                            #14
                            Thank you to everyone for your response, I am very glad that there is such a helpful support group on this website....

                            Bob, I was wondering what the "skate" and leg board is? That is very good news about your son! He seems to be coming a long way.

                            Thank you to all for your support, it is good to beable to talk with people who have positive attitudes! I will keep you updated, tomorrow the FES starts with his hands, your stories brings us much hope.

                            Thank you for your story, Shawn, my dad has the same philosophy as you- it if shows any improvement he is ready to work very hard. It is undoubtedly a slow process though, which often leds to him to frustration. I hope tomorrow will be a very good day for him, right now he sure could use it. Thanks again

                            Kathy

                            Comment


                              #15
                              Kathy, I'm an incomplete C6-7 and 44yrs old. I was hurt 3yrs and 8 mo. ago. My advice would be get him into the pool as soon as the stitches heal. My attitude is move what you can't move.

                              With an incomplete injury you just never know, but I can say that I get more return everyday and that includes today! I workout everyday either swimming, hand biking, stationary bike or some other activity that moves you.

                              Ask him to make a habit out of thinking about the movements that are happenning even if he is not the one making them move. Linking the thought to the movement to combat learned non-use is the hardest part! For me, many areas took years before I could feel the thought!

                              Good luck. Pat

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