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Thread: C5 injury, 3 weeks out

  1. #31
    Thanks KLD,

    I'm not surprised at your response to the sneezing question. I was pretty sure it might not mean anything, so that's not a huge letdown.

    The one pressure ulcer he has is healing very nicely according to the doctor, good news there.

    He has great range of motion in his shoulders; in fact, he is actually moving his wrists back and forth now, so the arms are good. His hands still aren't there yet, but hopefully he will soon get them back.

    Thanks for answering me so quickly; I really appreciate it.

  2. #32
    Here is an update:

    He has been at Frazier for a week now. The vent is turned off, and he is breathing just fine on his own. He is eating really well; the feeding tube is still in, but apparently only for a few meds they are still administering. He can talk now, and it's a great thing to hear his voice. Mentally, I think he is having some trouble adjusting to the idea of what has happened. They measured him for a motorized chair, and I think that really affected him. He also saw himself for the first time in a mirror since this all happened, and that was a major blow. The halo is also off.

    Now, some questions for all you experts out there who have been through this. He has regained some wrist control. He still says he has no feeling really from the waist down, but yesterday, he knew his feet weren't positioned right and asked for them to be moved. He also said his hips were crooked in his chair when they put him back in it after therapy. Would he be able to tell these things if there was no sensation at all? Also, and I hate to ask this but I want to get some feedback, This injury is now two months old. If he were going to get anything back, should it be happening by now, or is it still way too early to tell? We want to hope, but it seems reality is starting to set in. We also tell ourselves it's only been a week of rehab, but we're also afraid if they don't see improvement they won't keep him.

    I appreciate any feedback from all of you. Everyone has been great.

  3. #33
    Casper, two months is very early on in the process of recovery and it sounds like he has already made great progress. I was told to expect improvements for 6 months to one year, and perhaps even five years from the time of the injury.

  4. #34
    Senior Member JeffH's Avatar
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    Quote Originally Posted by CASPER
    Here is an update:

    Mentally, I think he is having some trouble adjusting to the idea of what has happened.
    Yeah it takes awhile. Patience, faith, and hope is key.

    Quote Originally Posted by CASPER
    Would he be able to tell these things if there was no sensation at all?
    Sounds like a good sign to me. In the beginning return can be so subtle that nobody can be sure if it's real or not. But it's gotta start somewhere, why not with what could be a unconfirmable feeling.


    Quote Originally Posted by CASPER
    If he were going to get anything back, should it be happening by now, or is it still way too early to tell? We want to hope, but it seems reality is starting to set in. We also tell ourselves it's only been a week of rehab, but we're also afraid if they don't see improvement they won't keep him.
    Well reality isn't very comfortable some times but anybody that puts a time window on a recovery period just don't know.

    It'll be three years for me this January. Return started very slowly but has continued progressively.
    These days I seem to be improving faster and faster (well, less slowly).

    It's important to note that any return makes a difference in how difficult it is to get through the day.

    And don't forget that his body is still healing and that it takes awhile. I felt like shit for a year and a half before the good days began to outnumber the bad.

    A week, heck give it a year or two before you even think about discontinuing rehab.
    Make the PT's document any and every improvement to keep the insurance on your side.

    Good luck.
    Jeff
    Doh!

  5. #35
    I know how you feel. My son had a C5 injury July 14. He has had feeling all along. We went through the pneumonia and fever as you did. We went to rehab yesterday and they said he had a fever then and we were sent back to the hospital. They told us we would get back to Spain Rehab on Wednesday. Just keep the faith. It has helped me reading the responses to your questions also.

  6. #36
    Hey guys,

    Another question for all of you. It seems that the therapists aren't working with his legs much at all. They are working mostly with his arms and hands. Should we be concerned about that, or is it normal to start out slowly and build up to the legs? I guess I just want to make sure he's getting all the benefit out of this that he can because I don't know how long they will keep him.

  7. #37
    First, feel free to talk with the therapists directly and ask them about their plans.

    Every patient has "goals" that the therapists are focused on each week, that they are required to assess and document for insurance purposes. Often, your time in rehab is limited by whether or not you are making progress - achieving the "goals" - that your therapists have made for you, in a timely manner. The difficult thing is that it is not always clear what the goals are, and how much time you have to "achieve" them. And often the goals are influenced by your insurance company (or whomever is paying the bills) - ie. what can this patient achieve so that they can improve their level of independence and function so that they can be discharged from the hospital as soon as possible?

    So often these goals are useful - to be able to breathe on your own, swallow/eat, achieve some independence with eating/dressing/self care, to be able to use a wheelchair, to be able to transfer yourself into a wheelchair etc..... But notice that they are all very practical/functional. But often your goals are bigger..... to move your hands, to move your legs, to get as strong as possible, to be able to pee on your own, to feel your feet, to stand, to walk, to get back to as normal as possible!!!! Of course, these are great goals and you have to keep them and work towards them constantly.

    But it is likely that there is only a limited number of hours that the therapists will work with him each day (often limited by his tolerance/fatigue and by his insurance coverage and by their available therapist time). So they can't work on everything. So they focus on what they must to satisfy the goals, and they put the most effort into what they feel will be the highest yield.

    So it can be very frustrating for family, when they see legs that are not moving at all and you clearly know those legs need a lot of help........ But the therapists see arms/hands that are "waking" up.... and if they can work on those arms and make them stronger, soon he will be able to eat on his own, dress himself, transfer himself.... all good things...... USING these arms/hands. And leg strength isn't required to achieve those goals.

    Remember - it is still very very early in your daughter's boyfriend's (his name?) recovery process, and she should tell him every day that he will get better. It will just take time. He has to fight fight fight and push push push everyday as much as he can with his therapy. He will recover more function, and it is becoming more and more clear that while some recovery will occur spontaneously regardless of your efforts at therapy/exercise, the more you work/exercise the more the potential for strengthening and further improvement in function. It takes many months... even many years to achieve your maximal neurologic recovery. We don't understand very well how/why the spinal cord recovers after injury and while improved/recovered function soon after injury is a great thing and is associated with a better prognosis, many many people regain very significant function many months/years later.

    Try to do everything you can to keep him in rehab as long as possible, as this is the most concentrated, experienced therapy he will ever receive.

    If therapists are not focusing on his legs, then ask them to teach you/your daughter the "range of motion" exercises and stretches that should be done every day to keep them supple. Every day your daughter/his family should ask him to try to move his hands/fingers/legs/toes. Stare at them. Try to move them. Every day. Suddenly, one day.... chances are very good that something will move that didn't before. So tell him to move it again. And again. 10 times if possible. If he can move it 10 times in a row, then take a break and move it 10 times more. Tell the therapists about every new change you notice, and ask them what you can do to help with therapy.

    Encourage him like crazy. Tell him that it will be very hard, but things will get better. But he has to keep fighting. Never give up.

    So to start with - ask his therapists what his goals are this week, and start helping him work on those too.
    Last edited by hlh; 09-19-2008 at 04:45 PM.

  8. #38
    Thankk you so VERY, VERY, VERY much for that response. That does make us see things in a very different light, and makes complete sense when you put it in the words you did. You're right; we want to see maximum improvement NOW, but we are realistic about that happening. I guess we just all go into a panic inside and are afraid that the doctors and therapists just don't see any reason to work with his legs because they don't see any point to it. I don't want him to give up, and I'm afraid he will because they aren't doing any lower body work. You have made my daughter and I feel much better about this process, and we are truly grateful for you taking the time to respond.

    We appreciate anybody sharing their experiences with us. This thing has been a nightmare. Thanks to all of you, we know that we are not alone in the fear and frustration.

  9. #39
    I used to lay in bed in rehab, and try to move something. Try so hard I'd grunt like an Olympic weightlifter. But it worked, as toe by toe and muscle fibers one by one began firing. My therapists would be ticked off, b/c it was exhausting and I'd be unable to duplicate it. But I kept trying until one day i could do it repeatedly, on command. This may not work for him but if he doesn't try, he'll never know.

    I believe that if you can fire it, you can strengthen it. If he feels little fibers that he can twitch but no outsider can detect, they are quite likely real. It's an enormous job to strengthen them, well worth the effort. I was an exception but I could sort-of walk within a year of rehab.

  10. #40
    You're very welcome.

    I understand exactly how you feel. I often felt the same way. And I often feel the same way even now!

    But still, you are right to be vigilant. Because no one takes care of your family (and close friends) quite as well as you probably would yourself.... or wants as much for them as you do yourself. No one.

    So when we noticed that my father was not getting therapy that we knew in our hearts that he needed and could tolerate, we asked for more! And when the therapists saw that we were serious, and that my dad was not ready to give up, they pushed him harder too. And whenever I read about anything that could possible help him... from electrical stimulation to pool therapy to body weight assisted treadmill training I asked if his therapists could do it for him. And honestly, he got a lot more opportunities because of our pushing, although it still never seemed like enough. And change never seems fast enough.... Anyway, so keep asking questions, encourage your daughter to be present and participate with his therapy/therapists whenever possible - and to learn how to do his stretches and exercises with him herself - and continue to push her boyfriend to work hard and never give up.

    Encouragement is key. This will be a tumultuous ride. He (and your daughter...) will have good and bad days, and sometimes the bad ones will outnumber the good. There were days my father wanted to give up, when he cried, when he said he wished he had died when he was run over by that taxi..... Sometimes there is nothing you can do to help, to make him feel better.... But you can be there. Just being there, to show your support, will mean so much....

    Meanwhile, remember that he must be healthy enough in all aspects to have the energy to do his therapy and recover. So start with the basics.

    Encourage him to eat eat eat - he needs every calorie now and get protein into him. Make sure he is on a multivitamin and calcium/vitamin D. If he has a pressure sore that is healing protein is very beneficial and ask the nutritionist if he is getting adequate amounts of vitamins A,C, E and zinc. And very very importantly..... make sure his skin is getting checked religiously every day - at least twice a day... so that he does not develop any more pressure sores. Pressure sores take a long time to heal, can lead to awful complications, and will inhibit rehab. So make sure the nursing staff is turning him every two hours at night, and that he is doing pressure shifts every 20-30 minutes if he is in a power chair so that he is not sitting in one position too long. His feet should be placed in special boots at night that keep his feet flexed and elevate his heels so that pressure isn't on them overnight. Ask the nurses/therapists to explain to you/his family how to monitor and protect his skin. Unfortunately, it is very common that patients develop pressure sores IN THE HOSPITAL and in rehab from inadequate care and this is utterly inexcuseable. So make sure everyone learns about this now.

    I suspect there are some materials that the rehab center gave you/his family regarding spinal cord injury. Try to read over them, to learn as much as you can. And then ask questions. If you can find a nurse/resident/doctor to help answer your questions then lucky lucky you. If not, you can come here.

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