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Thread: New sci C5-C6, pls help with questions

  1. #11
    His sensation is a very good sign. If he has feeling at his anus, he may be considered an ASIA B injury. It is also good that he is off the ventilator.

    People with SCI, esp. in the upper thoracic or cervical levels, are subject to decreased GI system motility. True gastroparesis is rare, but stomach emptying can be slowed. A medication called Reglan is often used to help with this temporarily (as this usually improves somewhat with time). True ileus, where the entire GI system motility shuts down is a temporary condition that is usually self limiting, but if it goes more than 3-4 days alterantive IV feeding (TPN = total parenteral nutrition) should be considered as he is also in a state of catabolism where his need for calories and protein are much higher than normal.

    Now that he is ready to leave the ICU, he needs to have plans in place to go to an appropriate specialty SCI acute inpatient rehabilitation hospital. Has this been discussed or arranged? The sooner this happens, the better.

    (KLD)

  2. #12
    Thanks for your reply. They started using medication to help digesting, however they didnt prescribe Reglan yet, i told my mum to speak to docs about it. He is also having severe pain in his shoulders and doesnt let any one to turn him for the last two days. Mum was trying to convince him that he needs to turn but he is not listening. We are afraid of bed sours but dont know what to do. Do you know if shoulder pain is normal in his situation (C5-C6) as he seems to move his shoulders himself time to time. Should we still move him despite him saying no? Should we address it with other docs? His ICU docs do not care much that he is not being turned in bed.

    On accute rehab - his docs saying he will stay in this centre for some time but in normal ward. They have PT and he is already getting some PT and gentle massage. Unfortunately, he is in Kazakhstan, and this centre is the biggest one in the country. They dont have anything specific to SCI. There are some centres in Moscow which we plan to take him to but they are more of an active rehab which he is not ready for yet as docs say. Thanks so much for helping out with questions.

  3. #13
    The pain is very common, and unless he gets medications and also works through the pain with range of motion exercises and therapy, it will get work due to adhesive capsulitis. It is critical that he do this, as his shoulder movement right now is the best function he has. If he gets a frozen shoulder or elbows, he will loose that function. Medications such as gabapentin (Neurontin) or Lyrica are especially helpful for nerve root pain like this.

    Similarly, he MUST turn. A pressure ulcer now will prevent him from going on to a good acute rehab program, and will impair his skin strength for the rest of his life. Is he on a specialty mattress yet? Even that does not do enough that turning is still not needed.

    (KLD)

  4. #14
    Adema, I am so sorry you needed to find us here but glad that you did. I hope and pray that your brother will listen to you and receive the help that you offer. That he will trust you, that he will understand that you only want what is best for him. That the pain caused by turning every two hours and moving his shoulders will be helpful and good for him in the long term.

    I have friends who live in Almaty, Kazakhstan. I understand a bit about your situation there, you and your family will be in my thoughts and prayers.
    Last edited by Still Learning; 06-06-2010 at 06:03 PM.
    The IceDragon Avatar best represents my constant Freezing yet Burning Pain...not to mention all the other sensations that come with neuro pain

  5. #15
    Hi Adema,

    I'm very sorry you guys are going through this right now. I had a diving accident which resulted in a c5/6 injury in a foreign country as well, so I can relate.

    It was confusing at first figuring out exactly what my injury had affected. The diagram below will help you understand what muscles he can still fully use and the ones that may be weak [c6 level which is wrist extension]. Also, if he begins definitively using muscles below his injury level this is a great sign!



    Push him hard in the next few months towards recovery and independence. These coming months are key, not only to his physical recovery, but to his state of mind.

    I hope his complications improve very soon. Take care and keep us posted.

  6. #16
    Adema, welcome. I was struck by your question of whether to have your brother turned against his wishes. This is such a hard thing to answer. Of course it would be better to have his cooperation as I can't even imagine a bunch of people coming to a new sci patient and forcibly turning him while being asked (screamed at?, begged?) not to. But everyone is right that he will suffer much more in the long run if he doesn't do it. It's really hard to respect someone's right to bodily autonomy when they can no longer take care of themselves and don't really know what's happening to them. Just thinking about it and remembering that time in my own life makes me want to cry. So I'll just echo the advice of others to try and give him as much info as he can handle to convince him of what needs to be done. And hopefully some meds will alleviate the pain and calm him a little.

    So sorry you're going through this. It does eventually get better.

  7. #17
    Thanks so much for your replies! It made me feel emotional seeing how everyone relates to each other on this site. Thanks for being here and helping each other. I found this site an invaluable resource, learnt so much from here.

    Got his Low Air Loss mattress from Holland today (genadyne make), will send it by cargo tomorrow to Kazakhstan. Mum says they were turning him a little today, he is quietly agreeing but have mood swings - from happy to grumpy, and they also prescribed some sort of pain-releaving cream for his shoulders which he always asks to apply (seems helping). He was moved from ICU to ward today, this made him happy, he even got TV in his room (a big thing for a hospital in Kazakhstan) and mum constantly there now day and night. On a negative side, no qualified medical stuff in nirmal ward, they even didnt know how to do suctioning today, and also he had a sudden temperature jump and stomach was really bloaten, so they had to run to ICU to get ICU staff to check and help with stomach. He continues to have digesting issues, so mum wll check if they can do electrostimulation of stomach tomorrow. We live day by day, just hoping things get better.

  8. #18
    My brother is a little better today, was eating a little too, which is very important docs say as he is very weak at the moment and lost lots of weight. Pneumonia seems coming back and docs decided to put him on antibiotics again. He is getting his PT and was turned few times today, even was laying on his left side for 30 mins, although pain was unbearable to start with but he is taking it in well.

  9. #19
    I am glad he is being turned. Thinking of you and your family.

  10. #20
    Hi Adema, I've been thinking about you and your brother. Since your family must provide his meals from home for him while he is in the hospital, and he needs lots of protein for his recovery, but he is having difficulty digesting it. I wonder if this suggestion might help?

    If you are not able to get the medical products like "Ensure," or "Sustecal,"etc...like SCI nurse mentioned earlier, might you be able to find products at a Sporting supply Store or even order online from UK like "High5 Protein Recovery" for example? Marathon runners, cyclist, and weight lifters use products during and after workouts that are easy to digest and can help target different nutrition needs. High Protein drink powders, usually whey protein, can be mixed with milk or water to provide a good boost of calories and protein as a supplement. They also sell eneregy gels but those are usually mostly carbs. Maybe others can jump in and help "brainstorm" some alternative suggestions.

    I hope your brother is able to eat well soon so he can begin to regain his strength.
    The IceDragon Avatar best represents my constant Freezing yet Burning Pain...not to mention all the other sensations that come with neuro pain

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