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C5 injury, 3 weeks out

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    C5 injury, 3 weeks out

    Hi,

    I guess I am just looking for support and hope. My daughters longtime boyfriend suffered a c5 injury 3 weeks ago, and we are on the rollercoaster I guess everyone experiences after this type of injury. At first, he had no feeling at all in his hands or below the waist. In the last couple of days, he is able to feel touch on his legs, and he says he feels like there is glass in his hands. Hopefully that means some sensation is returning, but I don't know if that is a good sign. He has been accepted into Frazier in Louisville, but cannot be transferred at this time because he keeps running a temp anywhere from 101 - 103. He was breathing fine on his own for two weeks, but last weekend his oxygen level dropped and they put him on a ventilator and have now put in a trach. I guess I am just looking to hear from others that have been in this situation as to what are good signs, and what really doesn't mean much . I appreciate any response to lift our spirits. Thanks!

    #2
    welcome , it's a rollercoaster ride all the way. only time will tell as far as recovery. give him support and keep his spirits up. Beth always has the right words.
    oh well

    Comment


      #3
      Does he have biceps and deltoids? Wrist extension? Triceps? Does he have sensation at his anus?

      Where is he now? Are they experienced in vent weaning for persons with SCI? There is some good information on how to do this properly in the clinical practice guideline on respiratory management in SCI. You can download that for from from the CPG links at the top of the Care forum.

      Does he have pneumonia? Do the staff know how to do quad (assisted) coughing and is this being done regularly in addition to chest PT and use of the Vest and Cough-Assist machines?

      Is it definite he is going to Frazier? Have they considered a Model SCI System Center such as Shephard in Atlanta or RIC in Chicago?

      Does he have a decent health insurance? How old is he?

      Is he on a specialty mattress to help prevent pressure ulcers? Getting turned religiously at least every 2 hours? Skin inspection at least every 8 hours? Is someone from the family doing this with the nurses? Pressure ulcers will hold him back much more than this lungs.

      Please ask questions, get this boy's family on-line here too. We can help.

      (KLD)
      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

      Comment


        #4
        Thanks for replying so quickly. He is 21 years old, no insurance. He is being turned every two hours, or more often if he requests it. He has developed a pressure ulcer that did have staph set up, but they say it is looking much better. He can move his arms and sit up, but no hands as of yet. We just hope that Frazier is an excellent facility; the website looks promising. They offer locomotor training and I hope that will be a tool he can use.

        Comment


          #5
          Casper, please check your private messages!

          Comment


            #6
            Can he lift his hand over his head? That means he has triceps, which would be awesome.

            I had that finger pain. Got function back in one hand. It is really searingly painful, or was for me.

            Get him in the best rehab possible!
            Blog:
            Does This Wheelchair Make My Ass Look Fat?

            Comment


              #7
              Update from last night:

              temp still at 101 - 104; doctor says all bloodwork is good, so fever is most likely from the injury, not infection

              he has been put on a percussion bed to help his lungs open up

              Hopefully rehab can get started soon if he can get off the vent and keep his oxygen levels up on his own

              Comment


                #8
                Is his injury complete or incomplete? I am not familiar with the rehab they are sending him to. My fiance was at Shepherd Center in Atlanta- they were WONDERFUL!!! Everyone is right about getting him to a facility such as this and out of the hospital ASAP. The sooner you can, the better off he will be. I strongly believe in an agressive rehab. They had classes for my fiance from about 9 until 4 every day. Pt, OT, treadmill training, wieghts in the gym. Once he started the treadmill training he really progressed very quickly. It has been my experience that hospital PT people are SO busy and really don't have the kind of time to devote to an SCI person. Good luck to your daughter's bf and please keep us posted!

                Comment


                  #9
                  And just one more suggestion- while you all are there- and if you can- exercise his feet and legs. It will help. My fiance is a doctor, and he asked me to flex and extend his feet and exercise his legs every 30 minutes.

                  Comment


                    #10
                    Percussion alone is not enough. All that does is shake the secretions loose. They still need to be coughed out, which requires the quad cough or Cough Assist machine. Insist upon this. They will do it if they know anything about SCI. The fever is likely due to atalectasis and the pneumonia from retained secretions. If the percussion bed is a SportO2 bed by Hill-Rom, watch out. I have seen very serious pressure ulcers caused by this bed.

                    (KLD)
                    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                    Comment


                      #11
                      I am not sure as to whether they have called this injury complete or incomplete; he does have some feeling in his legs now so maybe that means incomplete? This is all so new to us that we don't know all the terms yet. He has been able to lift his hands to his nose, but couldn't bring them back down a couple of weeks ago. He says he keeps feeling like he's falling off the bed. The doctor said that could be a side effect of the morphine, so they are going to stop that because there is not much pain now. If my daughter touches his feet, he has started to jerk them away. i am not sure if that is just a reflex action or something else. He also said that he felt pressure on his lower back like something was behind it, but nothing was. Could that be some kind of sensation trying to return? I appreciate everybodys input. We are just so confused right now.

                      Comment


                        #12
                        Originally posted by CASPER
                        I am not sure as to whether they have called this injury complete or incomplete; he does have some feeling in his legs now so maybe that means incomplete? This is all so new to us that we don't know all the terms yet. He has been able to lift his hands to his nose, but couldn't bring them back down a couple of weeks ago. He says he keeps feeling like he's falling off the bed. The doctor said that could be a side effect of the morphine, so they are going to stop that because there is not much pain now. If my daughter touches his feet, he has started to jerk them away. i am not sure if that is just a reflex action or something else. He also said that he felt pressure on his lower back like something was behind it, but nothing was. Could that be some kind of sensation trying to return? I appreciate everybodys input. We are just so confused right now.
                        CASPER,

                        From your description, it sounds as if he has a C5 or C6 neurological level. The deltoids (that lift the arm from the shoulder) is C4. The biceps (that flex the elbow) is C5. The wrist extensors (that allow the wrist to be held straight) is C6. The triceps (that straighten the elbow) is C7. The neurological level is the lowest intact level. So, depending on whether he can extend his wrist, it sounds as if he has a C5 or C6. The fact that he can bring his hands up to his nose indicates that his biceps are working. If he can hold his hand straight to touch his nose, he may have some C6. However, the fact that the cannot move his arm back down means that he has very weak triceps.

                        Regarding "complete" injury, it is defined by the absence of voluntary movement and conscious perception of sensations below any level of the spinal cord. Please note that his spinal reflexes below the injury site are still active, explaining why his leg pulled away from his daughter touches his leg. He, however, should not be able to feel it. Since the lowest part of his spinal cord innervates the anal region, the absence of sensation and voluntary contraction of the anus is generally the criterion used by doctors to indicate whether he has some level below which he has loss of all sensation and voluntary movement.

                        During the early phase after injury, the presence of sensation below the injury site may or may not be predictive of recovery. However, a majority of people will recover 1-2 segments below the original injury site. So, he should be working on trying to get his wrist extensors and triceps back. These two muscles will make a big difference for his independence. Having the wrist extensors will allow him to operate a computer keyboard. Having triceps will allow him to lock his arm and transfer to and from the wheelchair. Having hand function will allow him to catheterize himself. In general, the segments close to the injury site are the most likely to recover.

                        Finally, I dislike the term "complete" and "incomplete" because many and doctors misinterpret these statements to mean that there is no connection across in the injury site in "complete" injuries. This is not true. Even in people with "complete" injuries, they may have some connections still crossing the injury site... it is just not enough. Of course, being "incomplete" is a good sign and a majority (>90%) of people who are incomplete during the first 48 hours after injury can eventually recover walking.

                        I hope that this is helpful. Please do ask more questions if you don't understand.

                        Wise.

                        Comment


                          #13
                          Originally posted by Wise Young
                          CASPER,

                          From your description, it sounds as if he has a C5 or C6 neurological level. The deltoids (that lift the arm from the shoulder) is C4. The biceps (that flex the elbow) is C5. The wrist extensors (that allow the wrist to be held straight) is C6. The triceps (that straighten the elbow) is C7. The neurological level is the lowest intact level. So, depending on whether he can extend his wrist, it sounds as if he has a C5 or C6. The fact that he can bring his hands up to his nose indicates that his biceps are working. If he can hold his hand straight to touch his nose, he may have some C6. However, the fact that the cannot move his arm back down means that he has very weak triceps.
                          Thank you so much for that explanation. It never made sense to me that my fiance's injury was at C6, but they called it C8 tetraplegia. Now it makes sense.

                          Comment


                            #14
                            Okay, we really don't know what is going on now. Yesterday, he started having some uncontrolled trembling; doctor is going to run a brain scan today to check this out. His fever still is ongoing. Is fever a common side effect of this kind of injury, or can they just not find the answer and won't admit it. He cannot be moved to rehab until these issues are resolved, but he will never get any better until we can get him into therapy. Our frustration level is through the roof, as well as being scared of these other things that are starting to occur. They did put him into a deeply sedated state yesterday to do a deep lung suction; could the trembling afterwards be a side effect of coming out from under the sedation? We just don't know and need answers.

                            Comment


                              #15
                              Originally posted by CASPER
                              Okay, we really don't know what is going on now. Yesterday, he started having some uncontrolled trembling; doctor is going to run a brain scan today to check this out. His fever still is ongoing. Is fever a common side effect of this kind of injury, or can they just not find the answer and won't admit it. He cannot be moved to rehab until these issues are resolved, but he will never get any better until we can get him into therapy. Our frustration level is through the roof, as well as being scared of these other things that are starting to occur. They did put him into a deeply sedated state yesterday to do a deep lung suction; could the trembling afterwards be a side effect of coming out from under the sedation? We just don't know and need answers.
                              Casper- I had a temperature of 101 for over a month after my c4/5 injury. trembling, shivering, shaking could be from many different things. I'm pretty sure those symptoms can be result of a fever.

                              Once he can get his lungs stronger, he will have a better chance of bringing the fever down. His situation parallels my past experience -- I'm sorry. From what I remember the most important thing my family and friends did was to continuing to show support and love. It's unfortunate for so many things to be out of control. Being here, asking questions, and being there for him is incredibly important.

                              Stay strong.

                              Comment

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