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    C4 injury

    My son, 17 on 7-7-15, sustained a spinal cord injury at the end of June as a result of a swimming incident. He underwent surgery to fuse C3-C6, has motor control of only his upper arms/shoulders but sensory almost everywhere (cannot distinguish hot/cold but can feel "something"). He's currently still ventilator dependent but trying to wean off (55cc on his own yesterday). He's still in a great deal of pain on and off and is incredibly frustrated. We are at a very good rehab center that we trust completely, but I am feeling useless and running out of ways to keep his focus positive.

    #2
    Welcome to CareCure. You will find many others who have been through this with their family (or themselves) here and who can provide you a lot of information and support. Where is your son right now?

    It sounds like his injury may be what is called anterior chord injury. Are you say he has completely normal sensation everywhere? That is very rare with anterior chord. Usually there is only sparing of position sense and pressure with that type of incomplete injury. What have they said is his AIS (ASIA Injury Score)?

    At this point he is probably dealing with two types of pain: acute pain from the fracture/dislocation and surgery to his neck, and early chronic neuropathic pain. It is important that both be treated, but in different ways. His SCI physician (should be a physiatrist) should be able to talk with you and him about this more, and develop a plan for management with all of you.

    It is not realistic to always expect him to have a "positive focus" at this point. He has had a devastating injury, and at a young age. He needs to be allowed to grieve and deal with mourning his losses. Is he working with a good rehabilitation psychologist at this time? This person should be an integral part of his team and he should be meeting on a regular basis.

    When you say 55 cc. for his breathing, do you mean that was his vital capacity on his own? That is very low, but continued efforts on weaning should continue. Has anyone mentioned the use of 4AP (Ampyra) or Oxandralone? Both are drugs used for other purposes that may help strengthen weak respiratory muscles and have been used in ventilator weaning protocols in some centers. Ask your son's physiatrist about this.

    Hang in there, spend some time reading old posts here, and come back to ask more questions. 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


      #3
      He is at Shepherd. His sensory isn't normal, pain and pressure sensation but no temp or light touch in most areas. He describes some of the sensation as a "numb feeling". They're reluctant to give a definite AIS score but we have heard B and C. His speech is still very limited making this albeit more difficult and frustrating. Yes, 55cc vital capacity, I will inquire about those. My wife is the one with him during the weeks so some of my info is 3rd party. Thank you.

      Comment


        #4
        Shepherd is an excellent center. If he does not make fairly rapid progress in his weaning you may want to ask about the use of a diaphragm pacer (surgery), which can be used temporarily, and has been used as part of a weaning protocol, or for long term use for those who are unable to be weaned.

        Anterior cord syndrome is a common incomplete syndrome, usually occurring from hyper flexion injuries (the head forced forward violently) such as diving injuries or front-end car collisions. He would have to have some muscles working below his level of injury (even weakly) in order to be called an AIS C.

        What are they doing to work on him being able to speak while on the ventilator? Use of a Passey-Muir valve, which requires that his trach cuff be deflated, is possible, but will also require changes in the ventilator settings when the cuff is down (to compensate for the leakage of air that occurs with a deflated cuff).

        (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


          #5
          We've received fantastic care so far and are thankful to have the opportunity to be here. I came across mention of a pacer in a study I stumbled on several days ago, putting it on our list. He dove into a lake on vacation and I suppose hit shallow though my daughter had jumped first with no issue and our depth finder was clicking at 15ft. To my knowledge there's been no intentional movement but his therapist "feels energy" in his muscles, whether she means potential or something concrete, I can't be sure. The answers we seem to be getting circle around that it's early, the possibilities are endless, and that we should stay positive. For speech they're deflating the cuff which is only lasting about an hour a day, often less. Outside of that hour it's a battle of lip reading and using an alaphabet board which has him overly frustrated and on edge.

          Comment


            #6
            Is he working with both speech pathology and a psychologist?

            (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


              #7
              Yes he's working with both.

              Comment


                #8
                Hi TThomas.

                I can relate with much of what you have written from the patient's perspective.

                I am a C1-2, Shepherd Center alumnus. Being a higher level injury, I was not able to wean, but I hope your son will be able to. The nerves related to breathing begin at the C3 level, which per your post, your son should have access to. If I'm not mistaken, breathing relates to C3-C5, but your son is also classified as incomplete, so he could access C5 despite being injured at C4.

                Four months have passed since you posted… how is your son doing?
                Wheelchair users -- even high-level quads... WANNA BOWL?

                I'm a C1-2 with a legit 255 high bowling game.

                Comment


                  #9
                  Originally posted by BillMiller823 View Post
                  Hi TThomas.

                  I can relate with much of what you have written from the patient's perspective.

                  I am a C1-2, Shepherd Center alumnus. Being a higher level injury, I was not able to wean, but I hope your son will be able to. The nerves related to breathing begin at the C3 level, which per your post, your son should have access to. If I'm not mistaken, breathing relates to C3-C5, but your son is also classified as incomplete, so he could access C5 despite being injured at C4.

                  Four months have passed since you posted… how is your son doing?
                  Wyatt (my son), has made some progress since I last posted. They were unable to wean him from the vent, citing extensive phrenic nerve damage. Due to the nature of Wyatt's accident he went without oxygen for an extended period of time resulting in brain injury, and we have been told that is a contributing factor in his level of function. That said, he has made some progress. He's gained some movement in his shoulders and has gained strength and mobility of his neck/head. He is back on solid food and his speech is continuing to improve with time and therapy.

                  We have been home for almost 2 months and working on adjusting. We're still battling temperature and blood pressure issues pretty often. Wyatt is set to return to school mid-January, and is rather excited (I suppose that statement in of itself is telling to how tired he is of my wife and I being in his space).

                  Shepherd was a great blessing and we're forever grateful for the care Wyatt received there and the friends made there.

                  Comment


                    #10
                    Hi tthomas,

                    Do you know if your son's phrenic nerve damage precludes him from benefiting from a phrenic pacer? I've been using one for nearly twenty-four years, and it's a huge improvement in quality of life.

                    I'm sorry your family is going through this. It's a constant battle.

                    Comment


                      #11
                      Hi again TThomas,

                      It would be great if a phrenic nerve pacer, or diaphragm pacing system might work for Wyatt, but I'm encouraged by what you wrote above. To find out that he is eating, talking, and ready to go back to school, and excited about it, that is very encouraging.

                      Using the words quadriplegic, ventilator, and brain injury in the description of a recently injured human… often that combination of descriptive words is not followed with encouraging news. I'm glad for Wyatt and your family.

                      Bill
                      Wheelchair users -- even high-level quads... WANNA BOWL?

                      I'm a C1-2 with a legit 255 high bowling game.

                      Comment


                        #12
                        Originally posted by BillMiller823 View Post
                        Hi again TThomas,

                        It would be great if a phrenic nerve pacer, or diaphragm pacing system might work for Wyatt, but I'm encouraged by what you wrote above. To find out that he is eating, talking, and ready to go back to school, and excited about it, that is very encouraging.

                        Using the words quadriplegic, ventilator, and brain injury in the description of a recently injured human… often that combination of descriptive words is not followed with encouraging news. I'm glad for Wyatt and your family.

                        Bill
                        We explored the potential of a diaphragm pacer with Shepherd, but after several tests we were told that Wyatt wasn't a good candidate. He's always been a very outgoing kid with a lot of friends, I think he's really missing the social interaction that comes with school.

                        Shepherd did an excellent job of restoring hope in us for Wyatt's future. His brain injury is not severe and we have been given the prognosis that with time and therapy there is significant healing potential. For now we take one day at a time and focus on the progress, if we didn't do so, I'm not sure we would make it.

                        Comment


                          #13
                          Originally posted by tthomas72 View Post
                          For now we take one day at a time and focus on the progress, if we didn't do so, I'm not sure we would make it.
                          This practice will serve you well. Sometimes thinking of long term or how many things need your attention is just too overwhelming. You just have to break it all down into small parts and knock those out one by one. Best wishes.

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