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    c-1 confused and frustrated

    My nephew had a mva on April 26,2009. when we arrived at ER they said he had three cervical fx, and one back fx but when ask three times assured us no spinal cord involvment. he was unconcious and had a almost descalping of forhead. sinus bone crushed had to have reconstruction. so we thought it was brain injury. well three days later a emergency meeting was called with family that nuro said he was a c1 complete, would never know, breath , eat ,talk function from chin down again if he made it through. They wanted us to donate his organs and take off lifesupport. we left it to god and now he is slowly getting better. He has been off all o2 for weeks now. breathing on his own, eating and drinking anything., may get trach out next week, and finally just this week started moving his left arm from side to side like a rocking motion and can bend his arm to his face if you hold it up for him. he says he has burning and muscle twiching in his right arm to and that is how is right started. when i do rom with his legs he unconsiously pulles right leg to his chest with moderate force, i have begged him to have another mri and reclassification but dr.s just seem like they are in no hurry. if anyone can help me understand all this please help . sorry so long

    #2
    Hello, Nicky
    Very sorry about the horrible injury, but glad that you found CareCure, where you'll get a lot of help, and so will he, more directly after he's had some rehab. It's great that he's getting some recovery. The one thing that's certain is that everybody is different, and it's hard or impossible to predict what will happen. The injury level defines how much of the body has potential impairment of function. "Complete" means that there is no sensation or control at the anus. It does not mean that there is no function below the injury. So there's a lot of room for hope yet.
    Best wishes,
    - Richard

    Comment


      #3
      He is fortunate that his injury is NOT complete. If he were truely complete at C1 he would not be breathing on his own or moving anything below his face. They are incorrect about the prognosis though. Even with a complete C1 injury many people can talk and eat, and they certainly are cognitively intact (unless they also had a significant brain injury). The fact that he is breathing on his own means he is very incomplete. Another MRI would not be very helpful at this point, but he should have another complete ASIA exam NOW. If the doctors are reluctant, perhaps they don't actually know how to do an accurate ASIA exam. It does require comprehensive training and practice to do it right. Personally, it would freak me out to have my family member still under the care of a physician who was so willing to so quickly give up on him and pull the plug!

      Regardless, it is critical that he get into an appropriate specialty spinal cord injury rehabilitation center without delay. It does not sound like he is in the right place right now. Where is he? Does he have decent insurance? If possible, I would try to get him to the Shepherd Center in Atlanta without any further delay.

      (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
        Hi Nicky,

        I can understand y'all being confused and frustrated, but your nephew is unbelievably LUCKY!

        I'm a C1-2 complete. I learned to eat, drink, talk, and breathe some on my own, but it was all a major struggle/challenge (and I'm still vent-dependent, though I may get a diaphragm pacer later this year). And like everyone here, I hate hearing that another person is dealing with paralysis, but I'm quite glad your nephew is improving.

        I agree with SCI-Nurse KLD, if at all possible, get him to the Shepherd Center in Atlanta (since we're assuming he's in Kentucky, like your location says?). Shepherd is where I rehabbed, and they should be able to help your nephew recover as much as God allows.

        God bless!

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

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

        Comment


          #5
          Thank you to all that have posted back. This site has been a great source of information to us through this very difficult time.
          My nephew was first took to a trauma center where he stayed about six weeks, this is where the problems began. We were under the impression we were waiting on a bed in georgia for rehab but it never came through, we were then gave the only option for a acute care in louisville. i contacted shepherds , they told me to check his ins. which is kentucky medicaid and see if it would transfer or pay for georgia , his grandmother said she checked into it and said he would have to be a residence of that state. ???? so the closest thing to georgia i could find in ky is frazier rehab in louisville. they say they specialize with spinal cord rehab,but when the case mananger came by last week she said she needed one family member to stay the whole time with him to be trained to take care. this being a whole three weeks, this seems to be not enough rehab time for him. We have not seen a neuro, orth dr since the first week in the other hospital. When i ask about further test to even see about neck and back brace needs that is now to big due to weight loss the only reply was that the dr would order it when he saw a need.
          other than this i think we are doing ok, they sat him in a recliner yesterday for the first time. had to switch his pain meds. and a stage two ulcer/skin tear to top of coccyx is slowly improving. by the way any one know of a cell phone that can be adapted for him to use voice req.
          again thank you. we will always have hope, can't take that away.

          Comment


            #6
            Unfortunately with only Medicaid funding, it is very common to only get 3-4 weeks of inpatient rehab. Will he also be getting outpatient therapy there?

            I would sit the case manager down and insist on getting a new ASIA exam for him, and also getting the brace re-evaluated by an orthotist. Don't leave until they agree to get this done. This is a CARF accredited Spinal Cord System of Care. CARF expects the program to be patient-centered and responsive to the needs of the person served (the patient) and their family. They must provide you, in writing, information about grievence procedures and patient's rights if you request it. CARF requires that his doctor be a specialist in SCI rehab, so they should be able to do an ASIA. This would usually be a physiatrist, who should be more expert in rehab and doing an ASIA exam than a neurologist or orthopedist, but they should also be consulting about his bracing and spinal stability.

            The case manager's job is to be his advocate, not just to do what the insurance company wants them to do. If you don't feel they are responsive, you can also file a complaint with CARF here:

            http://www.carf.org/consumer.aspx?content=cs_Contact

            They will then have to answer to his complaint when they have their next 3 year re-accreditation survey.

            Do a search on the Equipment forum here using the key words "phone" and "voice" and you should find numerous previous discussions about options for a telephone. His OT should also be helping you find resources for this.

            (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
              Originally posted by BillMiller823 View Post
              Hi Nicky,

              I can understand y'all being confused and frustrated, but your nephew is unbelievably LUCKY!

              I'm a C1-2 complete. I learned to eat, drink, talk, and breathe some on my own, but it was all a major struggle/challenge (and I'm still vent-dependent, though I may get a diaphragm pacer later this year). And like everyone here, I hate hearing that another person is dealing with paralysis, but I'm quite glad your nephew is improving.

              I agree with SCI-Nurse KLD, if at all possible, get him to the Shepherd Center in Atlanta (since we're assuming he's in Kentucky, like your location says?). Shepherd is where I rehabbed, and they should be able to help your nephew recover as much as God allows.

              God bless!

              Bill Miller

              Not that it's really connected to the original post, but i have all kinds of respect for you complete high quads out there. I'm an incomplete C-6 quad and it's beyond frustrating to be so limited, but you guys have it so much tougher. My roommate briefly while at the hospital was a vent quad and just a really good guy, a drunk driver caused the injury. Yet, he didn't hate the driver or act bitter, blew me away. It seems like you have a positive attitude also, props to you Bill.

              Comment


                #8
                Thanks TheDuder.

                Not to detract from the original poster's thread, but being angry and bitter, though often justified especially if one's injury is at the hands of another, it simply doesn't help. Remaining "actively angry" at the person who is responsible for one's paralysis -- or at the fact one is paralyzed -- robs the paralyzed person of the ability to try and enjoy what can still be enjoyed today (and I pray nobody has circumstances or pain such that nothing can be enjoyed today). I'd be happy to elaborate, but I don't want to hijack the thread.

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

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

                Comment


                  #9
                  How old is he? Is Shriners an option?
                  Ugh, I've been kissed by a dog!
                  Get some hot water, get some iodine ...
                  -- Lucy VanPelt

                  Comment


                    #10
                    quad.

                    My nephew is 26 yrs old. So shriners is out. He is awaiting a bed at Frazier in Louisville,ky right now. PT is coming three times a week to see him right now. Yesterday he was lifting his left arm off the bed about a inch, which is new for him. extention of left arm is improving some. still nothing on right side. hey i guess all in strides. We still pray and have hope,untill then we work hard. Does any one know anything about this Frazier rehab and neuro science center? Anything i can do with him as far as exercise,rom till then that can help?

                    Comment


                      #11
                      Nicky, I must have misunderstood you above. I thought he was already at Frazier. What is the hold up in getting him moved? Forget what I said about filing a complaint with CARF. It appears that you have issues with the hospital where he is now, and once he leaves, I would strongly recommend that you write a letter of complaint to the hospital director about how he was treated while there, and their lack of responsiveness to his needs.

                      Frazier does have a decent reputation, and is CARF accredited as a Spinal Cord System of Care, which is a strong indication of the quality of its programs.

                      (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


                        #12
                        I'm confused too.

                        Is he in the hospital or at home? It's hard to tell from your postings.
                        Ugh, I've been kissed by a dog!
                        Get some hot water, get some iodine ...
                        -- Lucy VanPelt

                        Comment


                          #13
                          sorry for confusion

                          My nephew was first taken to local trauma center where he spent about six weeks. we were told there we were waiting on a bed at shepherds. when it did not work out they said they had to transfer him to a bed at kindred in louisville while awaiting rehab center. From my understanding this is a acute hospital and they were to finish his medical care. i was then frustrated and confused i then started looking into other rehab besides georgia due to his insurance. Thats when I Myself found frazier rehab center and recommended it. luckly it was just across the street. he is still at kindred awaiting his rehab bed at frazier. Medically besides a pressure ulcer he is stable. We have felt that case/social workers are trying to put us off. it might just be our raw nerves but that is what it seems. If they tell you they do not have a bed what else can you do. i personally think and it is just me saying, that they feel he is a case that is "here is a boy that has a injury that is castastophic and this is his insurance so what is the use" We believe that everyone deserves a chance and he has proved the medical community wrong thus far. Why does our goverment not support these injuries more, i work in a hospital and see much less sickness get better care out of insurance. very frustrating. The plan as of now is to get a bed a frazier and three weeks of rehab then bring him home. after that who knows what is to come.

                          Comment


                            #14
                            Kindred is not a rehab center or an acute care hospital. They are an LTAC (long term acute care) facility, which is sort of a nursing home that takes sicker patients than most nursing homes.

                            Call Frazier every single day and ask when they are going to take him and and why the delay. You probably will have to be a thorn in their side in order to get your nephew what he needs.

                            (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


                              #15
                              moving forward

                              Brandon was moved tuesday to frazier rehab. So far it is great. All the doctors came and spoke with us. They evaluated him and say he is now a c4, that the vert was fx at c1 no spinal involment. He can move and feel his left arm to his hand but no fingers. right side he can feel to his elbow with no movement. can feel to niple line. Yesterday they got him up dressed him (for the first time since mva) Thearpy was done in gym, then in bed. sit in wheel chair all afternoon. showered. got new neck and back brace. Say we will work on bladder/bowel training , and removal of trach. This is great . more than we have seen in one day we have had in two months. Thank you all for information and posts it is nice to have other people that relate and can help. love this site. knowlege is endless. and power. they are now saying his insurance will pay for six weeks of rehab. does anyone think there is still chance for improvement with hand/finger dexterity.?IF so has there been others to drive automobiles with this injury with spec, equipment?

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