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C5 Incomplete, ASIA B, How long should they be in rehab?

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  • C5 Incomplete, ASIA B, How long should they be in rehab?

    My husband was injured on August 1. He fractured his C4, shattered his C5 and broke his C6. C5 and C6 were removed and he's wearing a Halo to repair C4. He just got to rehab on the 17th due to bowel complications, and they informed me today that they plan on discharging him on Sept 13th. This doesn't seem like nearly enough time. His neurosurgeon originally said he'd need several months of inpatient rehab so I'm shocked. He'll still have his Halo and I don't know how they expect me to get my house wheelchair accessible that quickly. They said he'll do out patient rehab 2-3/week 1-2 hrs per day, which doesn't seem like enough. Can anyone with an injury simililar to his share how long their stay in inpatient rehab was, so I can get an idea of what is effective?

    He was just assessed as a C5, incomplete ASIA B, and he is currently at Carolinas Rehabilitation in Charlotte, NC. I. I'm thinking of sending him to Sheperd in ATL, but we have a 2 yo and I'm pregnant so I cant move with him, and I don't want him to go alone. Any advice would be greatly appreciated!

  • #2
    Dear "Daveswife,"
    Welcome to the Care Cure Community. I think you will find this forum a great place for sharing information and ideas.

    So very sorry to hear about your husband's accident and injury and with two little ones and one on the way, both of you must be overwhelmed and that is understandable.

    I know times have changed, but 29 year ago, I suffered a spinal cord injury C6/7 complete and after having reduction surgery, wore a halo for four+ months. My rehab experience was 3 months in hospital rehabilitation, 1 month at home with the halo, and 2 more months in hospital rehab.

    I doubt you will be able to negotiate that, but I would certainly think you could argue more rehab than what you have been told. When you wear a halo, it is hard to get the benefit of the full rehab experience, because the halo can be so cumbersome and burdensome as to effect your ability to participate fully in the rehab experience (that is why I was sent home for a month and then returned to finish rehab unencumbered with the halo).

    I think you need to have a heart to heart talk with the doctor responsible for your husband's care and work toward a program that be most beneficial to your family situation.

    All the best,
    GJ

    Comment


    • #3
      I highly recommend the Sheperd Center in Atl. They help on all ends of dealing w the injury for your family and your husband. With being ASIA B this early on I would do everything possible to recover(Lokomat if eligible, intensive therapy) anything. Nothing is guaranteed, but a strong effort early on is good. Good Luck and be patient. Time helps.
      Donnie: Dr. Xiao, What are your thoughts on a cure/combination therapy for SCI's??
      CG Xiao: Donnie, I don't want to disappoint you, but I think it is impossible to restore the continuity of the cord or "bridge the gap" in the near future, let's say: 50 years. Dr Wise Young has been my most respected scientist in SCI. He has dedicated and contributed to SCI no other can match.

      Comment


      • #4
        The average amount of inpatient rehab being authorized by insurance companies for a person with a tetraplegic injury currently is 5 weeks. This is a decision of the insurance company, not necessarily the rehab professionals. Many insurances also look at the halo as something that "holds the person back" in rehab, and insist that intensive rehab wait until after it is removed. I certainly don't agree with this, but that is how things currently work. You can appeal this decision, but will need the medical and rehab team behind you to write the appeal. If they are lukewarm about appealing, it won't work.

        Is you husband by any chance a military veteran? If so, he is eligible for VA SCI rehabilitation, which is much more liberal on length of stay. Augusta, GA is your closest VA SCI center.

        If not, I would be working to get him moved to Shepherd ASAP. You can also look into family housing at Shepherd. While it is nice to have family there, it is not critical. What is critical is that he get the absolute best quality and quantity of acute rehabilitation he can get, regardless of where he needs to travel.

        (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.

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        • #5
          Contact Shepherd and ask them about the situation and see what they have to offer and advise. Is that the hospital's recommendation of what the insurance is paying for?
          Have you and caregivers been trained to care for him 24/7? It is pretty hard to evalutate and teach everything needed and set up in a week. Are they SCI rehab? Issues that they need to address- Just to begin-Bladder program- needs urodynamics. Bowel program. Audtonomic dysreflexia management. Wheelchair -needs wheelchair and seating specialist. Pulmonary issues.
          Will they be coming to the house for therapy? How will you get him there- do you have a wheelchair accessible van?
          Do you have home care services set up?
          Appeal to the insurance company if that is there decision.
          He needs home exercise program to follow.
          CWO
          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


          • #6
            Thank you all for responding. I have found this site to be extremely helpful and during this tough time I appreciate that. I plan on having on a heart to heart with Dr. I did contact Shepard and they have to get a referral for Carolinas Rehab, which I have already requested. My gut just tells me he needs more time so I'll do whatever I have to do to make that happen! Carolinas Rehab is the only SCI rehab in NC.

            To answer SCI Nurse, no unfortunately he's not a veteran. And part of the reason I am upset about him being discharged is because I have not had ANY training/discussions about his care at home. I have to work, plus we have a 2 yo and I'm pregnant so I physically can't provide 24/7 care. When I advised the social worker of this she suggested I find a family member who could rather than suggesting home health care. We have no transportation secured nor is our house ready. I'm not even sure if I called a contractor today that they would have the ramp and everything else needed, complete. Again I wont take no for an answer so just give me facts to help with my appeal. Thank you!

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            • #7
              I'm not sure where you are located in NC, but there is a rehabilitation hospital in Asheville called CarePartners Rehabilitation (formally Thoms Rehabilitation). I recommend Shepherd, but I was in Thoms many years ago after I was injured and they were great. I stayed there for about 11 months after a 1 month stay in the hospital, but that was back when insurance wasn't so messed up. I live north of Atlanta and would be glad to help any way I can while you research transferring to Shepherds.

              -- David

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              • #8
                My hubby was initially diagnosed as c5 asia c. He was injured 2/17 and stayed in hospital until 2/23. On 2/23 he went to inpatient rehab and his stay their ended on 4/5. That week he started outpatient 3 times a week (45 min ot & 45 minutes PT) and he is now going 2 times a week. My husband never had surgery and he wore the soft neck brace for the 1st two weeks. I was FAR from pleased to leave inpatient when we did because its a LOT of work. In retrospect I am happy we left when we did because we eventually had to deal with transitioning home. Things WILL get better. People here told me that and I thought they were crazy. I may not write a lot but I definately read this web site at least 3 times a week and the learning possibilities are endless!! If you ever want to talk I'm an email away!

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                • #9
                  Thanks again for your responses. I found out it was not an insurance decision, but was made by his Dr. I have a meeting with the Dr tomorrow so hopefully it'll go our way. I also have the referral into Shepard as a back up plan, but it kind of sounds like a month might not be too far off for his in patient rehab. It just seems so ridiculous, but everythings so new and there is a lot I don't know. I just feel like they are writing him off and saying he can't benefit from rehab, which makes me mad. In 1 week in rehab he has gotten 1 wrist back, slight finger movement, and 1 tricep back, and now I fear when he leaves his progress will slow down. Soukeynas, how was outpatient for your husband?

                  Comment


                  • #10
                    They can't send him home until caregivers are trained. and he will need several caregivers -even if you weren't pregnant. And you need home health assitance also whenever you can get it. and home therapy too. You need to call the case manager with the insurance company too and see what is going on. They must not have much experience with
                    sci.
                    CWO
                    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
                      Outpatient has been good. At first it was hard to transition from 3 hours to 1.5 hours. The center he goes to has transportation so they pick him up and drop him off. My husband has had to work very hard. To maximize your return you must work at home as well. On 4/5 when we left hospital we went to walmart and he bought 10lb wrist weights. Every day he would have us strap them on and he would work out. WHen his outpatient OT person heard this she said he should use 1 pound weights and I understood her concern. My husband insisted that he was getting return and refused to listen to her. My point in saying this is you have to listen to the professionals but the individual who is fighting must have a voice as well. Also understand his evaluations. During inpatient he was successfull with 5 pound weights so why would you tell him to only use 1 pound at home? I cant say who was right or wrong but I do believe that his determination and will-power brought him where he is now. His advice to others is to take what you got and run it! If your left arm works then exercise to the point that you could take out Holyfield or Tyson.

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                      • #12
                        With that kind of return so early on I hope you fight like hell and get them to approve a lengthy "recovery based rehab"! Shepard seems to be the best. I'm an incomplete. Although I spent 6 months in rehab, it wasn't based on gaining abilties(other than arms/hands) but just meeting goals from the chair. I'm a happy girl as is but I sure do wish I'd have known about Shepard 5 yrs ago. I just might have gotten alot more back. Best of luck to you both. Too many of us took the shitty advice and settled for less than what we deserved all bc we NEVER knew things were possible. You found a jewel in this site so early on.

                        It's not up to the dr. Yea, you need a dr. to write the orders for rehab so fight him, go around him,go above him! Threaten to sue for malpractice, whatever it takes.

                        If he doesn't get anything back after that battle, just know that life IS still possible. Hard ,but possible.

                        Comment


                        • #13
                          Wow, stuff sure has changed since my injury.. Personally I can't imagine 5 weeks for rehab for a tetra/quad..

                          Rehab for me was stay as long as you need, until you feel comfortable doing it on your own.

                          Reab back then was also washing your clothes, cooking..stuff you'd actualy do out in the real world. Not just working on balance, strengthening..

                          I actually feel sorry for new SCIs now a days..Talk about out of the frying pan and into the fire..
                          ---------
                          C5-6 / '88

                          Comment


                          • #14
                            Originally posted by Reed-edm View Post
                            Wow, stuff sure has changed since my injury.. Personally I can't imagine 5 weeks for rehab for a tetra/quad..

                            Rehab for me was stay as long as you need, until you feel comfortable doing it on your own.

                            Reab back then was also washing your clothes, cooking..stuff you'd actualy do out in the real world. Not just working on balance, strengthening..

                            I actually feel sorry for new SCIs now a days..Talk about out of the frying pan and into the fire..
                            It definately is a challenge. As a caregiver you feel overwhelmed and helpless. My hubby's inpatient no longer makes home visits so I had to take pictures/videos of my house and get recommendations from staff. Its very scary. I was trying to follow the hospitals schedule which was impossible. Its good to start that way if at all possible but you eventually have to find a schedule that fits your lifestyle. Other then teaching him how to put on his shirt and brush his teeth/wash his face we had to teach one another everything else. He can put on his left shoe but the right show is harder since he doesnt have fine motor skills and has foot drop. Is their a tool he can use to make this easier?

                            Comment


                            • #15
                              "Too many of us took the shitty advice and settled for less than what we deserved all bc we NEVER knew things were possible. You found a jewel in this site so early on.

                              It's not up to the dr. Yea, you need a dr. to write the orders for rehab so fight him, go around him,go above him! Threaten to sue for malpractice, whatever it takes.

                              If he doesn't get anything back after that battle, just know that life IS still possible. Hard ,but possible."

                              I love this post! Thank you! Just as an update, when I had my "heart to heart" with the Dr. on Friday he said that David would likely not get ANYTHING back. I was outraged, knowing he was only 3 1/2 weeks out from his injury, and decided right then and there we were not staying at Carolinas Rehabilitation. If the lead on his team, had no hope for help, I felt like it set the wrong tone for the rest of his Rehab. I spoke to Shepherd, who by the way completely disagreed and see a lot potential in David, and we are moving next Wednesday. We'll likely stay 2 months and he'll have 6 hours a day of rehab. So again, thank you for all your advice. I din't take no for an anser, and I think David will better off because of it!

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