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  • Inadequate Physical Therapy

    After reading several posts on this topic, it seems that most people here have had extensive physical therapy. My entire course of therapy involved one month of my two month hospitalization, where someone would do range of motion stretches on my legs for one hour, five days per week. Some days I would do a few lat pull downs or sit on the edge of a bench and try catching a ball (which I managed to do without trouble... just a bit unsteady). I am almost 4 years post injury (T8/T9 complete, which I learned two days before being released) and have had no further therapy. Immediately after I was injured I applied to Shepherd and had several phone conversations with someone there who said I was an ideal candidate for their program. My insurance denied me due to lack of necessity. Could I have hoped for more return if things had been handled differently? I wasn't even educated on healthcare issues and didn't realize I had the start of a pressure sore on my butt until the day after I was released from the hospital. I was simply told to check my skin daily for breakdown when I got home, so clearly they didn't follow their own advice, or just didn't want to deal with the sore since my discharge was imminent. I've basically been educating myself through the internet and this site, and through trial and error. Anyone else have a similar experience?
    Somewhere, something incredible is waiting to be known. - Carl Sagan

    How wonderful it is that nobody need wait a single moment before starting to improve the world. - Anne Frank

  • #2
    Sadly, there are many out there who are getting the same thing you experienced. There are many factors contributing to this tragedy, but the two main culprits are insurance companies that are more concerned about profits than people, and the lack of knowledge and expertise in hospitals that rarely treat an SCI. There was every justification in the world to send you to a model center as soon as you were medically stable. I wish I had been there to advocate for you. I would be interested in knowing what insurance blew you off like that.

    How are you doing with your functioning and what, if any plans do you have? How are you managing your follow-up care?
    You will find a guide to preserving shoulder function @
    http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

    See my personal webpage @
    http://cccforum55.freehostia.com/

    Comment


    • #3
      Wow. I am slowing gathering that this is becoming the norm. Can you appeal the Sheppard decision? The insurance is clearly in the wrong. You need to have this help to reclaim your life. Be proud that you have been active on the web and learning what you can.
      T4 complete, 150 ft fall, 1966. Completely fused hips, partially fused knees and spine, heterotopic ossification. Unsuccessful DREZ surgery about 1990. Successful bladder augmentation using small intestine about 1992. Normal SCI IC UTI problems culminating in a hospital stay in 2001. No antibiotics or doctor visits for UTI since 2001: d-mannose. Your mileage may vary.

      Comment


      • #4
        This site might be of interest.

        http://www.bmc.org/spinalcordinjurycenter.htm
        T4 complete, 150 ft fall, 1966. Completely fused hips, partially fused knees and spine, heterotopic ossification. Unsuccessful DREZ surgery about 1990. Successful bladder augmentation using small intestine about 1992. Normal SCI IC UTI problems culminating in a hospital stay in 2001. No antibiotics or doctor visits for UTI since 2001: d-mannose. Your mileage may vary.

        Comment


        • #5
          Originally posted by SCIfor55yrs. View Post
          Sadly, there are many out there who are getting the same thing you experienced. There are many factors contributing to this tragedy, but the two main culprits are insurance companies that are more concerned about profits than people, and the lack of knowledge and expertise in hospitals that rarely treat an SCI. There was every justification in the world to send you to a model center as soon as you were medically stable. I wish I had been there to advocate for you. I would be interested in knowing what insurance blew you off like that.

          How are you doing with your functioning and what, if any plans do you have? How are you managing your follow-up care?
          Thank you so much for your response, and yes, an advocate would have been helpful. One thing that didn't take me long to learn is how broken the system is. I was denied care at Shepherd by Medicaid (called MaineCare where I live) although it is specifically listed as an accepted insurance by Shepherd. My current care consists of a home health nurse that comes once a month to change my foley catheter, although this past month I have been seeing her twice a week to monitor some skin breakdown. Last week I found a new urologist who seems to be quite knowledgable about SCI, and am looking forward to working with her to resolve some issues. Aside from that I am on my own. I would like to work again but am clueless as to what I can legitimately do from home and still have healthcare. I cannot afford a vehicle and public transportation is virtually nonexistent in my area, aside from transporting me to and from Medicare approved doctor appointments.
          Somewhere, something incredible is waiting to be known. - Carl Sagan

          How wonderful it is that nobody need wait a single moment before starting to improve the world. - Anne Frank

          Comment


          • #6
            Originally posted by gac3rd View Post
            Wow. I am slowing gathering that this is becoming the norm. Can you appeal the Sheppard decision? The insurance is clearly in the wrong. You need to have this help to reclaim your life. Be proud that you have been active on the web and learning what you can.
            Thank you for your words of encouragement. I probably should have appealed the decision, and have no one to blame but myself for accepting the decision that was made. Thank you, also, for providing the link for the Boston center. Now that I have Medicare as my primary insurance, I wonder if that will work in my favor, as well as Boston being much closer in vicinity to where I live. We are currently dealing with an embarrassment of a governor in my state (whom I did NOT vote for) and I do not hold out hopes of having him on my side, as one of his biggest missions is to tackle Medicaid.
            Somewhere, something incredible is waiting to be known. - Carl Sagan

            How wonderful it is that nobody need wait a single moment before starting to improve the world. - Anne Frank

            Comment


            • #7
              Medicaid should be able to help with a model center. The real issue there is that there are strict limits on duration. Do you have any access to outpatient therapy? If you can find a therapist that is either knowledgeable about SCI (rare away from model rehab center areas) or willing to do some research and learning (including communicating with the therapist at the Boston Center), it will benefit you in the long run.

              Since Medicare is a federal program, you are not tied to what your state allows like you are with Medicaid. You are free to cross state lines to get the treatment you need.

              My son had the benefit of going to Shepherd and plans to return for gait training when he is ready. He has a local therapist that works with him three times a week. Of course, it did not hurt that he was a minor at the time of his injury and his mom (me) was a pit bull regarding getting insurance to send him to Atlanta instead of a local non SCI specialized facility. It has made all the difference and I do not think it is ever too late to learn to maximize the function that you have.--eak
              Elizabeth A. Kephart, PHR
              mom/caregiver to Ryan-age 21
              Incomplete C-2 with TBI since 3/09

              Comment


              • #8
                Embarrassment for a governor seems to be the norm.

                Don't give up. Ever.

                As a T8/9, you can lead an active and productive life. Maine is being penny wise and pound foolish. I am a T4 and benefited from perhaps $100,000 in benefits from the government at the time of my injury. Big money then. But they got it back many times over in taxes over my lifetime. Plus the education of hundreds of engineering / computer science students.
                T4 complete, 150 ft fall, 1966. Completely fused hips, partially fused knees and spine, heterotopic ossification. Unsuccessful DREZ surgery about 1990. Successful bladder augmentation using small intestine about 1992. Normal SCI IC UTI problems culminating in a hospital stay in 2001. No antibiotics or doctor visits for UTI since 2001: d-mannose. Your mileage may vary.

                Comment


                • #9
                  Originally posted by ekephart View Post
                  Medicaid should be able to help with a model center. The real issue there is that there are strict limits on duration. Do you have any access to outpatient therapy? If you can find a therapist that is either knowledgeable about SCI (rare away from model rehab center areas) or willing to do some research and learning (including communicating with the therapist at the Boston Center), it will benefit you in the long run.

                  Since Medicare is a federal program, you are not tied to what your state allows like you are with Medicaid. You are free to cross state lines to get the treatment you need.

                  My son had the benefit of going to Shepherd and plans to return for gait training when he is ready. He has a local therapist that works with him three times a week. Of course, it did not hurt that he was a minor at the time of his injury and his mom (me) was a pit bull regarding getting insurance to send him to Atlanta instead of a local non SCI specialized facility. It has made all the difference and I do not think it is ever too late to learn to maximize the function that you have.--eak
                  Your son is very fortunate to have you. I do not currently have access to outpatient therapy. When I was refused the chance to attend Shepherd by Medicaid, I was told I could seek therapy at a local hospital for a very limited period of time. I paid a visit to the hospital and talked with one of the physical therapists there, and during that time we both decided that the time spent would be of little use. She had zero training with SCI patients and thankfully was upfront about the fact that there was little she could do for me besides the range of motion stretches that I could easily perform myself at home. When I met with my new urologist on Monday, she stated that I should be in therapy, so I know I have at least one advocate on my side. I know I would benefit from it, but it seems insurance companies don't care much about that.
                  Somewhere, something incredible is waiting to be known. - Carl Sagan

                  How wonderful it is that nobody need wait a single moment before starting to improve the world. - Anne Frank

                  Comment


                  • #10
                    Originally posted by gac3rd View Post
                    Embarrassment for a governor seems to be the norm.

                    Don't give up. Ever.

                    As a T8/9, you can lead an active and productive life. Maine is being penny wise and pound foolish. I am a T4 and benefited from perhaps $100,000 in benefits from the government at the time of my injury. Big money then. But they got it back many times over in taxes over my lifetime. Plus the education of hundreds of engineering / computer science students.
                    Yes, what's that old saying, an ounce of prevention is worth a pound of cure? I'm not sure why those holding the keys have such a hard time understanding this, when their decisions repeatedly cost them more in the long run. If they spent more time and energy discerning the abusers from the people who legitimately need assistance, finances wouldn't even be an issue. But that's another story...
                    Somewhere, something incredible is waiting to be known. - Carl Sagan

                    How wonderful it is that nobody need wait a single moment before starting to improve the world. - Anne Frank

                    Comment


                    • #11
                      The problem with Medicaid is that the state insists that the benefits be spent in state, regardless of the required level of care.

                      Ryan was fortunate in that he was covered by group health insurance by his dad's employer. I still had to fight to get him the care we all needed. At the time he was discharged from the trauma hospital, there is no was he could go home, forget have any level of independence. I fought through several levels of management with the logic that they could either pay for the treatment he needed of they could pay for him to spend more time in the trauma hospital until he could be transferred to a nursing home. In addition, his drain on the medical system would be considerable for the rest of his life. The problem is that the insurance companies are very short sighted, driven only by current quarter's profits. They actually are counting on the patient becoming someone else's problem as soon as possible. Ryan was not covered at all by Medicaid until the day after he was discharged from Shepherd (until he returned to VA). Insurance does not care if you get better or if you die, just do it in a timely manner.

                      Our current health insurance (husband changed jobs) does not cover Shepherd in their network. We chose that plan however, because there are not limits on medically necessary therapy and no limits on DME. Luckily, Ryan's doctor has no problem helping with the fight that his therapy is medically necessary. Ryan knows he cannot go back to Shepherd until Medicare kicks in this September and is working toward that goal. At least, he is not limited to a set number of therapy visits as he would have been had we chosen the plan that has Shepherd in network. He has been able to return to school (though on a part time basis) and plans to become a contributing, tax paying member of society. He managed to complete his high school requirements while at Shepherd and has taken classes at the local community college with the plan to transfer to UVA when he is ready. He will get there and the work he is putting in now will help ensure his success. He know what hard work can do for you, given the proper tools.

                      Contact the Boston Center as soon as possible and see what you have to do to get there. While Medicare has annual limits, you get that limit every year and Shepherd will work with you and send you home with goals and work you can do on you own if necessary.

                      Insurance may suck but not having it sucks even more.--eak
                      Elizabeth A. Kephart, PHR
                      mom/caregiver to Ryan-age 21
                      Incomplete C-2 with TBI since 3/09

                      Comment


                      • #12
                        Thank you for your insights. I am incredibly grateful to have insurance at all, as I had always worked two jobs prior to my injury and had to hope that I'd never get sick, but it is certainly not hard to see the immense problems that exist within the system. It's heartening to know that your son is getting the care he deserves and that he has such drive and determination.
                        Somewhere, something incredible is waiting to be known. - Carl Sagan

                        How wonderful it is that nobody need wait a single moment before starting to improve the world. - Anne Frank

                        Comment


                        • #13
                          Have you been in touch with your state vocational rehab agency? The quality of the agencies varies from state to state, but their mission is to help people with disabilities return to work. You sound like the perfect candidate. They can provide training/education, possible support for a vehicle, possibly supplemental therapy, and vocational counseling. I would encourage you to get in touch as soon as you can because they may able to direct you to other resources.
                          You will find a guide to preserving shoulder function @
                          http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

                          See my personal webpage @
                          http://cccforum55.freehostia.com/

                          Comment


                          • #14
                            Originally posted by SCIfor55yrs. View Post
                            Have you been in touch with your state vocational rehab agency? The quality of the agencies varies from state to state, but their mission is to help people with disabilities return to work. You sound like the perfect candidate. They can provide training/education, possible support for a vehicle, possibly supplemental therapy, and vocational counseling. I would encourage you to get in touch as soon as you can because they may able to direct you to other resources.
                            Yes, I contacted them within the first year of my injury. The office is located over an hour away and when I told her I wasn't sure how or when I would be able to get there, she said there was little she could do to help me if I didn't have a vehicle and didn't drive. When I asked to speak to someone else, I was told she was the only person who handled "such cases". I then called the organization that helped me get my wheelchair, and who actually had directed me toward voc rehab. The man I spoke with was very kind and said he had a similar experience with the same woman I spoke to. She made him feel as though he couldn't possibly have obtained a master's in english, being a quad, and asked to see his diploma on the spot. He offered me another phone number to try but admitted it might not be of help, and rightfully so. It was no longer in service. Mind you, this was almost three years ago and I have not been in touch with voc rehab since that time, so things very well may have changed. It certainly can't hurt to make a phone call.
                            Somewhere, something incredible is waiting to be known. - Carl Sagan

                            How wonderful it is that nobody need wait a single moment before starting to improve the world. - Anne Frank

                            Comment


                            • #15
                              I thought things were bad in South Carolina, but it seems that Maine really sucks when it comes to human services. I will give this more thought. Hang in there.
                              You will find a guide to preserving shoulder function @
                              http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

                              See my personal webpage @
                              http://cccforum55.freehostia.com/

                              Comment

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