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Thread: Inadequate Physical Therapy

  1. #1

    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?

  2. #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/

  3. #3
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    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.

  4. #4
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    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.

  5. #5
    Quote 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.

  6. #6
    Quote 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.

  7. #7
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    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

  8. #8
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    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.

  9. #9
    Quote 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.

  10. #10
    Quote 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...

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