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No insurance and going paralyzed.

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  • No insurance and going paralyzed.

    I've had four spine surgeries and was working up until the end of May of this year. I was insured with United Healthcare and unfortunately no doctor took this insurance. Finally when I found someone that would at a major university hospital, I was told I would first have to start over with an internist at the university and work my way up to get to a neurosurgeon there. Mind you, I had suffered a spinal cord injury in 2005 from a rear-end collision, which required a 4th surgery so I wouldn't go paralyzed and have not been able to even have a follow-up from that surgery to this day. They took my car insurance for the surgery, but refused to do a follow-up saying that they had to use my insurance from work but didn't take that insurance. So i finally get to a point where I FINALLY can see someone after seeing a neurologist that says I need further surgery and recommended me to a neurosurgeon there, but unfortunately while I'm on an intermittent FMLA at work, I was *let go*. I was given a month of severence and insurance, but unfortunately they couldn't get me in right away until the insurance was exhausted, but I kept the appointment anyways. I went to Social Security to reinstate my previous disability, as my condition is deteriorating drastically (weakening in limbs, losing more feeling, no feeling in lower torso into legs, tremendous pain, severe stenosis in cervical spine and lumbar spine, bowel/bladder incontinence/restriction, etc). I am currently on a provisional benefits, pending my reinstatement of benefits, which I'm told will be granted. I was also given a letter back in June that stated I would be receiving Part B insurance starting in July. (My appt was scheduled for Aug 5) However, when I received my Medicare card, it only showed Part A insurance. I was told by Medicare that it was a mistake and that they would send out another card and not to worry, but it would take another 4 wks. In the meantime, they were to send me a letter to show the doctor that I had insurance. The end of July came and nothing. Called again and they tell me I don't have Part B, but shows that monies were taken out for it for 6 mths. Unfortunately because of their mess-ups I had to cancel my long-awaited appointment. Now it's the end of Aug and I STILL have not had confirmation. I even called Social Security Operations and was told the same story, would send me a letter and send another card. NOTHING! Meanwhile I have had several calls from different universities about my case and trying to set up an appointment for me (because I am told I will go paralyzed once again if left), but I don't answer the phone because I still don't have the insurance! It feels hopeless. I don't get any call-backs and noone at SS will help me. They don't even care that I will go paralyzed! What does someone like myself DO when this has to do with the government?! I am a single mother that needs to be here for her kids! I was previously on disability for my major problems, but decided to go back to school and get a degree (drove 2 hrs each way every day to do so and graduated cum laude) so I could work once again and did so (8 yrs more) and stuck it out through all the pain and even after the spinal cord injury because I thought I was doing the right thing! Now I cannot work because my condition is so bad and still cannot get to the doctors. I have been dealing with this mostly all my life. I'm sick and TIRED of the discrimination from my spinal problems. I'm at a point where I am close to just giving up and have thought of ending it, but then my kids would have noone. What does someone like myself DO to get help with my predictament? No doctor will take me without insurance, yet SUPPOSEDLY I have insurance, but because of a technicality, I don't have it according to their system?! Has anyone else experienced this?

    1981-Harrington/Luque instrumentation T9-L5 for 30 degree thoracolumbar curve. Dr. Shufflebarger
    1990-Revision surgery-Broken hardware/flatback deformity/pseudoarthrosis-Cotrel Dubousett instrumentation with extension into sacrum. (never done correctly) Dr. Shufflebarger
    1995-Revision surgery-Severe flatback deformity/kyphosis-Moss Miami instrumentation (T5-sacrum) with titanium cages (back/front/back procedure), thoracoplasty, total reconstruction with osteotomies. (surgeon did surgery while coming down with chicken pox and developed encephalitis with brain damage, etc during 14 hr surgery) Dr. Shufflebarger
    2005-Car accident-spinal cord injury/myelopathy from top of rods/hooks at T5. Surgery to remove hardware, with exception of cages. Permanent damage. Dr. Campbell
    2008-5th surgery pending for severe stenosis in cervical spine, as well as lumbar spine because of prior surgeries.

  • #2
    Omgosh... I am SO sorry you are going through all this. I really don't know WHAT you can do. Is there a Social Security office you can go to and demand to talk to someone? Maybe meeting someone face to face can help get the ball rolling more? Also talk to the Drs at the University, maybe they can help. Tell them what is going on, maybe they have a solution. I pray that something works out.

    ***HUGS***
    Kelly
    Mom to Becca (11), Mikey (8) and Tommy (3)
    Becca started wearing boston brace 8/13/08
    38* curve out of brace

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    • #3
      When my great aunt had a problem with Social Security payments she contacted her local state congressman and got help immediately. Or try your representative. My elderly mom had a problem with a property tax rebate and got immediate help from her State representative.

      I had an inaccurate NJ Auto Title which stated it has 500 miles on my new car-making it look like a used car but the odometer only said 21 miles. Months went by and no help from the dealer. I contacted my local congressman and had a new title in 2 weeks.
      Remember, we pay these guys' salaries.

      These people have local phone numbers or can be e-mailed.
      Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
      Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

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      • #4
        You are definitly under a lot of stress & pain. I have heard success stories of people who contact there representatives, they put you in touch with someone in the office who deals with these matters, and things seem to progress much faster. They can check on the progress of your disablity claim & insurance.
        Also, if you have the energy, go to your local SS office and demand to see people, appointment or no appointment. I've known people to show up just about everyday. Eventually they would rather resolve the issue than see you everyday.
        A lot of it is time consuming and mentally tiring, but in the end, worth the work for you to enjoy your kids.
        Good Luck,
        Emily

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        • #5
          Oh damn. I'm sorry you are going through this. As others have stated go to your state rep and see what can be done. Its a shot in the dark, but any shot is worth trying.

          Keep us informed and I hope things work out for you.

          Brad
          Surgeries July 26th & August 3rd 1983 (12 years old)
          Still have 57 degree curve
          2 Harrington rods
          Luque method used
          Dr David Bradford
          Twin Cities Scoliosis Center
          Preop xray (with brace on)
          Postop xray

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          • #6
            hi

            i would contact the local new station as well as ss office and let them know of your intent to get a local eporter cover this gross negligence. Id also get a lawyer that handles disabilty and see if thier neglience is a case for a law suit. The time they are taking could leave you paralyzed and thatis NEGLIGENCE

            dont sit and wait , pray for strength and fight back
            Donna

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            • #7
              Go to some sort of hospital that will treat your case or find some sort of insurance or something that will help you pay. You only get one set of nerves, that is really unfair that they don't except your insurance!
              Good luck, I hope all goes well

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