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Surgery option eliminated due to Insurance denying Forteo for Osteo

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  • #16
    bones

    I consulted a metabolic bone specialist when some jerk of a radiologist read my X-rays as "profound demineralization of the skeleton". I became very frightened because this was a couple of years post-op. The glare from the hardware obstructed his view.
    The specialist diagnosed me with osteopenia but said I did not need any bone-building meds. She did find low Vit D even though I WAS taking calcium and vit D. I then was advised to take 1800units of vit D/daily. she also checked my parathyroid function which is involved in bone metabolism.

    Anecdotally, one lady, diagnosed with low bone density, decided against bone meds and got her bone density up at the gym. By the next visit to her doc she didn't need meds.

    A forum member suggested finding a doc who would do it now but what if you do not fuse properly and the hardware doesn't hold???
    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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    • #17
      A forum member suggested finding a doc who would do it now but what if you do not fuse properly and the hardware doesn't hold???[/QUOTE]

      That was me.My doctor said that he would be willing to look at her records and see whether or not he felt that he could do her surgery

      There is no guarantee that fusion will happen in any case

      Melissa
      Melissa

      Fused from C2 - sacrum 7/2011

      April 21, 2020- another broken rod surgery

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      • #18
        What generic meds will reverse osteoporosis? I was told the only to help improve enough for surgery is Forteo.
        Pam, age 49
        Thoracolumbar curves 80 and 40 corrected to 20 degrees
        April 20, 2012 surgery with Dr. Lenke
        T-3 to sacrum

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        • #19
          I took high dose of supplements and went from severe osteoporosis to normal and borderline osteopinia in left hip in 8 months. My t scores at it's worst was -4.7. It is possible to restore Never took supplements before this and I believe in them now. Don't give up. Going to surgeon in september and see if he will do the surgery.

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          • #20
            I came across this thread about reversing osteopenia/osis without using meds http://www.inspire.com/groups/nation...ies-w-o-drugs/

            Interesting.

            Warmly,
            Doreen
            44 years old at time of surgery, Atlanta GA

            Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
            Post-Surgery curves ~10 degrees, regained 4 inches of height

            Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
            2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

            http://thebionicachronicles.blogspot.com/

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            • #21
              Originally posted by TwinmomTN View Post
              What generic meds will reverse osteoporosis? I was told the only to help improve enough for surgery is Forteo.
              Check out the Mayo Clinic and WebMD web sites for osteoporosis medications. I was taking Alendronate for my osteopenia. Probably Forteo works best, but that doesn't mean that the other meds don't work.
              Sally
              Diagnosed with severe lumbar scoliosis at age 65.
              Posterior Fusion L2-S1 on 12/4/2007. age 67
              Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
              Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
              New England Baptist Hospital, Boston, MA
              Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

              "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

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              • #22
                I didn't want to say anything until we kicked off the study this week, but if you're interested in traveling for surgery to UCSF, we're doing a study of Forteo and spinal fusion. You can read about it here:

                http://clinicaltrials.gov/ct2/show/N...+fusion&rank=1

                --Linda
                Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
                ---------------------------------------------------------------------------------------------------------------------------------------------------
                Surgery 2/10/93 A/P fusion T4-L3
                Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

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                • #23
                  am searching for the right calcium to take...
                  (i cannot take anything like Actonel or Forteo as i am still getting
                  dental implant work done, and will be for about another year)...
                  also need to find doctor in Manhattan who specializes...i
                  think my gyn once gave me a name and i need to ask her for it
                  again...
                  has anyone heard of Ezorb?

                  "One month supply, 180 gelatin capsules, normal size, light weight,
                  easy to swallow. Each contains 560mg calcium aspartate anhydrous"

                  ???

                  thanks...
                  jess

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                  • #24
                    Originally posted by jrnyc View Post
                    has anyone heard of Ezorb?

                    "One month supply, 180 gelatin capsules, normal size, light weight,
                    easy to swallow. Each contains 560mg calcium aspartate anhydrous"

                    ???
                    Jess, are you asking what form this is?

                    Aspartate is an amino acid and anhydrous means no water molecules attached.

                    Calcium has a plus two charge and so has to be combined with a negative ion of minus two charge to have a neutral final complex. The amino acid is a good choice it seems.

                    The point is to get the calcium into the body in a form that can be used.
                    Sharon, mother of identical twin girls with scoliosis

                    No island of sanity.

                    Question: What do you call alternative medicine that works?
                    Answer: Medicine


                    "We are all African."

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                    • #25
                      TwinMom, DO NOT GIVE UP. Show your surgeon what the insurance company responded with, see what he says. Your insurance company should have an appeal process. Another osteo med might work as well or nearly as well. You have options. Don't give up.

                      The health care system can seem very adversarial at times, and we have to fight for what we need.
                      Stephanie, age 56
                      Diagnosed age 8
                      Milwaukee brace 9 years, no further treatment, symptom free and clueless until my 40s that curves could progress.
                      Thoracolumbar curve 39 degrees at age 17
                      Now somewhere around 58 degrees thoracic, 70 degrees thoracolumbar
                      Surgeon Dr. Michael S. O'Brien, Baylor's Southwest Scoliosis Center, Dallas TX
                      Bilateral laminectomies at L3 to L4, L4 to L5 and L5 to S1 on April 4, 2012
                      Foramenotomies L3 through S1 in August 2014

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                      • #26
                        thanks, Sharon...
                        sounds complicated...
                        i have a head for social work/education/psych...not for science...

                        so i guess it is a good source for calcium...

                        jess

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