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  • fibrous dysplasia?

    Hi everyone,

    I am just over 9 months post-op and my back is generally doing very well. Last week, however, I went in for an MRI because I've been having so many tailbone/left hip problems and they found a bone lesion on my femur. It is NOT cancer (!!!!) Has anyone been diagnosed with fibrous dysplasia (symptoms include bone lesions, scoliosis, skin pigmentation, thyroid problems, among others)? I'm still waiting to hear from my doctor what the next step is.

    If I can get through back surgery, I can get through anything, right? We are survivors.
    Thanks,
    Anya
    "You must be the change you want to see in the world."

    Previously 55 degree thoracolumbar curve
    Surgery June 5, 2007 - Dr. Clifford Tribus, University of Wisconsin Hospital
    19 degrees post-op!

    http://abhbarry.blogspot.com

  • #2
    Anya,
    I don't have fibrous dysplasia, but I was diagnosed with a benign bone tumor in my right Femur in 2004. They classify mine as a 'non ossifying fibroma'. It was an accidental finding after a knee injury playing volleyball. I saw an orthopedic oncologist and did not need a follow up unless I had any problems. Apparently this type of tumor resolves itself with time (they were able to see the old outer boundaries and where it was at the time).
    Are you going to be referred to an orthopedist who specializes in FD? Hopefully the lesion is not very big and wont require treatment, or maybe you can get away with just taking medication? Good luck and keep us posted.
    Curvy

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    • #3
      hardware affects x-ray interpretation of other disorders

      I am always suspicious with x-ray findings. I've been misdiagnosed several times because of all the glare, also called artifact, from my spinal hardware.

      My experience:

      I went to the emergency room with severe abdominal pain about 2 years post-op. The ER radiologist(a radiology resident no doubt) read my x-ray. He diagnosed me with a "renal artery clot"!!! They insisted I start on blood thinners and be admitted to hospital. Now-- I do not have any risk factors for such a disease.(for example-Lupus or an inherited clotting disorder). I insisted on a urology consult. Ultrasound of the kidneys showed no such disorder. I really had a gallbladder attack!!!-but the spinal screws looked like a clot and the gallstones were not visible-they showed on ultrasound.

      My suggestion is have other test to confirm the diagnosis.
      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
        Anya--just want you to know I'm thinking of you as you face yet another challenge. You are such a strong person-- and YES, you've been through the big surgery, so you can handle whatever this may bring. We ARE survivors! Hang in there-- and keep us posted! Hugs.
        71 and plugging along... but having some problems
        2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
        5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
        Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

        Corrected to 15°
        CMT (type 2) DX in 2014, progressing
        10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

        Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

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        • #5
          Karen,
          Seeing as how her lesion is in her FEMUR, I doubt that her spinal hardware is causing artifacts down that far on the films. As i'm sure you know (working in the industry) many times a person will go in for one test and have an incidental finding in another (connected) area of the body.

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          • #6
            Thank you for all your replies. I really appreciate them. I'm still not sure what is going on with the femur lesion, but I will keep you updated. I need to figure out if that is what is causing my pain, and I wish they could figure out why my tailbone has caused relentless pain for the last 7 months.
            Hope all is well. I appreciate your advice and support.
            Best,
            Anya
            "You must be the change you want to see in the world."

            Previously 55 degree thoracolumbar curve
            Surgery June 5, 2007 - Dr. Clifford Tribus, University of Wisconsin Hospital
            19 degrees post-op!

            http://abhbarry.blogspot.com

            Comment

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