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Thread: Diagnosis...kinda looking for answers

  1. #1
    Join Date
    Sep 2005
    Location
    Florida
    Posts
    8

    Diagnosis...kinda looking for answers

    I posted on here quite a few months ago about my then 7 yr old daughter being diagnosed with scoli. We took her to shriner's for another opinion and they said she didn't have scoliosis and it was poor posture. I wasn't satisfied with that so I took her back to a pedi ortho for another opinion and he ordered an MRI, once that was done we found out she has a cyst on her spine....very small and shouldn't affect her. We also found out she was born with a weak spot in her back and that is what is causing her scoli.

    I now have about 100 questions for the doctor and we dont see him again til March. But my question for you all is has anyone else's child had this diagnosis and if so what's the outcome been? Also should we go back to the shriner's now that we have a definte diagnosis?

    Thanks
    Julie
    'May We Never Forget'
    The Hero's of September 11, 2001
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    Julie
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  2. #2
    Join Date
    Jan 2007
    Posts
    65

    Shriners

    Hi,

    Spencer does not have a cyst and his whole spine was weak, not just one spot, so I don't think I can really say much about your diagnosis, but it sounds like you have finally got some good docs looking into it. You may want to stick with them for now.

    We are, however, patients at Shriners SLC, and I have to say that we have had unbelievable care there. The pedatric ortho docs have really been incredible, and since they team with the local children's hospital for clinic we also see nuero, pediatrician, and physiatry docs at Shriners on clinic days. I dont know if this type of clinic is done at other Shriners and it sounds to me like you need either a pediatric nuerosurgeon or neurologist who has had experience with scoliosis and cysts looking at your MRI's and tracking your daughter. You need to go where your daughter can get the best care and where you feel the most comfortable.

    I'm glad you have finally got some answers and can now make plans on how to treat your daughter's conditions. Keep us posted.
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

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