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  • our story and some more questions

    As I mentioned before, my daughter is 10 and definately prepubescent.

    We started in October. At a physical, our pediatrician thought he noticed some scoliosis. We were sent for x-rays and the results were what he said was a 7 and 9 degree curve respectively.

    At our recheck in April, the doctor said the x-ray showed about 19% and referred us to the orthopedic department.

    The orthopedic doctor reviewed our x-rays at the end of May and sent us for a brace.

    I found out this last week that my company was switching insurance carriers and I would be needing to find all new doctors. Thankfully, the orthodic company was able to work with both insurance companies.

    I emailed the orthopedic doctor and let him know that I was going to be switching insurances and could he recomment someone. He was kind of brusque and gave me a few names. (possibly I misunderstood the tone of the email?). I thanked him and asked him what he found the curves to be. I was curious how close her pediatrician had been. His reply was that he only review them and found a 'significant' change and referred us to the orthodic company.

    First question: has anyone had a doctor just say that there was change and not actually do a degree measurement?

    Second question: in all of your unprofessional but experienced opinions, was her change significant?

    Third question: is there anyone who is dealing with Shriners in Portland? The doctor on my new plan is located there. I am in the application process and am wondering how long it took to go through the review process.

  • #2
    Portland area pediatric orthos

    Hi,

    Welcome to the list, you will find lots of info and knowledgeable people here. Sorry to hear about your daughter's scoliosis. My 6 y/o daughter was diagnosed in January 2008 with a 26 degree curve (we were origianlly told 30) and we were referred to Dr. Barmada in Portland. His partner is Chris Achterman. We did lots of research in the meanwhile desperately searching for an alternative to years of bracing and a high probability of fusion. I can give you more info about Dr Barmada if you want, just send me a PM.

    We learned of vertebral body stapling and got in touch with Maria F who I am sure will post here soon. There is a great website about VBS at www.vertebralstapling.com. We have info about VBS and also a discussion forum that is wonderful. We travelled to Shriners in Philadelphia from the Willamette Valleyarea and plan for our daughter to hopefully have VBS next year. Shriners in Portland does not do this surgery, but we transferred our daughter's care there for now since we needed someone in Oregon.

    I have heard recently the wait is 4-6 months to get in to Portland. We were able to transfer in very quickly after we were seen in Philly. We have seen Dr d'Amato twice now, I would be happy to tell you more in a PM. My impression is he is very pro-bracing. Long term bracing is very difficult for us to consider for our daughter since I was braced myself and didn't enjoy it.

    IMHO your orthopedist needs to tell you the measurements. A jump of 10 degrees is a significant progression. But meanwhile, I would try hard to get your daughter in to see a PEDIATRIC orthopedist. You mentioned your insurance covers Shriners, but Shriners is actually free of charge.

    Good luck, you can send me a PM if you want to chat more about scoliosis care in Portland.

    Gayle
    Last edited by leahdragonfly; 06-06-2008, 03:15 PM.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

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    • #3
      Originally posted by ksflynn5
      First question: has anyone had a doctor just say that there was change and not actually do a degree measurement?
      No. That said, estimating a change (in this case about 10*), even by eye, might be sufficient to pull the trigger on referring you to a pediatric orthopedic surgeon given that the next guy will do the measurements and compare them to the original measurements on file. The circumstances matter, as usual.

      Originally posted by ksflynn5
      Second question: in all of your unprofessional but experienced opinions, was her change significant?
      It's significant *IF* it is a "large," measurable change under the circumstances (time period, child's age, etc.) that are known to be significant in terms of future progression.

      In other words, I don't know and only an experienced pediatric orthopedic surgeon (I'm going to use the acronym, "EPOS" in the future I think!) would likely know. And not all of them might know.

      The research on this stuff is wanting as far as I can tell. Even if you have a parent come along with a testimony close to that for your daughter, it still could have a different outcome. I am sitting here with identical twins who so far have had very different scoliosis trajectories.

      Good luck.

      sharon
      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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      • #4
        I wonder why. Scoliosis seems to be getting common among children now. Not like in earlier generations.
        The secret to creativity is knowing how to hide your sources.
        eve isk

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        • #5
          Originally posted by joelpietersen View Post
          I wonder why. Scoliosis seems to be getting common among children now. Not like in earlier generations.
          A small part of the reason could be that more children are being diagnosed. For example, I have family members (aunts, cousins) who found out - as adults - that they had scoliosis (mild to moderate) but none were diagnosed as children. Nowadays, there is more screening, etc.

          Just a thought..........
          mariaf305@yahoo.com
          Mom to David, age 17, braced June 2000 to March 2004
          Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

          https://www.facebook.com/groups/ScoliosisTethering/

          http://pediatricspinefoundation.org/

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