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Thread: Tracking Curves Over Many Years

  1. #1
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    Tracking Curves Over Many Years

    Hi...

    A German scoliosis specialist is interested in studying progression of idiopathic scoliosis and adult degenerative scoliosis, over time. I've been asked if I can find individuals that fall into the following criteria:

    1) Have idiopathic scoliosis or adult degenerative scoliosis
    2) Have scoliosis films over at least a 20 year period
    3) Films should cover time periods that would make sense in a study (e.g., every 5 years or better)
    4) Never had surgery, or did not have scoliosis surgery until adulthood
    5) Are willing to let us borrow the films for the purpose of copying them (and potentially publishing them).
    6) Participants may be asked to answer a short questionnaire.

    I feel that this is an important study. If we get enough participants to actually undertake this study, it should be quite helpful to adults in making the decision about whether or not to proceed with surgery.

    We don't have the logistics worked out yet, but if you meet the criteria, please send an email to me at linda @ scoliosislinks.com (without the spaces). I'll be in touch once I know we can find enough individuals to make the study meaningful.

    Thanks!

    Regards,
    Linda
    Last edited by LindaRacine; 08-08-2009 at 12:40 AM.

  2. #2
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    I agree that would be very a very valuable study!

    There are plenty of folks who had scoliosis for years but may not have known (relevant to self-reported twins studies BTW) or told they didn't have to worry about it and therefore don't have radiographs over time.

    But hopefully they will get a critical mass of people for this study.
    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."

  3. #3
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    Moving this up to be sure it's being seen by folks. I haven't heard from anyone yet.

    --Linda

  4. #4
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    Linda

    Parting with past x-rays and sending them off to Germany with the possibility of losing them, isn't easy to do.

    I'm a possible, but my Chiro has all my films back to 1987, and I still need to go see him at some point.

    If I can scan them on a large scanner, I would do it. This will have to wait as I'm off to Hawaii, and wont be back till 09/15. I still need to thank Geish for the idea...... unfortunately, I wont see her out there.

    Regards
    Ed
    49 yr old male, now 59, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  5. #5
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    Quote Originally Posted by titaniumed View Post
    Linda

    Parting with past x-rays and sending them off to Germany with the possibility of losing them, isn't easy to do.

    I'm a possible, but my Chiro has all my films back to 1987, and I still need to go see him at some point.

    If I can scan them on a large scanner, I would do it. This will have to wait as I'm off to Hawaii, and wont be back till 09/15. I still need to thank Geish for the idea...... unfortunately, I wont see her out there.

    Regards
    Ed
    Thanks Ed. For the record, the films will be copied here in SF.

    Aloha!

  6. #6
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    Sorry...I don't fit the criteria I don't believe

    Always Smilin'
    Colleen

    1982 fused T2-L1
    pre op 45 - post op 33 (left thoracic)
    pre op 53 - post op 18 (right thoracic)

    recheck 2006
    right thoracic 57
    lower lumbar 34

    surgical revision April 28,2009
    revision T3-L1; new fusion L1-L4
    unsure of degrees at this point

  7. #7
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    Ditto here, Linda... I don't fit. Just letting you know it's being seen. I read it when it was first posted.
    66 and still heartbroken...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15
    2014 DXd w/CMT (type 2)

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

  8. #8
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    Unfortunately my earliest films are 2008!

    I hope you get some "takers". It would be a useful study.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  9. #9
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    Thanks for letting me know.

    If anyone thinks they MIGHT qualify, but have questions, please send me an email.

    --Linda

  10. #10
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    Hi Linda,
    I never knew I had a scoliosis until more than a year after disaster struck. I tried to get copies of an x-ray I had 20+ years ago and no luck, it had been destroyed. Since managed care, Doctors were discouraged to do x-rays for back pain. Even when I went to the ER by ambulance with severe pain, all I got was a shot of Demerol and a prescription for Percocet. Good luck getting enough people like myself with degenerative scoliosis.
    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.

  11. #11
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    Getting this up to the top again.

    Where are all those folks who have huge packets of xrays?

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