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Thread: Newly Diagnosed - First post - 13 year old girl with AIS

  1. #16
    Join Date
    Nov 2014
    Posts
    3

    Thank you all

    Hi

    Thank you again for all for reviewing and discussing different possible options.
    Ed,
    I saw the video and it looks like you seem to be good shape and health. Thank you for words of encouragement. THe surgeons I have met have done many scoliosis surgeries and thus seemed to be experienced and need to check to see if they are associated with SRS. One of the Orthos (who seemed young, may be has 10 years of experience) said she does multiple surgeries during the week especially during the summer given the school holidays.

    Thanks to Linda, A Mom on providing details on Medx TR, CTR and PT in general and I am not sure which one is classified as major curve and which one is compensatory, will ask the Ortho during my next visit. It is disappointing to learn that CTR may not help my daughter given that her major curve might be TL (the X-ray report says 49 deg for TL) but will explore PTR. I have uploaded the images below from X-ray taken about month ago.
    We are currently doing some Yoga (including a sideplank on her left hand (convexity side of her TL) and Schroth and I know these may not help but at least I do not want leave no stone unturned. Here is another detailed link on Side Plank

    https://yogainternational.com/articl...-of-side-plank

    A mom, I would really appreciate your input in suggesting appropriate exercises that might potentially help to stop the progression.

    We just started with a Brace last week and it is not easy at all for a 13 year old girl given the challenges it throws at you for daily continuous wear and reading/hearing about it here, it may not be effective but again I don't mind trying for few months to see if helps or not.

    Thanks to Emily, Pooka1, mariaf and coolblue for discussing on Tethering and I am exploring it but as said earlier, I want to exhaust all non-surgical options before seriously considering any surgery. Tethering seems like a good option given that spine is not fused and her Risser sign is 0 but seems too new given that less than 150 surgeries are done in the last few years.

    I know A mom mentioned to get an MRI, which I believe is normally recommended just before the surgery and was wondering if it would be any more detail than x-ray in my situation given that it is classic AIS curve and not atypical left thoracic or do not have any other neurological symptoms.

    Also, I wanted to get an opinion from experts here on potential link between Orthodontia and its effect on curve progression. My daughter wears ortho braces and if somebody says there is remote negative correlation between the 2, I do not mind removing her teeth brace, See the link below

    http://www.massagetoday.com/mpacms/m...e.php?id=13356

    I know some of you may not agree on Craniosacral therapy etc but you never know since docs seem to be so specialized these days that I feel like they might miss these remote connections.

    Again, thank you all for your valuable feedback and timely responses. If I missed providing any specifics that would help you to answer clearly, please let me know as it is possible I might missed answering something.

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    -Sam

  2. #17
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by saminD View Post
    I know A mom mentioned to get an MRI, which I believe is normally recommended just before the surgery and was wondering if it would be any more detail than x-ray in my situation given that it is classic AIS curve and not atypical left thoracic or do not have any other neurological symptoms.
    I am not sure how surgeons make the decision to order an MRI. I think you are correct that in typical AIS cases, there might be little to learn and so may not order it. As I think I mentioned, my one daughter had a typical thoracic curve but it was atypically high in progression rate so the surgeon ordered it. I always meant to ask what might have caused the high rate that would be fond on MRI and not radiograph. The other kid did not have one prior to her surgery. And in reading the testimonials, I think it is all over the place with respect to whether a surgeon orders a pre-surgery MRI.

    I think you are doing an excellent job getting up to speed and advocating for your daughter. :-)
    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. #18
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Quote Originally Posted by saminD View Post
    Thank you Emily for the suggestion. I will read up on Vertebral Tethering.
    If you would like to research Vertebal Tethering, I can offer some suggestions. The link in my signature refers to vertebral stapling, but that group has actually branched out to include many tethering families since more and more of these procedures are now being performed by a larger (but still relatively small) number of doctors. There is also a FB page which I'm not able to post a link to (I am a bit technologically challenged when it comes to things like that!), but it's called 'Vertebral Stapling and Tethering Support' so if you are a FB user, you can probably find it. If not, feel free to e-mail me (also see my signature for that info) and I'll try to do a better job of pointing you in a better direction. I could also send you the latest data/powerpoint on VBT (tethering). Best of luck.
    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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