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Thread: spinecor

  1. #3676
    Join Date
    Aug 2006
    Posts
    369
    Hi Pat

    WOW light at the end of the tunnel, I am SOOOO jealous!! 12* is awesome! It will be so worth the work your family has done. Just put your head down and go for it.

    Lots of congrats.
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  2. #3677
    Join Date
    Dec 2004
    Posts
    236
    Hey Christine!!! Jill, until you'd asked, I almost forgotten how far we've come. . . I had to check back into the archives. Just about four years ago, she was diagnosed with a 20 curve at age 12, brace brought her down to a "7," and four years later, and 10 inches taller, she's a "12" in brace. We braced her with a low number of "20," because her sister had spinal fusion.
    p

  3. #3678
    Join Date
    Aug 2009
    Posts
    10

    Newly diagnosed 4 yr old girl (25 deg)

    Is spinecor right for her?

  4. #3679
    Join Date
    Aug 2006
    Posts
    369
    JillP

    There are alot of treatment options availible. Has your daughter had an MRI yet? Try to read through the forum for some ideas. that is how I started after my daughter was diagnosed.
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  5. #3680
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    Hi Jillp,

    To add to the good advice above, I would suggest that you to get an opinion (maybe a few opinions) from a pediatric orthpedic surgeon who see lots of younger kids with scoliosis - not someone who treats mainly teenage patients.

    Scoliosis in a 4-year old is much less common than scoliosis in an older patient, and therefore not all doctors are used to seeing patients who are this young. The treatment of juvenile cases sometimes requires more expertise in this specific type of scoliosis in order to get the best outcome.

    Depending on where you live, I'm sure you can get some good dr. recommendations here.

    Best of luck to you.
    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/

  6. #3681
    Join Date
    Aug 2006
    Posts
    369
    well said Mariaf
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  7. #3682
    Join Date
    Aug 2009
    Posts
    10

    4 year old newly diagnosed

    Thanks, I have not had an MRI, just an X-ray. Do I really need the MRI? Hate to do that to a 4 year old. I have spoken to Janet at Shriner's Philly and she got me in for next week so I am going to talk to her and Dr. Betz. Janet has been great to me. I have also spoken with Dr. Rivard in Montreal just today. He sounds great too. I guess I'm just confused with all of the different options, and is there an option closer for me to Hartford area than Montreal or Philly? CCMC? Boston? Also confused on how Dr. Rivard can say my daughter is a good fit for the brace when he hasn't even seen the x-ray. Also confused if Dr. Sid in NYC is any good for spinecor bracing? I will go anywhere for my daughter...just confused on who is the best to start with for someone so young. Help?

  8. #3683
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    Hi Jill,

    Unfortunately, I think that any good doctor will tell you that you do need an MRI to rule out any underlying causes of her scoliosis (since she is so young). It really is necessary. My son had an MRI when he was even younger than your daughter and he did fine. They did sedate him but it was something very mild just to put him to sleep. There will be a pediatric anesthesiologist there who is well trained in these things.

    We live in NYC (not that far from Hartford, relatively speaking I guess) and have found the best care, IMHO anyway, at Shriners in Philly. That said, you should feel free to get a few opinions and hopefully as time goes on it will become clearer what you should do. It is very overwhelming at first I know. Feel free to email me as well with any questions or if you just want to chat.

    (and yes, Janet is awesome!)
    Last edited by mariaf; 08-24-2009 at 10:32 PM.
    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/

  9. #3684
    Join Date
    Mar 2006
    Location
    DFW, TX
    Posts
    159

    MRI could be recommended

    Jill P-I agree that an MRI to rule out any spinal cord issues is something that I would certainly ask your doctor about, and see if it is a consideration. If they order one then it sure won't hurt to be sure. It took a third doctor for a 3rd opinion from a pediatric orthopedic surgeon to be the first to recommend it, and wish the others had done 9 months earlier, as my child did have a medical condition we were unaware of with her spinal cord. My youngest daughter (who doesn't have scoliosis) had to have an MRI when she was about 3 or 4 to rule out or determine other possible medical issues. I held her and she was sedated rectally and she didn't seem to feel more than a slight discomfort and almost immediately was asleep. It was really no big issue and she did fine other than mentioning she didn't like them making her wear a "pull-up" just in case she needed it. As they don't have control when sedated. My older daughter was 12 and not sedated and did fine. Best wishes.
    Last edited by Mom37; 08-26-2009 at 11:38 PM. Reason: add
    Shirley
    Mom to Amanda, 18, Scoliosis T58, previous Spinecor bracing for 9 months before diagnosed with Chiari I CM, and Syringomyelia (Syrinx) SM. CM/SM decompression surgery 12/4/06, Spinal fusion surgery with titanium rods and hardware and full correction 8/1/07 at Texas Scottish Rite Hospital for Children.

    Also mom to Megan, 14, with diagnosis PDD-NOS on the autism spectrum

  10. #3685
    Join Date
    Aug 2006
    Posts
    369
    JillP

    I was also nervous about sedating my daughter for her MRI. But it turned out that the whole procedure was easier than I thought. I am very happy we did it, if we had not,it would have always been on my mind.

    We just got back from D.C. what a awesome trip. We were able to see the preperation for Senator Kennedys funeral at Arlington cemetary. The kids will never forget that. The US lost a very important political figure. I just hope someone will follow in his footsteps.

    It was very hot in the city, my daughter had alot of out of brace time. Our next appt. is in October so its back to compliance for now.
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  11. #3686
    Join Date
    Mar 2009
    Posts
    1,090
    Hi Pat,

    Congratulations on your daughter's results! I'm curious about when the Spinecor people start taking out of brace x-rays so it can be seen what the true curve is? At what point do they wean the kids off the brace, or do they recommend continuing to wear the brace after maturity? Thanks for the info.

  12. #3687
    Join Date
    Aug 2006
    Posts
    369
    My daughter saw the Orthotist at one of our Orthopedic docs yesterday. She is very impressed with the Spinecor and has started to use it. We see her so she can follow my daughters case.

    The orthodist was fasinated with my daughters progress. She checked for rotation out of brace and it was between 2-3.
    Awesome!!

    We will get an out of brace x ray when we see Dr Rivard in October. Fingers Crossed. That will be a nerve racking time!!
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  13. #3688
    Join Date
    Sep 2009
    Location
    Wisconsin
    Posts
    184
    Hi,

    Newly diagnosed 13 yr old girl with scoliosis T25 learning more each day...we finally see the orthopedic surgeon tomorrow with more radiographs.

    Really interested in the spinecor brace...it looks progressive in bracing.
    We apt with Ortho, then Schroth PT and finally chiro who specializes in spinecor.
    Tom Pappas D.C. Anyone seen him he is scoliosis specialist for the midwest?
    http://www.scoliosis.org/forum/showthread.php?p=21453

    I am interested in seeing if you had good results.....started reading this forum on p 22 and I realized it was only 2006 and most of those peeps graduated....except some of you are still here...and its great to see your outcomes...please do share....Would you use Spinecor all over again?
    age 15
    Daughter diagnosed at age 13
    T20 l23 10-09
    T27 L27 1/2010

    T10 L 20 in brace 4/2010
    T22 L25 12/2010 out of brace
    T24 L25 7/2011 out of brace

    Type 1 diabetes- pumping
    Wearing a Boston brace and Schroth therapy
    Faith, Hope, and Love- the greatest of these is Love


  14. #3689
    Join Date
    Aug 2006
    Posts
    369
    We are back from out appt. Out of brace X ray was 11* not bad but I was secretly hoping for another 1* reading. I was hoping she could come out of brace for a year. Gotta tell you all that this traveling 7 hours one way to Canada for appointments is getting old BUT I will buck up and do what I think is best for my daughter. I checked out airfare again. $700 $800. per person, I could fly my whole family to California for that price!

    My goal all along is to keep my daughters curve as low as possible now, so that we can stay below 20* during the growth spurt. Dr Rivard asked us what we wanted to do, My daughter was included in the whole discussion and it was unanimous, stay in brace till the end of growth.

    Pat
    Are you out here!!!
    I think you said your family flys, am I missing something for decent pricing?? Which airline do you use?
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  15. #3690
    Join Date
    Oct 2008
    Posts
    78
    Christine, I flew once in June for $300.00 per person round trip - it was Air Canada
    from Boston, MA, USA

    9 y.o. daughter
    07/08 - diagnosed with L23
    10/08 - wait and see: L25
    11/08 - Spinecor: L15
    01/09 - Spinecor: L15
    06/09 - Spinecor: L14
    11/09 - Spinecor: L14
    04/10 (Out-of-brace): L30-T30
    08/10 - out of Spinecor
    01/11 (Out-of-brace): L42-T30
    02/11 - Rigo-Cheneau and Schroth

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