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Thread: spinecor

  1. #3901
    Join Date
    Oct 2009
    Posts
    89

    Update on Syd

    I have also not provided an update for quite some time. Syd was 23 degrees early 2009, and then 36 degrees October 2009. She started wearing the SpineCor November 2009. She was about 21 degrees in the brace.

    Then in 2010 we did two 2-week intense therapy sessions (CLEAR, Pettibon, etc.) with Dr. Sid in Manhattan (January, June) because he does this therapy and also recommends the SpineCor brace. We also started to see Dr. Betz in February 2010 regarding VBS (vertebrae body stapling). Syd was on the borderline of "staples only" vs "staples with a hybrid rod". He suggested she wear a Boston brace to hold the curve and maybe get some reduction before surgery. At this time Syd was down to about 30 degrees out of brace and about 13 degrees in brace with the Boston brace.

    Syd continued to wear the SpineCor brace to school and to play sports and the Boston brace at night. By June 2010 she was down to 24 degrees and no longer on the list to have surgery. Dr. Betz suggested we wait and see how well she does from the bracing.

    She continued wearing the two braces (in brace 23 hours per day). By January 2011 she was measured at 15 degrees out of brace and about 5 degrees in the Boston brace. Then in September she was still at 15 degrees out of brace. This was the first period of time (9 months) that her curve did not reduce. She was fitted for a new Boston brace but her in-brace correction was only down to 8 degrees. Our goal is to get her in-brace correction down to 0 degrees or better yet, an overcorrection (-5 degrees).

    It looks like with her high thoracic curve (T8) that it is difficult to get more correction with the Boston brace. We are now getting a Providence brace for night-time only so we can get an over-correction. Our theory (whether it is right or not) is to get her <10 degrees out of brace as soon as possible and it can only be done if we have some over-correction in the brace. We will be getting the new brace next week. Syd will continue to wear the SpineCor brace to school and to play sports, but will now wear the Boston brace whenever she is home, evenings and weekends, and she will wear the Providence brace at night.

    Like everyone else we are getting concerned with the potential growth spurt. Syd will be 11 in September.

    A couple of my concerns/thoughts:

    1. I am not confident the SpineCor brace can hold an aggressive curve through the growth spurt. I have seen several examples of girls going through the growth spurt and curve increasing to 40+ wearing the SpineCor. We are going to monitor Syd's growth and her curve very closely. Our goal is to be in a hard brace more often the next 2-3 years.

    2. The VBS surgery has the best results if performed before the growth spurt. It can be done during the growth spurt, up to about age 13 I think, but better results if done before. If Syd increases back to 20, 25, or 30 degrees we will strongly consider the VBS. Best results if done before reaching 35 degrees. And it can help with the rotation too.

    Thanks
    Michael
    Last edited by michael1960; 01-19-2012 at 07:22 AM.

  2. #3902
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,317
    Thanks for posting that. Bone fide evidence that curve reductions can occur in JIS due to bracing. In this case, 36* down to 15*, a whooping 58%. That is remarkable. There are other JIS cases here with very large reductions. Much better place from which to enter the growth spurt.

    Dr. Hey claimed bracing can be very effective in JIS and these testimonials are consistent with that.
    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. #3903
    Join Date
    Aug 2011
    Location
    Wales
    Posts
    245
    Quote Originally Posted by michael1960 View Post
    Our goal is to get her in-brace correction down to 0 degrees or better yet, an overcorrection (-5 degrees).
    Michael, thanks for that thorough update. You have done what we originally (6 months ago at diagnosis), felt we should do, viz., over-correct/significant correction overnight, SpineCor during the day, specific scoliosis exercise + general exercise daily. (I've posted all the details on our own NSF forum thread.) Succinctly, we tried a Charleston night-time brace, while waiting for the SpineCor and have done Schroth + an eclectic mix of other methods daily since June. The Charleston (very similar to the Providence) was badly made--we may try again, with a different orthotist; another alternative is having TWO sets of SpineCor bands, one for daily wear, one to achieve maximum correction overnight (I'll be discussing this with the head of SpineCor UK soon).

    It looks like with her high thoracic curve (T8) that it is difficult to get more correction with the Boston brace.
    A custom made Boston night-time system, if made to the correct King Classification, can correct and overcorrect a T8 curve. My daughter (Tamzin) also has a T8 thoracic apex; unlike your daughter, Tamzin also has a lumbar curve (currently around 25 - 27 degrees, we think!). In the Charleston (we suspect this was a 'beefed-up' Boston night-time system), we got a 15 degree correction (could have been significantly more if made properly...it was negligently made to a King 3 classification when a King 1 was unmistakably indicated). Derotation is incrementally more crucial the higher the curve.

    ...potential growth spurt. Syd will be 11 in September.
    Tamzin will be 11 in April.

    I am not confident the SpineCor brace can hold an aggressive curve through the growth spurt. I have seen several examples of girls going through the growth spurt and curve increasing to 40+ wearing the SpineCor.
    Our opinion is that it's very much down to the individuals concerned whether ANY brace results in lasting correction. We are convinced that concurrent exercise is crucial. As with you, we've read and heard about many failures, but also many huge successes. E.g., current UK gymnast, 38 degree thoracic curve, down to and holding at 0 degrees in a SpineCor, still pursues her gymnastics, 13 yr old. Our specific concern right now is to achieve more lateral correction than we achieved at the fitting of the SpineCor in Dec, 2011.

    It may seem overly optimistic, but we believe that with an admittedly rigorous exercise (my daughter is an exercise machine), enhanced proprioception and mentally supplanting postural correction over the scoliotic subconscious, significant correction can be achieved WITHOUT bracing. Our own negative experiences with the medical profession resulted in Tamzin being without any brace for 5 months since diagnosis; she corrected in this period. We are actually WARY of over-reliance on ANY brace diluting or dissolving her own corrections.

    Great to hear from you. Hugely impressed at the correction you've achieved so far with your daughter.
    Thanks
    Tom
    07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
    11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
    05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
    12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
    05/13: (12yrs) <25, >22cms height, puberty a year ago

    Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

  4. #3904
    Join Date
    Aug 2007
    Posts
    388

    are you still reading, christine 2?

    Christine2, I sent you a PM if you are still reading. Thanks!
    daughter, 12, diagnosed 8/07 with 19T/13L
    -Braced in spinecor 10/07 - 8/12 with excellent in brace correction and stable/slightly decreased out of brace curves.
    -Introduced Providence brace as adjunct at night in 11/2011 in anticipation of growth spurt. Curves still stable.
    -Currently in Boston Brace. Growth spurt is here and curves (and rotation) have increased to 23T/17L

  5. #3905
    Join Date
    Aug 2006
    Posts
    369
    I am your pm box is full
    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

  6. #3906
    Join Date
    Aug 2007
    Posts
    388
    oops! been so long that I sent a PM didn't realize it was full. i just cleaned it out.

    By the way, i see your April update in your signature. That is WONDERFUL that her OOB curve is holding at such a low level! While my daughter is still growing at a steady pace (as opposed to the fast growth spurt), I think it's around the corner as she is showing signs of maturity.
    daughter, 12, diagnosed 8/07 with 19T/13L
    -Braced in spinecor 10/07 - 8/12 with excellent in brace correction and stable/slightly decreased out of brace curves.
    -Introduced Providence brace as adjunct at night in 11/2011 in anticipation of growth spurt. Curves still stable.
    -Currently in Boston Brace. Growth spurt is here and curves (and rotation) have increased to 23T/17L

  7. #3907
    Join Date
    Aug 2006
    Posts
    369

    6 month check up

    My daughter had a out of brace x ray today. She has been in a TSLO night time for 6 mos & measured 8 *down from 18* at last visit!! Even though she is now in TSLO I give most of the credit to Spinecor. She grew 2 1/2 inches in the last 6 mos so we are in major growth spurt. We will cut down brace time and continue to monitor until she is out of her growing frenzy, she is 5'5" and 12 ys old. (My father was 6'6'') I hope every one else is well
    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

  8. #3908
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,317
    33* to 8* OOB. This is a 76% reduction! More proof bracing can reduce at least some JIS curves, again vindicating Dr. Hey's claim.

    Now we know bracing doesn't always reduce JIS curves but at least the number is not zero as in AIS.

    These testimonials are so valuable.
    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."

  9. #3909
    Join Date
    Mar 2010
    Posts
    1,976
    Quote Originally Posted by Pooka1 View Post
    More proof bracing can reduce at least some JIS curves, again vindicating Dr. Hey's claim.
    This Dr. Hey? https://www.heyclinic.com/conditions/treatments.asp

  10. #3910
    Join Date
    Sep 2005
    Posts
    195

    Update on Emily

    It has been quite awhile since I have posted here. Emily is now 15. She is a Riser 5 and has been for over a year. She was initially diagnosed at 5 years old with a 30 curve, as well as Chiari and Syringomyelia. She had a decompression surgery in 2004. Her curve went up and down repeatedly over the years. She wore a Spinecor brace for 5 years (aged 8-13). She never did any exercises or any other treatments. We stopped bracing 18 months ago when it was determined she had reached full skeletal maturity. At that time she measured 40 degrees. 6 months prior to that she was 43 degrees. Today we had our 1 year check. As unbelievable as I find it, she was at 38 degrees!! She has remained with a 5 degree margin for 18 months.

    If anyone would have told me 10 years ago that my daughter would be able to avoid a fusion surgery, I would not have believed it. I barely believe it now. There is no question that her decompression surgery initially improved and stabilized her curve. However, had she not been braced during her adolescent growth spurt, she would have reached the 50 degree mark. That I know for a fact. She wore her brace religiously for 20 hours a day at least. I hope that our story helps others
    Emily's mom-11 1/2 years old
    28 degree scoliosis 9/04
    Chiari Malformation/SM decompressed 11/04
    17-24 degrees 11/04-6/07
    Wearing Spinecor Brace since June 07
    3/31/10- 29 degrees oob
    11/18/09 17 degrees in brace

  11. #3911
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,317
    Very great news! What a long haul. Congratulations to your daughter and you! There is hope for JIS/Chiari/Syringomyelia. This testimonial is so valuable to other parents dealing with this.

    Quote Originally Posted by emarismom View Post
    It has been quite awhile since I have posted here. Emily is now 15. She is a Riser 5 and has been for over a year. She was initially diagnosed at 5 years old with a 30 curve, as well as Chiari and Syringomyelia. She had a decompression surgery in 2004. Her curve went up and down repeatedly over the years. She wore a Spinecor brace for 5 years (aged 8-13). She never did any exercises or any other treatments. We stopped bracing 18 months ago when it was determined she had reached full skeletal maturity. At that time she measured 40 degrees. 6 months prior to that she was 43 degrees. Today we had our 1 year check. As unbelievable as I find it, she was at 38 degrees!! She has remained with a 5 degree margin for 18 months.

    If anyone would have told me 10 years ago that my daughter would be able to avoid a fusion surgery, I would not have believed it. I barely believe it now. There is no question that her decompression surgery initially improved and stabilized her curve. However, had she not been braced during her adolescent growth spurt, she would have reached the 50 degree mark. That I know for a fact. She wore her brace religiously for 20 hours a day at least. I hope that our story helps others
    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."

  12. #3912
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    That is such wonderful news and will give hope to many!!!

    I think I recall being told once that for patients who undergo successful decompression surgery for chiari that those curves tend to stabilize afterwards. It was a long time ago and my memory isn't crystal clear on this, but your post made me wonder if that could be true. In any event, a big CONGRATS to you and your daughter for completing this long journey successfully!!!
    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/

  13. #3913
    Join Date
    Mar 2010
    Posts
    1,976
    Quote Originally Posted by emarismom View Post
    If anyone would have told me 10 years ago that my daughter would be able to avoid a fusion surgery, I would not have believed it. I barely believe it now. There is no question that her decompression surgery initially improved and stabilized her curve. However, had she not been braced during her adolescent growth spurt, she would have reached the 50 degree mark. That I know for a fact. She wore her brace religiously for 20 hours a day at least. I hope that our story helps others
    Great!. I agree what you said about the Spinecor, a great invention really. I think it should not to be called as a brace, since probably is following other principles, but anyway sure follows also the principle behind braces and we really may says those principles works!
    Congratulations!

  14. #3914
    Join Date
    Sep 2005
    Posts
    195
    Yes it has been a long haul! At 5 years old with a 30 degree curve, it did not look good, that is for sure!!

    Maria, decompression surgeries do tend to stabilize a Chiari related curve, and in Emily's case it did stop the progression of the curve for many years. I braced her because I knew that there was still a high risk of progression. Her curve did progress, we were just very lucky it did not get to the surgery range. I attribute her making it through puberty without reaching surgery range to the Spinecor Brace, not the surgery as the surgery was done in 2004. In 2010-2011, the curve was getting worse, but she was braced.
    Emily's mom-11 1/2 years old
    28 degree scoliosis 9/04
    Chiari Malformation/SM decompressed 11/04
    17-24 degrees 11/04-6/07
    Wearing Spinecor Brace since June 07
    3/31/10- 29 degrees oob
    11/18/09 17 degrees in brace

  15. #3915
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    Whatever was responsible for her success, it is super wonderful news!! I am a believer that sometimes it takes 'many tools in the toolbox' to control scoliosis and avoid fusion. For example, certain kids wear nighttime braces following VBS in order to aid growth modulation in cases where it is needed. Some doctors look at it as added insurance.

    Again, congratulations!
    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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