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Thread: Juvenile idiopathic scoliosis and spinecor

  1. #1
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    Question Juvenile idiopathic scoliosis and spinecor

    Hi, my daughter just turned 7 and currently is in a Providence brace. She was diagnosed about 4 months ago with a 25 degree mid-thoracic curve. She is tolerating the Providence fine, and we soon will go for her first out of brace xray to see how it's going. In the event things are getting worse, I am doing research now into alternatives. Does anyone have experience they can share with the Spinecor brace for kids this young? The company's studies all deal with AIS, not juvenile. We live in the DC area and the posts I've read all seem to suggest that Montreal or a doctor in NYC (I forget the name), or maybe Shriners are the best places to go for Spinecor. Shriners obviously is closest to us but any thoughts on that? Thanks!

  2. #2
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    I don't think Shriners (any of them) will do Spinecor ... could be wrong.
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  3. #3
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    Hi,

    My daughter uses Spinecor but we are in CA. Try posting under bracing and then under spinecor. Someone on there will probably know something. Good luck.

    kathy

  4. #4
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    The question was whether Shriners (ANY Shriners) does Spinecor ... and I'm fairly sure the answer is NO.

    Call and ask other docs if you wonder. My doc is also a SRS/Shriners doc and thinks Spinecor is not worth his time - even with a trained orthotist. Make your own deductions. SC is just *another* brace.
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  5. #5
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    Quote Originally Posted by Jenmom View Post
    Hi,

    My daughter uses Spinecor but we are in CA. Try posting under bracing and then under spinecor. Someone on there will probably know something. Good luck.

    kathy
    I agree that she might get more responses if she posts this in the Bracing section of the Children's area.

    W.R.T. the Spincor thread, folks do have it flagged and are notified when a new post arrives. Maybe that's why it continues to grow. Still, I would start a new thread. Other threads manage to be seen without being flagged at first.
    Last edited by Pooka1; 10-27-2008 at 08:00 AM.
    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."

  6. #6
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    Hi

    My daughter started in Spinecor at age 6. We have had excellent results with it. I would definately recommend going right to Montreal, there are some issues with proper fitting of the brace. There are docs and chiros out there that are not properly trained to use Spinecor which have resulted in problems.

    As the others have said you may want to go to the spinecor thread for a ton of info.
    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. #7
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    Hi Christine2,

    Are your daughter's numbers (in your signature) in brace or out of brace? I'm not sure how Spinecor monitors progress. Also, how often does she go to Montreal? Just to see the doc or for fitting/adjustments as well? Realistically, I think it would have to be a plane flight for us. I see recs re: Dr. Deutchman in NYC as well--thanks
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  8. #8
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    Last year when I was looking into it, Shriners in Erie PA was the only Shriners Hospital that did Spinecor. However, I have read that Dr. Sanders (the doctor who was prescribing it) has left Erie and gone into private practice in Rochester, NY. I don't know who replaced him and whether they still use spinecor, but you could call Shriners Erie to find out. (we go to Montreal for treatment so I don't know what Erie is currentl doing)

    Good Luck with your decisions.
    Last edited by jillw; 10-27-2008 at 09:16 AM. Reason: added
    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

  9. #9
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    The measurements are all in brace. Jillw gave an excellent explaination about x rays on the Spinecor thread you should read that. We go every 5 months, we drive and it takes us around 7 hours one way. I have not looked at airline tickets lately but each time we go we make a mini vacation out of it. I would imagine when all is said and done it would probably be close in cost to flying.

    BTW We are finally going to get our passports taken care of next weekend. It is going to be expensive but I will feel better about having them.
    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

  10. #10
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    ny
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    Quote Originally Posted by txmarinemom View Post
    The question was whether Shriners (ANY Shriners) does Spinecor ... and I'm fairly sure the answer is NO.

    Call and ask other docs if you wonder. My doc is also a SRS/Shriners doc and thinks Spinecor is not worth his time - even with a trained orthotist. Make your own deductions. SC is just *another* brace.
    I think you are correct, Pam - I could be wrong, but to my knowledge there isn't anyone at any of the Shriners Hospitals who prescribes Spinecor.
    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/

  11. #11
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    Oct 2008
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    jillw, christine2, and jenmom,

    I'm just curious--your kids (I think) are or were all young juvenile patients. Did any of you try the Providence brace, or was it not suited to your kids' curves? I had read before we had our first appointment for our daughter that it was promising for juvenile patients and I was so relieved when our ortho prescribed it as it meant night-time only (I know things can change). I was surprised not to see it mentioned at all in the Spinecor thread (OK, I skipped around a little) as something that people considered/tried, etc. My daughter does not LIKE it (who would) but she wears it without real discomfort or complaint--just minor irritations that we have been able to address without too much problem--and sleeps like a log in it. Though she has not had the first out of brace xray, I was encouraged that our doctor seemed pleased with the inbrace correction. I like our orthotist a lot as he seems genuinely concerned about how she does. He seemed very determined at her last visit to get her in-brace correction down to pretty much 0 degrees. Just looking for some context, I guess, as I look around to see what are options are should the Providence not work for her. Thanks
    Last edited by mamandcrm; 06-08-2009 at 03:29 PM.
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  12. #12
    Join Date
    Aug 2007
    Posts
    388
    Mamandcrm, Providence brace was definitely something I looked into but it didn't gather much steam in our case. We met with several orthopedists and were given different advice from no bracing; just monitor until it hits 20degrees and then brace 23/7 in a Milwaukee brace (because of her age they were afraid of rib deformities if in a TLSO) on the one hand to immediately bracing 23/7 in a hard brace. We settled on a middle ground. I also viewed Providence as a "middle ground". One of the orthopedic surgeons (the milwaukee guy) felt my daughter wouldn't be an ideal candidate because of the placement of her primary curve (apex approx t9). He said providence had better results with the lower curves. I called Shriners in Portland Oregon where one of the Dr.'s who was involved in inventing the Providence brace is currently located to see what their thoughts were with regards to my daughter. They were very luke warm and basically said that given how young she is and the risk of progression they would probably recommend full time bracing (of course they couldn't give a definitive opinion without actually seeing my daughter, that was just their sense based on the info I provided). Keep in mind that I didn't speak directly to the doctor - I spoke to the physician's assistant who seemed very knowledgable as to how they handle situations like this there. Given that, I ended up going with spinecor to see how that worked. If it didn't work, I'd probably have delved into Providence or some other nighttime bracing more.

    If my daughter had been started off in a Providence and was getting a good in brace correction, it held her curve stable and she found it tolerable, I probably would have stuck with a Providence - at least in these years before her peak velocity growth spurt.
    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

  13. #13
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    Oregon
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    peak velocity growth spurt

    Just curious, when approximately does the peak velocity growth spurt occur? Is there a particular age range, or is it related to Risser score?

    Thanks,
    Gayle, age 49
    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)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

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

  14. #14
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    NorthCarolina
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    Peak velocity growth info taken from http://www.usc.edu/student-affairs/H...ontent/a1.html

    The beginning of the increase in growth velocity is about age 11 in boys and 9 in girls but varies widely from individual to individual.

    The peak height velocity occurs at a mean of 13.5 years in boys and 11.5 years in girls.

    Pubertal growth accounts for about 20% of final adult height, a total averaging 23-28 cm in females and 26-28 cm in males.

    The average growth spurt lasts 24-36 months.

    Growth during the year of PHV in the normal female averages 9 cm/yr and varies normally from 5.4 cm to 11.2 cm. In the normal male, the PHV averages 10.3 cm/yr and varies normally from 5.8 cm to 13.1 cm.

    Males on average are 12-13 cm taller than females primarily because of the 2-year delay in bone closure as compared to females. This accounts for about a 10-cm difference between the two sexes; in addition, males also have 2-3 cm more of growth during their growth spurt.
    Mom to Haley, 13.5 yrs old
    Diagnosed at 6 yrs old - 18T.
    Boston Brace at 9.5 yrs old - 34T/18L
    Switched to SpineCor at 10 yrs old
    Stable at ~22T OBX until 12.5 yrs old
    Adolescent growth spurt was brutal - scheduled for surgery Dec 7th.

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