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Thread: Saint Josephs Oratory

  1. #1
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    Saint Josephs Oratory

    OK, so we went to see our “local” doctor. I mentioned him in another thread, he’s not really local but a lot closer than Montreal. He’s an SRS member and participates in the BrAIST trial.

    My daughters curve was 38 degrees when first diagnosed in November. Dr. Rivard said it was 38 in January during our initial out-of-brace x-ray. My daughter wore the SpineCor for almost 3 months until we became disillusioned with it.

    We went in today because we were considering the Providence Brace and the doctor wanted to get out-of-brace xrays and another hand xray to assess skeletal age.

    Well, long story short, she was measured today as 34 degrees! We were NOT expecting THAT.

    That Cobb measurement was very encouraging. Equally encouraging was the progression of her skeletal age as assessed from the hand x-ray (indicates she is well past PHV and almost done growing – regardless of her Risser 0 - she is 14 and 1 year post menarche). The reduction/difference in Cobb angle is likely related to things discussed in the “Margin of error” thread. To me, it suggests her curve is not progressing which makes me question the logic of bracing her. Indeed, look for CD over at the “watching and waiting” forum because we are not going to put her back in a brace.

    I see now why this BrAIST trial is going on and why they are using 50 degrees as an end point. Had my daughter come in after 2 years of bracing and been measured as 34 degrees we would have been singing the praises of the SpineCor (or whatever brace). I personally doubt the reduction can be attributed to wearing the brace for the 3 months, but who knows. It is just as likely due to the candle I lit at St Josephs Oratory

  2. #2
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    Great!

    I LOVE to hear good news...
    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

  3. #3
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    A w e s o m e n e w s!

    Awesome news!

    It gives me hope for my son.

    I wouldn't totally count out the effect of the brace. At the very least it appears your daughter didn't progress. I don't know a lot about Spinecor but some moms have had amazing luck with it. I think Celia's daughter from the Infantile_Juvenile board is down to 2 degrees!
    Last edited by Dingo; 04-02-2009 at 06:07 PM.

  4. #4
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    That's great news, CD!!! I'm very happy for you. Although there is a 5 degree margin of error, it's always good to hear a LOWER number

    Perhaps your daughter's curve is NOT the progressive type after all - that's what I will be hoping is the case.
    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/

  5. #5
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    Quote Originally Posted by concerned dad View Post
    Well, long story short, she was measured today as 34 degrees! We were NOT expecting THAT.
    Super news, CD! I hope it stays stable like that.

    I see now why this BrAIST trial is going on and why they are using 50 degrees as an end point. Had my daughter come in after 2 years of bracing and been measured as 34 degrees we would have been singing the praises of the SpineCor (or whatever brace). I personally doubt the reduction can be attributed to wearing the brace for the 3 months, but who knows. It is just as likely due to the candle I lit at St Josephs Oratory
    Don't rule out the power of no prayer whatsoever by millions of people! Just me not praying saved my horse from certain oblivion, for example.
    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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    Dingo,
    You may be interested to see a link Sharon posted a few months ago.
    I guess I didn’t realize the significance of what she was saying at the time. Mostly because the study she cited was heavily weighted with small curves. However, since your son falls into this cohort, I thought you might be interested. As for our case, we will not know why my daughters curve decreased (likely just measurement inaccuracies), you may be fortunate and see your son fall into the 85% group that didn’t progress. I trust you will be careful with your attribution of the reduction should it occur (could be melatonin, could be Sharon NOT praying for you, could be just the natural course of the condition).

    She said
    I stumbled across this when looking for some progression curves...

    Heary and Albert, p.95 (bottom right)

    A 5-year prospective study of 85,622 kids found 1,436 kids with scoliosis.

    Results over an average observation of 3.2 years:

    Progression - 14.7%
    Spontaneous improvement of at least 5* - 27.4%
    Complete spontaneous resolution - 9.5%

    Here is yet another reason why controls are needed. About twice as many kids improved compared to the kids who got worse. And significantly, almost 10% of the kids in this study had a complete spontaneous resolution of the scoliosis.

    Had they happened to be enrolled in a Spinecor study at the time, these spontaneous improvement and resolutions would have be chalked up to the efficacy of the Spinecor brace. The bracing literature that doesn't address controls is clearly part of the reason why most published research results are false.

    We can't assume that any child in a Spinecor brace would not have completely resolved on their own absent the brace.

  7. #7
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    Wow, what an amazing insight

    concerned dad

    Those numbers are amazing. I had no idea that so many kids naturally healed themselves.

    You are right, with those numbers it makes it really hard to know what is going on.

  8. #8
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    Well yes it is hard to know what is going on without controls. This one point goes a long way towards making the bracing literature the near-total miasma that it is.
    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. #9
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    Re: the referenced study, would one of you who have access to the full citation post the initial curve measurements for the study group?

    Thanks!

    --Linda

  10. #10
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    Quote Originally Posted by Pooka1 View Post
    Don't rule out the power of no prayer whatsoever by millions of people! Just me not praying saved my horse from certain oblivion, for example.
    I would never discount anyone's "unprayer". Just because you don't invoke the name of God, doesn't mean it isn't effective. I believe that hope and love are as equally important as faith and you exhibit those daily. Its about a connectivity with humankind.

    Sorry, just couldn't stay out of that one.

    p

  11. #11
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    All of the discussion lately is really making me "reconsider" whether or not to keep my daughter braced. Since she has never been a typical case, I have always questioned whether or not bracing was even worth trying.

    Although it has been very easy in the sense that 1) my daughter is very compliant, 2) it hasn't caused any negative effects, and 3) it has given me the peace of mind that I am doing "something", 4) it defintely has done wonders for her posture (it improved bad habits or mannerisms she developed as a result of the CM/SM).

    It is very trying in that it requires travel, costs, and no guarantees.

    Emily's curve was stable prior to the Spinecor, and is most likely still stable as I don't believe that she has started her time of peak growth. Her in brace xrays have been scattered and her one out of brace xray still had her curve around 24 degrees. We have not had the luck of others whose in brace curves are almost non existent. I am not convinced that it has improved her curve, and I'm not sure that I really believe it has "held" her either.

    It's been almost two years, and I can say that I have given it an honest try, but the results just don't seem to be worth the effort. Part of me is ready to give it up, or at least make it a nighttime only type of thing. Of course, she is at "that age".

    Sorry for rambling just thinking "Out loud".
    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

  12. #12
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    Quote Originally Posted by Dingo View Post
    I think Celia's daughter from the Infantile_Juvenile board is down to 2 degrees!
    Why anyone braces a true 2° curve is beyond me. Then again, those are in-brace measurements ... and irrelevant.

    The efficacy of any brace is only demonstrated by an x-ray after 24-48 UNbraced, which (unless things have changed) Rivard and Colliard do not do. Last I knew they only take IN brace films ...

    Pam
    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

  13. #13
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    Quote Originally Posted by emarismom View Post
    All of the discussion lately is really making me "reconsider" whether or not to keep my daughter braced. Since she has never been a typical case, I have always questioned whether or not bracing was even worth trying.

    Although it has been very easy in the sense that 1) my daughter is very compliant, 2) it hasn't caused any negative effects, and 3) it has given me the peace of mind that I am doing "something", 4) it defintely has done wonders for her posture (it improved bad habits or mannerisms she developed as a result of the CM/SM).

    It is very trying in that it requires travel, costs, and no guarantees.

    Emily's curve was stable prior to the Spinecor, and is most likely still stable as I don't believe that she has started her time of peak growth. Her in brace xrays have been scattered and her one out of brace xray still had her curve around 24 degrees. We have not had the luck of others whose in brace curves are almost non existent. I am not convinced that it has improved her curve, and I'm not sure that I really believe it has "held" her either.

    It's been almost two years, and I can say that I have given it an honest try, but the results just don't seem to be worth the effort. Part of me is ready to give it up, or at least make it a nighttime only type of thing. Of course, she is at "that age".

    Sorry for rambling just thinking "Out loud".
    Emily's Mom,

    I just wanted to say that when I read your post, everything you said made perfect sense to me.

    Follow your instincts.

    Scoliosis is SO frustrating for the very reasons you stated - we, as parents, never know if our efforts (bracing, etc.) make a difference or not.
    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/

  14. #14
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    Quote Originally Posted by PNUTTRO View Post
    I would never discount anyone's "unprayer". Just because you don't invoke the name of God, doesn't mean it isn't effective. I believe that hope and love are as equally important as faith and you exhibit those daily. Its about a connectivity with humankind.

    Sorry, just couldn't stay out of that one.

    p

    Great point.

    Not only that, even if you could show not praying was effective, it doesn't mean there isn't a supernatural entity. That supernatural entity may resent people praying to change its will and may only reward people who don't ask to change it.

    I think if there is a benevolent creator entity, they will reward those who think for themselves and honestly admit there is no evidence for any supernatural entity.

    Of course if there is a benevolent creator entity, 500 million people including many kids would not have died due to small pox alone in the 20th century. That's pretty good proof for me that there is no benevolent supernatural entity. Intellectual honesty... not just a good idea. The BEST idea.
    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."

  15. #15
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    Supernatural entity

    I believe there is a supernatural entity that designed and created the universe. However I don't find a lot of evidence that his goals are the same as ours.

    Science is discovering some crazy things

    Dust ‘comes alive’ in space

    Our world may be a giant hologram

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