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concerned dad
04-02-2009, 04:11 PM
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 (http://www.scoliosis.org/forum/showpost.php?p=70267&postcount=3522)

mamandcrm
04-02-2009, 04:25 PM
I LOVE to hear good news...

Dingo
04-02-2009, 06:04 PM
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 (http://health.groups.yahoo.com/group/Infantile_Juvenile_Scoliosis/) is down to 2 degrees!

mariaf
04-02-2009, 08:10 PM
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.

Pooka1
04-02-2009, 08:19 PM
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 (http://www.scoliosis.org/forum/showpost.php?p=70267&postcount=3522)

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. :)

concerned dad
04-03-2009, 10:36 AM
Dingo,
You may be interested to see a link Sharon posted (http://www.scoliosis.org/forum/showpost.php?p=69520&postcount=21)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.

Dingo
04-03-2009, 04:15 PM
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.

Pooka1
04-03-2009, 04:47 PM
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.

LindaRacine
04-03-2009, 10:42 PM
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

PNUTTRO
04-04-2009, 01:09 PM
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

emarismom
04-04-2009, 03:27 PM
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".

txmarinemom
04-04-2009, 06:16 PM
I think Celia's daughter from the Infantile_Juvenile board (http://health.groups.yahoo.com/group/Infantile_Juvenile_Scoliosis/) 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

mariaf
04-04-2009, 08:10 PM
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.

Pooka1
04-05-2009, 12:06 PM
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. :D

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. :cool:

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.

Dingo
04-05-2009, 02:26 PM
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 (http://www.timesonline.co.uk/tol/news/uk/article2241753.ece)

Our world may be a giant hologram (http://www.newscientist.com/article/mg20126911.300-our-world-may-be-a-giant-hologram.html?full=true&print=true)

concerned dad
04-05-2009, 02:37 PM
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

Here it is Linda

This table is from the initial study (same authors in 1997 published in JBJS). the text quoted in the book Sharon referenced is from a follow up paper in European Spine Journal in 1998. I cant access that Journal prior to 2006.
The initial study (where this fig comes from) did not mention anything about spontaneous correction. I would love to see the 1998 paper. here is the reference in case anyone has access.

Eur Spine J. 1998;7(4):270-7. Links
Assessment of curve progression in idiopathic scoliosis.
Soucacos PN, Zacharis K, Gelalis J, Soultanis K, Kalos N, Beris A, Xenakis T, Johnson EO.