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Does Bracing Work?
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We are all on the same side. If anyone is at fault for creating an environment that could be interpreted otherwise it is me. If we all just sit around and agree on everything it doesn’t put questions in my head and prompt me to seek out answers. As I said on another thread we are (I am at least) sort of using the Socratic method. In Socratic discussions there is often tension between participants. It would be worth a “Google” if anyone is interested.
Perhaps, on the topic of Bracing, Sharon tends to adopt the glass is half empty view and I lean to the glass is half full view. At the end of the day, there is still the same amount of water in the glass.
Why is it important to explore this? If a braced kid just reads the half empty view it can be discouraging. They need to have some hope to get thru the difficulty of being a teen let alone a teen in brace.
Similarly, it is discouraging for parents of braced kids to hear the half empty view. They/we need to hear it because it is life, and the head in the sand thing does no one any good. But sometimes it is worthwhile to explore the glass is half full view too.
Now Sharon, I hope you don’t mind me ‘painting’ you as the pessimist and myself as the optimist on this. I suspect you would prefer to be considered a ‘realist’. I’m just trying to get my point across.
I reread the posts above and I think Pam’s analysis of the definition, or problems with the definition of ‘work’ is very good. Maybe we should have stopped the discussion there. But, my point of the thread is to bring to light the different meanings of the word ‘work’ in this context. And to make the case that the scientific data, however limited it is, shows that bracing does “something”.
I’m not trying to answer:
If that “something” is enough?
Is that “something” permanent?
Is that “something” worth it?
Is that “something” positive?
I have a lot of respect for the people here who were braced as children and went on to have surgery. The issues in the surgery forum are so much more serious than some of the things we are dealing with here. They fall into that 22% that Dolan discusses. I guess you could say that they got a bum deal. It is understandable that many of them would be very pessimistic about bracing. In fact, they likely exercise a lot of restraint voicing their opinions on the topic out of respect for the kids on the forum who are braced. But, we have to admit that on a forum like this we are very heavily weighted with that 22% of folks who were braced and ultimately had surgery. The other 78% of formerly (successfully? needlessly?) braced people aren’t here. Furthermore, since surgery is such a serious issue, that 22% who are dealing with surgery, really, really really know the issues around scoliosis. Us parents of braced kids, well, we are hoping our kids fall into the 78% group. While we have a ‘horse in this race’, the issues are minor compared to the surgery discussions.
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Originally posted by concerned dad View Post
Now, I am certain that the 0.4 degree, SD 7.0 degree is a typo. (0.4 should read 4.0 and we can see this error right from reading the graph).
But, as far as the half full glass thing goes, it shows that for the braced kids, as a group, they had curves less than 1 degree from what they were when they started 16 years previously.
Maybe it would be worthwhile for everyone interested to have another look at that Figure 1.
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I read back through the posts here, and this is really the last thing I have to say on the topic ...
Originally posted by concerned dad View PostPerhaps, on the topic of Bracing, Sharon tends to adopt the glass is half empty view and I lean to the glass is half full view. At the end of the day, there is still the same amount of water in the glass.
Why is it important to explore this? If a braced kid just reads the half empty view it can be discouraging. They need to have some hope to get thru the difficulty of being a teen let alone a teen in brace.
Similarly, it is discouraging for parents of braced kids to hear the half empty view. They/we need to hear it because it is life, and the head in the sand thing does no one any good. But sometimes it is worthwhile to explore the glass is half full view too.
Christine2, I'm fairly certain your quote below was aimed at me:
Originally posted by christine2I would also like to comment about how folks are asking for others to input on the discussion. That would be nice however when we try we are either stiffled or down right put down or insulted. A 13 year old girl tryed to voice her comment but was basically told to butt out she was to young and had no idea about the subject matter
Originally posted by christine2I am better able to understand the papers when presented in laymans terms.
Originally posted by cactigirl96trust me on this one!)
Dear concerned dad,
bracing does work. i wore a brace for over 2 years. before my treatment, my curvatures were 37 degrees. today (still in a brace) they are 25 degrees.
If you think it WAS, I'd be interested to hear a compelling rebuttal.
Again, I think discussions of bracing RESEARCH that get this technical should be placed in adult swim, but that's just me.
Pam
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
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Originally posted by concerned dad View PostPerhaps, on the topic of Bracing, Sharon tends to adopt the glass is half empty view and I lean to the glass is half full view. At the end of the day, there is still the same amount of water in the glass.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."
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Originally posted by concerned dad View PostThe issues in the surgery forum are so much more serious than some of the things we are dealing with here.
The fusable AIS cases can be fixed and sometimes cured NOW. Viable treatments for JIS including non-fusion surgery are still being studied but look promising.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."
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Originally posted by concerned dad View PostMaybe it would be worthwhile for everyone interested to have another look at that Figure 1.
But what would really interest me is seeing the error bars on that figure (which will subsume all the data I'm guessing).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."
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Just curious...
Hi Sharon,
I was looking back through some recent posts on this thread and I re-read again your statement about your girls and their scolioses-es. This is a bit off-topic and none of my business if you prefer not to respond, but has anyone ever given you any theories you find plausible as to why your identical twins seem to be on different paths? Has anyone looked at scoliosis in identical twins? It suggests to me something environmental (by that I mean, different types of activity each did, or something of that sort, not exposure to something)--certainly it's puzzling...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
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Originally posted by mamandcrm View PostHi Sharon,
I was looking back through some recent posts on this thread and I re-read again your statement about your girls and their scolioses-es. This is a bit off-topic and none of my business if you prefer not to respond, but has anyone ever given you any theories you find plausible as to why your identical twins seem to be on different paths? Has anyone looked at scoliosis in identical twins? It suggests to me something environmental (by that I mean, different types of activity each did, or something of that sort, not exposure to something)--certainly it's puzzling...
For another, there are known differences between identical twins besides (micro)environment (e.g., gene copy numbers and epigenetic changes) that might control aspects of curves.
Still, it is amazing that the one kid was so rotated so early and the other is still not rotated much at all at ~40*. They both have the same basic curve though, right T with apex at T9.
I don't think this has been looked at in a serious way in the literature. Early on, our surgeon thought that Willow would have ~80% of progressing to surgery no matter what just by virtue of the fact that her ID twin needed surgery. Then when he saw the radiograph of her in the bending brace, he gave her a ~60% of avoiding surgery. So this guy swung from a 20% chance to a 60% chance for Willow to avoid surgery, all within a matter of a few months. It's all guesswork if you ask me.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."
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Originally posted by Pooka1 View PostWhat would be more interesting to me is to see the distribution of curve magnitudes and types for each of the three groups.
But what would really interest me is seeing the error bars on that figure (which will subsume all the data I'm guessing).
In case you still don't have the reference article:
A prospective study of brace treatment versus observation alone in adolescent idiopathic scoliosis: a follow-up mean of 16 years after maturity.
Danielsson AJ, Hasserius R, Ohlin A, Nachemson AL.
Spine. 2007 Sep 15;32(20):2198-207.
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Originally posted by mamandcrm View PostHas anyone looked at scoliosis in identical twins? It suggests to me something environmental (by that I mean, different types of activity each did, or something of that sort, not exposure to something)--certainly it's puzzling...
http://www.scoliosis.org/forum/showt...2477#post72477
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I have the Danielsson ref but can't find the article online. I would have to go to a medical library to get the article or pay an exorbitant fee for it online.Last edited by Pooka1; 03-05-2009, 01:24 PM.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."
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I have discovered that some of the medical journals will grant free access to articles for patients. I don't remember which journals they are right now, but it's worth checking in to.
I have been able to access some pertinent scoliosis articles by sending a short e-mail to the journal stating my name and requesting access to the article as a patient. I received a link to the article within 24 hours or less. Pretty cool. Some of the journals have info about this at the bottom of the page, below where they offer you the article for the exorbitant fee.Gayle, age 50
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)
2010 VBS Dr Luhmann Shriners St Louis
2017 curves stable/skeletely mature
also mom of Torrey, 12 y/o son, 16* T, stable
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Originally posted by leahdragonfly View PostI have discovered that some of the medical journals will grant free access to articles for patients. I don't remember which journals they are right now, but it's worth checking in to.
I have been able to access some pertinent scoliosis articles by sending a short e-mail to the journal stating my name and requesting access to the article as a patient. I received a link to the article within 24 hours or less. Pretty cool. Some of the journals have info about this at the bottom of the page, below where they offer you the article for the exorbitant fee.
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Originally posted by concerned dad View PostPerhaps, on the topic of Bracing, Sharon tends to adopt the glass is half empty view and I lean to the glass is half full view.
CD, I think that the take home message from your graph is that after skeletal maturity and in the long term, all curves progress in a parallel fashion. So maybe bracing helped some of those kids to prevent a surgery down the road.
The only other comment I would make regarding the figure is that "on average" none of the patients had curves greater than 45 degrees. So maybe this wasn't the best cohort to review.
p
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