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Ballet Mom
07-13-2009, 03:22 PM
I found this post on someone's blog. I am removing the name and the name of the doctor because I feel a little funny posting identifying information when they may not want it prominently displayed. But to watch and wait at 25 degrees in the middle of a growth spurt? Not even the chance to wear a nighttime brace? And then no brace again when the curve reaches 32 degrees? :mad:

This wait and watch business really infuriates me. Dingo keep doing what you're doing...it's a heck of a lot better than what some of these surgeons are doing. Unbelievable... some of them don't even give the poor kids a chance. I would definitely head to a different surgeon's office if they didn't give my kid a chance to brace.



My daughter _____ is a beautiful young woman with the most amazing personality! Last year when she was at the doctor getting her eye looked at the doctor asked if she had ever been checked for scoliosis, of course we were shocked and said "no" why?

The doctor thought it might be a good idea to get it checked. So we did, we went to Dr. ______at the _____ in November and her back had a slight curve in it.

He said he wanted to watch it and to come back in March, of course I was thinking, no way... this is crazy she is just growing really tall all of the sudden and this was happening because she grew 4 inches in just a few months.

Well we went back and her back had curved another 7 degrees, it went from 25 to 32..I was sick inside, I am thinking wow...this is crazy! And I have absolutely no control over this thing that is happening to my daughters back and I am supposed to protect her from everything!

I will never forget when the nurse said "Wow" the next apt we are going to have you see Dr. ____!

Well this was last Friday! My head is spinning...what! He is recommending surgery and is amazed by the size of her "hump" ..her surgery is July 20, 2009. They are going to put"hardware" in her back and rods to straighten it out!

Pooka1
07-13-2009, 03:29 PM
This thread is what I was referring to in the other thread about the huge problem of scientific illiteracy in the general public.

Textbook.

Ballet Mom
07-13-2009, 03:36 PM
How so? Please explain.

bscoli
07-13-2009, 04:45 PM
I agree with your comment about frustration over "waiting and watching." You say: "I would definitely head to a different surgeon's office if they didn't give my kid a chance to brace." I think erring on the side of getting a second opinion (or even more) is wise. In addition to seeking opinions from surgeons, parents may want to also ensure they inquire with their pediatrician or family doctor or other clinical experts such as physical therapists. Consider this from a recent Chicago Tribune article:

Does [physical therapy] help strengthen the spinal musculature and improve breathing capacity? It's possible," said Dr. Purnendu Gupta, an orthopedic surgeon at the University of Chicago.

Physical therapist Cindy Marti, one of three Schroth-certified therapists at Spinal Dynamics of Wisconsin in Milwaukee isn't surprised. "Scoliosis is traditionally managed from a surgical perspective; surgeons don't typically embrace physical therapy," said Marti, the clinic owner. "But it can and should be explored as an option."

Read full article here:
http://www.chicagotribune.com/features/lifestyle/chi-tc-fam-child-scoliosis-0514-apr26,0,3305658.column

Upon request, Marti's office will provide abstracts from about adolescent idiopathic scoliosis and conservative treatment. The clinic's Schroth-certified therapists will also discuss clinical questions with physicians and other
healthcare providers as well as prospective patients. Call
414-302-0770 or send email to info@sdwpt.com

jillw
07-13-2009, 05:02 PM
Ballet Mom, I'm not sure exactly what Pooka means by "scientific illiteracy" but I can hazard a guess. I haven't heard of surgery being recommended for a curve of 32 degrees. If that's the case, the doctor who recommended the surgery is probably the source of "scientific illiteracy" that Pooka is referring to (but I'm sure she'll clarify when she is on next). So this raises 2 thoughts in my mind...either #1) When the daughter was taken back for the third appointment in July, her curve had progressed even further than the 32 degrees to surgical levels but the mother didn't specify what the curve was because she's so busy thinking about the surgery(generally 50 degrees although I hear some start thinking of it in the 40's - especially if there are other factors such as pain and maybe even the large rotation being referred to in this girl's case). If not that, then #2) Wow, this mom really needs a second or even third opinion before considering surgery on a 32 degree curve -i would not be confident with that doctor.

In any case, I'm sorry to hear of the progression of this girl's curve. It really is a shame that bracing wasn't even discussed at the 2nd appointment when the curve hit 32 degrees...

Ballet Mom
07-13-2009, 05:13 PM
The scoliosis has increased 4 degrees since the last visit in March, 3 months ago. ________ has open growth plates meaning that she has quite a bit of growing left to do. For this reason, It is likely the curve will continue to increase during ________'s growth spurt.

Apparently there was another appointment in June with an increase in curve. Amazing what happens when curves are just watched during the growth spurt. Why, it's almost predictable!

I actually think they should be bracing between twenty and twenty five degrees when diagnosed if the child hasn't finished their adolescent growth spurt yet. Why would you wait another several months after you hit 25 degrees unless there was no intention of ever bracing? It just makes it harder for bracing to work on a larger curve.

bscoli
07-13-2009, 05:21 PM
See:
http://www.sdwpt.com/media/docs/Schroth%20and%20RSC%20Case%20History-3-09.pdf

concerned dad
07-13-2009, 05:49 PM
I actually think they should be bracing between twenty and twenty five degrees when diagnosed if the child hasn't finished their adolescent growth spurt yet. Why would you wait another several months after you hit 25 degrees unless there was no intention of ever bracing? It just makes it harder for bracing to work on a larger curve.

Don’t forget what Danielson said in his paper which followed up on the large 1995 SRS bracing study:

As 70% of the observed patients during the original study period did not require any other treatment, 70% of the initially braced patients can therefore be regarded as having been treated unnecessarily. One major question is as follows: is it worth overtreating such a high percentage of patients to realize the goal of “saving” only 10% of the patients from surgery, the percentage in the group of observed patients?

So, you start bracing kids at 20 degrees and how many kids are going to be needlessly braced. As a parent, we want to “do something”. But, would you do it if YOU had to wear the brace? How sad would it be to wear a brace and STILL need surgery. How sad would it be to wear the brace during your youth and find out later it DIDNT do a darn thing.

The decision to brace or not should not be taken lightly. Personally, I would rather live with the guilt than have my daughter live her childhood wearing a brace needlessly. I respect others who have opposing views but I believe it is something we should all, at least, ponder before advocating bracing.

I think a night brace or perhaps the SpineCor (or even Schroth or Clear maybe) is a better compromise given the poor level of our understanding about the positive affects of bracing. Our grandchildren may benefit from the current bracing study. Hope they do it right this time.

LindaRacine
07-13-2009, 06:59 PM
It would be interesting to know if the doctor was a scoliosis specialist.

Ballet Mom
07-13-2009, 08:18 PM
It would be interesting to know if the doctor was a scoliosis specialist.

I just checked and the surgeon is a member of the Scoliosis Research Society. Does that make him a scoliosis specialist?

Ballet Mom
07-13-2009, 08:48 PM
The decision to brace or not should not be taken lightly.

CD, it doesn't sound to me like she was given the choice to brace or not to brace. How unfortunate to not even let the parent and child help make that decision. That major decision was taken away from them. I am of the opinion that a doctor should be able to explain the ramifications of either decision to the patient. I am simply trying to help parents make an informed decision and offering an alternative to them should they happen to enter into a surgeon's office who does not offer bracing to their child.

Even the Braist study site states the following:
Bracing is currently the standard of care for preventing curve progression and treating AIS. http://clinicaltrials.gov/ct2/show/NCT00448448

She obviously did not receive the standard of care after presenting with a 25 degree curve.


is it worth overtreating such a high percentage of patients to realize the goal of “saving” only 10% of the patients from surgery, the percentage in the group of observed patients?

I would respond with an emphatic yes! I thank God for my daughter's wonderful results. Nobody is forcing anybody else to brace, they can make their own decision. I'm glad nobody took our choice away from us. That response is a financial response for beancounters, not a medical one. I guess they shouldn't operate on most brain cancers or advanced cancers of any kind as they're just basically prolonging their life for a little while.

Do you still have a link or a title for the Danielson paper? I guess I would like to read it. Thanks.


Our grandchildren may benefit from the current bracing study. Hope they do it right this time.

I don't see how it is going to be very beneficial at all. They're using one type of brace and doesn't sound like they're going to account for factors like the patient being overweight, or having a flexible spine. Things that DO matter in bracing. And I'll be amazed if they get enough people in the study to make it actually mean anything.

concerned dad
07-14-2009, 11:20 AM
The decision to brace or not should not be taken lightly.

CD, it doesn't sound to me like she was given the choice to brace or not to brace. How unfortunate to not even let the parent and child help make that decision. That major decision was taken away from them. I am of the opinion that a doctor should be able to explain the ramifications of either decision to the patient.

I agree with you 100%.





is it worth overtreating such a high percentage of patients to realize the goal of “saving” only 10% of the patients from surgery, the percentage in the group of observed patients?
I would respond with an emphatic yes! I thank God for my daughter's wonderful results. Nobody is forcing anybody else to brace, they can make their own decision. I'm glad nobody took our choice away from us. That response is a financial response for beancounters, not a medical one. I guess they shouldn't operate on most brain cancers or advanced cancers of any kind as they're just basically prolonging their life for a little while.

I don’t think I agree with you on this point. I suspect many of the formerly braced folks here who nevertheless went on to have surgery would also disagree. I think the issue goes to just how onerous the treatment is. It is certainly “worthwhile” giving 100 patients high blood pressure meds to save 10 from a stroke. But a brace is not the same as a daily pill. IIRC, your child is in a night brace, isn’t she. I wonder if your view would change if she were wearing a 23 hr Boston brace for 5 years.

I don’t think the “beancounters” care about the degree of difficulty of the treatment. If they can spend $30k ($3k times 10 patients) to save $150k for one surgery then they should be “all for” bracing and I suspect they are. But, for those 9 kids who where braced and wouldn’t have progressed to surgery anyway: what’s the value you could put on a childhood unfettered by a back brace.

I do agree totally that the choice should not be taken away from the parent and child. An informed decision should be made. Key data is missing to make that decision and the BRAIST trial, even with the limitations you correctly note, will help folks in the future make those decisions.


Do you still have a link or a title for the Danielson paper? I guess I would like to read it. Thanks.
You can email me at concerned.dad.2 AT gmail.com and I’ll set you up.
The reference is:
A Prospective Study of Brace Treatment Versus Observation Alone in Adolescent Idiopathic Scoliosis
A Follow-up Mean of 16 Years After Maturity
Aina J. Danielsson, MD, PhD,* Ralph Hasserius, MD, PhD,† Acke Ohlin, MD, PhD,†and Alf L. Nachemson, MD, PhD*
SPINE Volume 32, Number 20, pp 2198–2207

LindaRacine
07-14-2009, 11:46 AM
I just checked and the surgeon is a member of the Scoliosis Research Society. Does that make him a scoliosis specialist?
I'm surprised to find that there's a scoliosis specialist who apparently feels so strongly that bracing doesn't work that he wouldn't give the parents a choice.

concerned dad
07-14-2009, 02:48 PM
It is good that Ballet Mom didnt include the doctors name. It is not unlikely that the mom she quoted missed some detail that is relevant.

The doctor apparently waited for evidence that the curve was progressing. The fact that the girl had already gone through a significant growth spurt (4 inches in a few months) suggests the possibility that he felt she was close to the end of her growth. I believe it is standard protocol to demonstrate a progressing curve in a post menarchal girl before bracing (for curves below 25).

What is baffling is why surgery at 32 degrees. Maybe the original poster left out mention of significant pain or rotation/deformity. Or Maybe the doctors boat payment was due. In any event, another good reason not to post second hand dialogues which include physicians names. What with patient confidentiality and all, the guy couldnt defend himself if he wanted to.

LindaRacine
07-14-2009, 04:53 PM
It is good that Ballet Mom didnt include the doctors name. It is not unlikely that the mom she quoted missed some detail that is relevant.

The doctor apparently waited for evidence that the curve was progressing. The fact that the girl had already gone through a significant growth spurt (4 inches in a few months) suggests the possibility that he felt she was close to the end of her growth. I believe it is standard protocol to demonstrate a progressing curve in a post menarchal girl before bracing (for curves below 25).

What is baffling is why surgery at 32 degrees. Maybe the original poster left out mention of significant pain or rotation/deformity. Or Maybe the doctors boat payment was due. In any event, another good reason not to post second hand dialogues which include physicians names. What with patient confidentiality and all, the guy couldnt defend himself if he wanted to.
Very good points.

Pooka1
07-14-2009, 07:44 PM
The blog entry and many comments from others can be shown to be scientificially illiterate. CD makes some of the points.

Similar to thread about rod breakage on Fix's forum, it's one Emily Litella moment after the next with some folks.

What we have here is a scared mother* who clearly knows zip about the research (or lack thereof) on scoliosis treatment modalities who canNOT be expected to get the details correct. I am SO glad the doctor's name was left out because I think it's risible how some folks come on here claiming respected experienced surgeons are telling them patent nonsense.

You would think from reading some of the posts here that orthopedic surgeons are complete idiots and that mothers with ZERO medical training, not to mention LESS THAT ZERO advanced training in orthopedic surgeon act like they know more than these surgeons.

If you don't understand why surgeons do something then just ask them. What we have in this thread is certain folks not knowing and instead of asking, they instead make up wild, baseless nonsense.

*I searched on the text strings for that blog entry and can't find the source. I am wondering if it is a real blog entry on some blog. I think it would find it but I'm not sure.

Pooka1
07-14-2009, 07:56 PM
I've removed this post because there was a complaint about my tone (as opposed to the substance).

Edited to simply say lay people probably know less about serious orthopedic issues than orthopedic surgeons.

Please excuse the penetrating glimpse into the obvious of that but I think it needs repeating.

Pooka1
07-14-2009, 08:38 PM
I'm surprised to find that there's a scoliosis specialist who apparently feels so strongly that bracing doesn't work that he wouldn't give the parents a choice.

Even I don't believe that.

I doubt the story.

Pooka1
07-14-2009, 08:40 PM
It is good that Ballet Mom didnt include the doctors name. It is not unlikely that the mom she quoted missed some detail that is relevant.

Isn't a much more likely explanation here that the mother got every detail exactly right and that the surgeon is just an idiot who knows less about scoliosis treatment than the mother?

Lorraine 1966
07-15-2009, 04:26 AM
Sharon, thank you for taking the time to write these posts, you have put them into perspective. I agree with you 100%.


Lorraine.

Ballet Mom
07-15-2009, 07:35 AM
CD,


The doctor apparently waited for evidence that the curve was progressing. The fact that the girl had already gone through a significant growth spurt (4 inches in a few months) suggests the possibility that he felt she was close to the end of her growth. I believe it is standard protocol to demonstrate a progressing curve in a post menarchal girl before bracing (for curves below 25).

I can't imagine any doctor thinking that a girl who had just grown 4 inches in the last few months would suddenly be done with their growth spurt. Growth charts show that clearly, and it's why doctors continue to brace for a couple of years past menarche. And her curve is not below 25, it presented at 25.


What is baffling is why surgery at 32 degrees.

You must have missed this post, I posted it below the first:


The scoliosis has increased 4 degrees since the last visit in March, 3 months ago. ________ has open growth plates meaning that she has quite a bit of growing left to do. For this reason, It is likely the curve will continue to increase during ________'s growth spurt.

So actually the surgeon was scheduling for surgery at 36 degrees. Notice that she has open growth plates which clearly a surgeon wouldn't have mistaken for her already being through the growth spurt, in fact it appears the mother has been told her daughter still has a lot of growing to do and that is probably why the doctor was anticipating she would require surgery.

But it's a nice try at rationalization. I'm not sure why we're doubting this mom seeing as Pooka has already stated that she has gone to two surgeons who don't brace at all (one has started night bracing just recently). I think the practice must be widespread.

Pooka1
07-15-2009, 07:43 AM
So actually the surgeon was scheduling for surgery at 36 degrees

Not believable absent other factors. Do you know why?


Notice that she has open growth plates which clearly a surgeon wouldn't have mistaken for her already being through the growth spurt, in fact it appears the mother has been told her daughter still has a lot of growing to do and that is probably why the doctor was anticipating she would require surgery.

My daughter was at 40*, had open growth plates and therefore growing to do and surgery wasn't even mentioned.

I don't believe the story. Someone got something wrong.

You don't really understand why the story is unbelievable and so you believed it.

Ballet Mom
07-15-2009, 07:46 AM
CD, thanks for the offer of the study, but I can read what I want to off of the study abstract:

A Prospective Study of Brace Treatment Versus Observation Alone in Adolescent Idiopathic Scoliosis
A Follow-up Mean of 16 Years After Maturity
Aina J. Danielsson, MD, PhD,* Ralph Hasserius, MD, PhD,† Acke Ohlin, MD, PhD,†and Alf L. Nachemson, MD, PhD*

Results: No patients who were primarily braced went on to undergo surgery. In patients with observation alone as the intention to treat, 20% were braced during adolescence due to progression and another 10% underwent surgery. Seventy percent were only observed and increased by 6° from inclusion until now. No patients underwent surgery after maturity. Progression was related to premenarchal status.

Conclusion: The curves of patients with adolescent idiopathic scoliosis with a moderate or smaller size at maturity did not deteriorate beyond their original curve size at the 16-year follow-up. No patients treated primarily with a brace went on to undergo surgery, whereas 6 patients (10%) in the observation group required surgery during adolescence compared with none after maturity. Curve progression was related to immaturity.

I think this study is a perfect example of why doctors brace. How dare anyone consider writing off the ten percent of patients would progress to surgery without bracing and how dare people think it acceptable to let the curve increase in non-braced patients an average of six degrees?

If you don't want to brace, don't brace. Don't force everybody else into your decision.

Pooka, please notice that at sixteen years follow-up patients with a moderate or smaller curve size did not deteriorate from their original curve size.

Pooka1
07-15-2009, 07:52 AM
Pooka, please notice that at sixteen years follow-up patients with a moderate or smaller curve size did not deteriorate from their original curve size.

Are you as sure you understand this study and how well supported their conclusions are as you are about how patients are recruited into clinical trials?

Also, do you think the surgeons who say there is no good proof that bracing works simply haven't read this paper? Or don't understand it as well as you do? How do you explain the fact that many surgeons claim there is no good proof that bracing works? Are they high? Are they simply not as smart as you? What?

Ballet Mom
07-15-2009, 07:52 AM
My daughter was at 40*, had open growth plates and therefore growing to do and surgery wasn't even mentioned.

I don't believe the story. Someone got something wrong.

You don't really understand why the story is unbelievable and so you believed it.

Really Pooka, I know you'd like to try and convince everyone that I'm an idiot, but I truly just think it makes you look bad. I would suggest you stop foaming at the mouth.

Different doctors are, well, different. I just pointed out a surgery that was done at 36 degrees. If you're so concerned, I'm sure you can just take your second daughter there and be done with it, if only you can convince your daughter she wants the surgery.

Pooka1
07-15-2009, 07:53 AM
Different doctors are, well, different. I just pointed out a surgery that was done at 36 degrees.

No your didn't. I don't believe that operation occurred unless there were other factors at play. You wouldn't know if there were other factors. It is misleading to relay that testimonial when you don't know the full story. It's essentially quote-mining which is not honest although in this case I don't think were were consciously trying to mislead. You just didn't know to ask the right questions.

I don't think you are ever trying to lie. I think you are breathtakingly clueless on many subjects from how patients are recruited in clinical trials to how various science agency heads interact (or don't). I am not saying your aren't intelligent. I am saying you are missing many key facts about the things you write about and it is obvious.

Ballet Mom
07-15-2009, 07:56 AM
No your didn't.

Prove it.

Find it yourself. Others will remember. We discussed it on the forum.

Pooka1
07-15-2009, 08:00 AM
Really Pooka, I know you'd like to try and convince everyone that I'm an idiot,

There is a difference between intelligence and knowledge. You could have all the intelligence in the world and not have knowledge.

For example, you either know what other top scientists are saying about Collins or you don't. That is "knowledge" as opposed to intelligence.

Do you see that distinction?

Ballet Mom
07-15-2009, 08:04 AM
Pooka,


Quote:
Originally Posted by Ballet Mom
Pooka, please notice that at sixteen years follow-up patients with a moderate or smaller curve size did not deteriorate from their original curve size.

Are you as sure you understand this study and how well supported their conclusions are as you are about how patients are recruited into clinical trials?

How about another recent study that supports this study?

http://www.sosort-lyon.net/pdf/saa23.pdf

Title: Long-term outcome after Boston brace treatment in adolescent idiopathic scoliosis.
Authors: Lange JE, Steen H, Brox JI.

Results: The magnitude of the primary prebrace major curve was in average 33.2 (range 20 – 52) degrees (n=110). At weaning after 2.9 (0.5 – 9.3) years of treatment and at the last follow-up 19.8 (12 - 28) years after weaning the corresponding values were 28.5º (9 -56) (n=110), and 34.0º (8 – 87) (n=66), respectively. Even if the average progression of the major curve after weaning was 5.5º (-7 – 44), the long time follow-up compared with the prebrace value was -0.6º (-21 – 36) (n=66).

Ballet Mom
07-15-2009, 08:09 AM
It does make me wonder, with the responses to my bracing posts, if anyone posting on this forum is possibly associated with the Braist study in any way. This would make a lovely recruiting ground for the study. Anyone have any disclosing to do?

concerned dad
07-15-2009, 09:25 AM
It is a tough personnel decision to brace or not. I would submit that very few parents and not all orthopedic doctors have the current background knowledge to make an informed decision. I know for sure that I didn’t when confronted with the choice. I also know that as my understanding of the issues evolved, my views changed.


We know that bloodletting was the standard of care for many afflictions not too long ago
We know that electrical stimulation was often used for scoliosis not too long ago
We know that about 22% of braced kids go on to require surgery.
We don’t know what percent of unbraced kids go on to require surgery.
We know that a myriad of factors are involved which are related to progression (the main ones being menarchal status and curve amplitude at ‘presentation”)
We know that a parents love and concern for their child may lean them towards bracing curves that have a low likelihood of progression.
We know that wearing a brace can be a very difficult burden for a child.
We know that there is lots of money involved, both in promoting surgery and in promoting bracing.
We know the vast majority of practitioners, from conservative providers to surgeons are motivated not by money but by their desire to help children and often have strong opposing views.
We know there is still a lot to learn about scoliosis but parents are forced into making difficult decisions today with limited knowledge



What else do we know?

Sharon loves horses and has a soft spot in her heart for elephants
Pam’s son is serving our country (God bless him)
Christine’s daughter has had phenomenal results with the SpineCor
Dingo is one smart dude who looks at issues with fresh eyes
Linda has her hands full here and
I am a concerned dad

michele27
07-15-2009, 11:52 AM
Also, do you think the surgeons who say there is no good proof that bracing works simply haven't read this paper? Or don't understand it as well as you do? How do you explain the fact that many surgeons claim there is no good proof that bracing works? Are they high? Are they simply not as smart as you? What?


What about my daughter's surgeon who recommended bracing? Is he not as smart as the doctor's who disagree?

I don't get where all the hostility to the OP is coming from. Why this has become an argument over whether bracing works or not is unclear. She simply stated that waiting and watching can have negative effects when children are going through rapid growth and posted a blogger's experience to illustrate. Whether or not something was left out really isn't the point as we are not discussing advocating surgery for thirty-something degree curves. What I took note of was how unconcerned the blogger's doctor seemed to be about her dd's consistently progressing curve and how he did not lay out ALL of her options for her along the way. Waiting certainly didn't spare my daughter anything. Had we braced at diagnosis(30*), I don't believe her curve would have progressed 10* in 2 months. It COULD, I suppose, but not likely and I wouldn't have known either way. But because we didn't I know 100% that her curve progressed while waiting, and having that knowledge is not reassuring. Whether or not bracing will work for her cannot be found in ANY study because we are not dealing with something that is universal to all who have it. One may say "statistically this or that" but at the end of the day it is still an unknown as far as it relates to an individual's prognosis. I am giving her her only shot at not having to have surgery and if she still does after bracing, I don't consider the bracing unneccessary. I already know that she can progress quickly during growth and at Risser 0 I would consider it a success if it holds her curves period.

So, Balletmom, I appreciate your opinion and agree that waiting, particularly during growing years for children with borderline bracing curves seems counterproductive if progression is more likely with growth and the goal is to begin bracing while bracing still has a chance to work.

Hey CD! I didn't really post about my daughter's brace follow up, but I did include it in my signature. I have to say that as of right now, my dd is doing fine with her brace and it is not causing her any problems, physically or emotionally. You know I worried about it being a burden but so far so good. Now I reserve the right to change my opinion if it fails to hold her curves or causes her emotional distress :D!

Michele

michele27
07-15-2009, 02:08 PM
I already know that she can progress quickly during growth and at Risser 0 I would consider it a success if it holds her curves period.

I want to clarify that statement. I would consider it a success(not in the clinical definition of successful bracing, but for her specific needs) if it holds her curves until she is done growing regardless of if she were to begin progressing when bracing was completed and eventually needed surgery.

concerned dad
07-15-2009, 02:13 PM
So, Balletmom, I appreciate your opinion and agree that waiting, particularly during growing years for children with borderline bracing curves seems counterproductive if progression is more likely with growth and the goal is to begin bracing while bracing still has a chance to work.

I think this is very true. IF you are inclined to brace, the earlier the better. It will increase the number of kids unnecessarily braced, but improve the results of those for which bracing is beneficial (assuming that there are any for which it is beneficial - not saying this to open a can of worms, but it is just an "assumption" at this point IMO). This is one of the points made in the Danielson paper (not in the abstract though). Danielson says their results suggest ear;y school screening will have a positive affect on ultimate outcomes but acknowledges many will be unnecessarily braced. A philosophical dillemma.





Hey CD! I didn't really post about my daughter's brace follow up, but I did include it in my signature. I have to say that as of right now, my dd is doing fine with her brace and it is not causing her any problems, physically or emotionally. You know I worried about it being a burden but so far so good. Now I reserve the right to change my opinion if it fails to hold her curves or causes her emotional distress :D!
Michele

That is good news Michele and thanks for the update. The good inbrace correction sure is a positive sign. Hope she can continue to deal well with the brace. If it causes her emotional problems you still have the opton of considering a night brace which may be easier. We have our next appointment in the end of August and I have no idea what to expect.

Pooka1
07-15-2009, 03:36 PM
What about my daughter's surgeon who recommended bracing? Is he not as smart as the doctor's who disagree?

Here's where we have to be extra careful so as not to inadvertently imply surgeons are idiots.

I seriously doubt your surgeon will claim braces have been proven to work. That is NOT to say he doesn't feel and hope they might work in some cases despite not having good evidence.

Do you see that distinction?

I question that any experienced surgeon will claim the literature supports the efficacy of bracing. The literature is what it is and can't be majicked away.


I don't get where all the hostility to the OP is coming from. Why this has become an argument over whether bracing works or not is unclear.

The answer is that virtually every word certain people write starts from a ASSUMPTION that bracing works because they don't understand the state of the literature. When you start from that assumption you necessarily make counterfactual statements about whether bracing works and others are going to correct the record.


She simply stated that waiting and watching can have negative effects when children are going through rapid growth and posted a blogger's experience to illustrate.

See here is an example where it is obvious you are ASSUMING bracing is effective. The literature doesn't support this stance. And the blogger experience in this case proves nothing.


Whether or not something was left out really isn't the point as we are not discussing advocating surgery for thirty-something degree curves.

The fact it was mentioned was in an effort to show that the surgeon is not necessarily competent. But it is not rational that a surgeon will operate on a mid 30s* curve and the story is not believable as written. The real story is not what was written and the surgeon is most likely extremely competent.

Pooka1
07-15-2009, 04:17 PM
It is a tough personnel decision to brace or not. I would submit that very few parents and not all orthopedic doctors have the current background knowledge to make an informed decision. I know for sure that I didn’t when confronted with the choice. I also know that as my understanding of the issues evolved, my views changed.


We know that bloodletting was the standard of care for many afflictions not too long ago
We know that electrical stimulation was often used for scoliosis not too long ago
We know that about 22% of braced kids go on to require surgery.
We don’t know what percent of unbraced kids go on to require surgery.
We know that a myriad of factors are involved which are related to progression (the main ones being menarchal status and curve amplitude at ‘presentation”)
We know that a parents love and concern for their child may lean them towards bracing curves that have a low likelihood of progression.
We know that wearing a brace can be a very difficult burden for a child.
We know that there is lots of money involved, both in promoting surgery and in promoting bracing.
We know the vast majority of practitioners, from conservative providers to surgeons are motivated not by money but by their desire to help children and often have strong opposing views.
We know there is still a lot to learn about scoliosis but parents are forced into making difficult decisions today with limited knowledge



What else do we know?

Sharon loves horses and has a soft spot in her heart for elephants
Pam’s son is serving our country (God bless him)
Christine’s daughter has had phenomenal results with the SpineCor
Dingo is one smart dude who looks at issues with fresh eyes
Linda has her hands full here and
I am a concerned dad


Post of the month nomination

Ballet Mom
07-15-2009, 05:19 PM
Here's where we have to be extra careful so as not to inadvertently imply surgeons are idiots.

Are you a surgeon Pooka? You take such great umbrage at anything you seem to see as a slight to them. Curious.


The fact it was mentioned was in an effort to show that the surgeon is not necessarily competent. But it is not rational that a surgeon will operate on a mid 30s* curve and the story is not believable as written. The real story is not what was written and the surgeon is most likely extremely competent.

This leads to incorrect thinking. The fact that it was mentioned was not because I am trying to say a surgeon is incompetent. I am trying to let other parents who will not know enough when their child is diagnosed to go to another surgeon if they have not been prescribed a brace, if they are interested in bracing. Because time is of the essence. By the time they have it figured out, it will likely be too late for their kid. I am giving a heads up that there are surgeons out there who do not believe in bracing, and you may need to take your business elsewhere, or even inquire with the doctor's office before you go, to see if they brace patients. If those parents are interested in bracing. If not, no big deal, stay with the non-bracing surgeon.


But it is not rational that a surgeon will operate on a mid 30s* curve and the story is not believable as written.

You're wrong. I posted a link to a surgeon that did a fusion on a patient with a 36 degree curve. Right there in North Carolina. Very close for you to take your daughter to. I suspect he is a very competent surgeon.

How do you explain my daughter's success with bracing anyway? The curve just magically stopped right when she got the brace even though it was curving and rotating in front of my eyes?

Ballet Mom
07-15-2009, 05:30 PM
Pooka,


I searched on the text strings for that blog entry and can't find the source. I am wondering if it is a real blog entry on some blog. I think it would find it but I'm not sure.

I checked also before I posted to make sure people couldn't find it. I figured people would be checking and I wanted to make sure they wouldn't find the blog. I'm not here to discredit anyone. I probably know the answer as to why it can't be found, but you're the scientist, and as we all know, they are the only ones who know anything, so I'll let you figure it out.

Ballet Mom
07-15-2009, 05:36 PM
Are you as sure you understand this study and how well supported their conclusions are as you are about how patients are recruited into clinical trials?

I'm sorry Pooka that you are unable to understand what I was saying about the recruiting of patients in the Braist study. I don't know what to do about that. CD got it.

michele27
07-15-2009, 07:43 PM
See here is an example where it is obvious you are ASSUMING bracing is effective. The literature doesn't support this stance.

I do assume bracing works while it is working. If dd went in tomorrow and had progressed, I'd assume it wasn't working. The literature doesn't sway me in either direction but I do read a lot of the studies referenced on this site and others because it is my duty as her parent to be informed. I make my decisions based on the results she gets as we go along. Even if they could prove bracing worked, there is an exception to every rule and I would still have the same opinion I stated above.

I understand that bracing cannot be proven because if one braces and doesn't progress, then one could say it was the bracing that made the difference or argue that the curve would have stabilized regardless of bracing. However when one braces and progresses anyway, then it is a fact that bracing did not work. That, to me, does not negate bracing across the board. It just means they can only prove when it doesn't work. The only thing I can say with 100% certainty is that my daughter progressed significantly in a short time while we waited and watched, so no, I'm not a big fan of that protocol. I am also not fond of bracing, but will give it a shot in hopes it will prevent or at least delay surgery for my daughter because I'm not fond of hospitals or surgery either!;)

Pooka1
07-15-2009, 08:30 PM
I understand that bracing cannot be proven because if one braces and doesn't progress, then one could say it was the bracing that made the difference or argue that the curve would have stabilized regardless of bracing. However when one braces and progresses anyway, then it is a fact that bracing did not work. That, to me, does not negate bracing across the board. It just means they can only prove when it doesn't work. The only thing I can say with 100% certainty is that my daughter progressed significantly in a short time while we waited and watched, so no, I'm not a big fan of that protocol. I am also not fond of bracing, but will give it a shot in hopes it will prevent or at least delay surgery for my daughter because I'm not fond of hospitals or surgery either!;)

This is very well reasoned and very clearly written. I bolded a very key issue that you have identified but would expand it to say that some failures might be due to noncompliance. Bracing is very hard to study. I hope folks read your post because it captures the key points in a minimal amount of words.

Ballet Mom
07-15-2009, 11:39 PM
I agree, great post. :)

concerned dad
07-16-2009, 08:56 AM
Pooka: This is very well reasoned and very clearly written.


Ballet Mom: I agree, great post.


Add me to the list of fans of that paragraph.

Nice job expressing the common ground we share Michele.

concerned dad
07-16-2009, 02:31 PM
Just to add a point


I understand that bracing cannot be proven because if one braces and doesn't progress, then one could say it was the bracing that made the difference or argue that the curve would have stabilized regardless of bracing.

This sort of happened to my daughter except the other way around.

She went from 38 down to 34 in a few months

She only braced for a short time (~6 weeks) with essentially no inbrace correction. So I dont attribute the reduction to the brace. BUT, had she been braced and had I not noticed the ridiculous claim about her inbrace correction, the reduction would have been chalked up to the brace. I DO attribute it to measurement error but if the next reading is also low, well, either divine intervention or spontaneuos correction (call it what you like everyone - the results are the same).

And, if it goes up, well, I'll have to live with the guilt of wondering if a different brace would have helped.

Not an easy clear cut decision, but the 3 of us made it weighing the information we had. As Ballet Mom points out, the FREEDOM to make the decision is important.

emarismom
07-16-2009, 03:36 PM
Michele27, I agree 100% with you. I braced my dd even though she was stable and not progressing because I knew the "risk of progression" was too great to continue with the wait and watch protocol.

As to statistics those are just numbers and are not necessarily the whole story. When my dd was born, I had a tubal ligation, cut-tied-burned, 99% chance of never getting pregnant again. Guess what? 4 years later I was pregnant:eek: Just because the odds are in your favor, doesn't mean it is a done deal. When the odds are leaning towards progression, bracing is at least worth a shot, even if it only delays fusion.

jenny
07-16-2009, 08:28 PM
I agree with concerned dad re the brace. We have been very diligent about having our son wear his back brace for over 5 years, yet he still needs surgery next month & he is 6 years old. Every day for the past year he has whined & cried over his back brace; it has definitely affected his self-esteem. If we had known he would for sure need the surgery, we would have stopped the brace a long time ago- it's not worth it...

Ballet Mom
07-17-2009, 12:42 AM
jenny,

I'm sorry to hear that your son has to have surgery. As you probably know, infantile and juvenile scoliosis is a completely different ballgame from AIS. I have a hard time thinking of bracing a child for that many years also. I am very happy that they are developing alternatives to bracing for kids who have to wear braces for so many years.

However, perhaps the brace slowed down the curve a bit and bought your son some extra time for additional growth that he wouldn't have had without the bracing? Who knows, obviously it can't be proven one way or the other, but the possibility is certainly there.

Good luck.

Ballet Mom
07-17-2009, 12:53 AM
CD,


As Ballet Mom points out, the FREEDOM to make the decision is important.

Thank you, I really do think that is very important. I would be very angry if my original surgeon hadn't prescribed a brace for my daughter, whether it ended up working or not.

CD, I'm hoping your daughter did get a divine intervention. Everyone else can chalk it up to a spontaneous corrrection, and I'll chalk it up as being a result of your heartfelt prayer. :)

By the way, I'm fine if people think bracing doesn't work, makes it all the more likely that my daughter's curve being stopped was an intervention from above....seeing as I don't believe in "magick". ;)

Lorraine 1966
07-17-2009, 04:10 AM
Jenny I am so very sorry that the brace has not worked for your son. and now he has to have surgery. Bless his little heart at 6 years of age and to have gone through all that he has with the brace on too.

I think we do everything we possible can for our children, we try so hard to make the right choices and when they dont work out we are not guilty of anything but loving them too much. I will keep your family in my thoughts.



Lorraine.

Ballet Mom
07-17-2009, 08:48 AM
jenny,

By the way, I thought I'd give you this link also since Dr. Skaggs is in the forefront of using all the VEPTRs and growing rods, etc. Hopefully there is someone qualified around your area with these techniques.

http://www.childrenshospitalla.org/site/c.ipINKTOAJsG/b.3905357/

betty14
07-17-2009, 11:06 PM
Hello:

I've just read this interesting thread, and would just like to add my opinion that "watching and waiting" is simply a silly thing to do. Or, not do, as it happens.

Some of my thoughts:

A while back, someone mentioned "intelligence" vs. "knowledge". Personally, I find in my own clinical practice that the patients that do the best may not have knowledge (at the start), but they have sufficient intelligence to want to be proactive and learn what they need to do in order to achieve the results they want.

People on both sides of an issue must be cautioned not to make assumptions, or ignore or downplay information to help bolster their own bias. (I am referring to all posters, including Pooka1, who seems to think she has one of the only clear, unbiased, scientific heads on the NSF!). It is important to recognize one's biases, in order to reduce their impact. See my bias below in my signature.

I have had many dealings with various surgeons. In fact, they do have widely divergent views on certain things, from whether and when to brace after ACL surgery, to how many weeks to limit certain activities, to whether or not they even recommend any rehab post surgery..... and yes, some surgeons actually think that other surgeons are incompetent, even if they have one lone case ten years ago to base their opinion on! Some surgeons keep current of literature, and some don't. Some are old fashioned, and others are forward thinking. Etc....

Cheers all, B.

Pooka1
07-18-2009, 08:35 AM
Hello:

I've just read this interesting thread, and would just like to add my opinion that "watching and waiting" is simply a silly thing to do. Or, not do, as it happens.

The only legitimate reason for thinking watching/waiting is silly is if you have evidence that it is less effective that some "proactive" "treatment."

The world is still waiting on that evidence. Schroth alone has been at it for over 90 years.


People on both sides of an issue must be cautioned not to make assumptions, or ignore or downplay information to help bolster their own bias. (I am referring to all posters, including Pooka1, who seems to think she has one of the only clear, unbiased, scientific heads on the NSF!). It is important to recognize one's biases, in order to reduce their impact. See my bias below in my signature.

There is having an open mind an being skeptical. That's what I shoot for. If you don't think so then I haven't been clear or you are simply projecting. Skepticism combined with an open mind is the ONLY way forward if you want to know anything that is real.

Science is a way of knowing. Being "proactive" absent evidence is a way of pretending to know.

There is evidence and there is wishful thinking.

Pooka1
07-18-2009, 09:25 AM
A while back, someone mentioned "intelligence" vs. "knowledge".

It's very important to see this distinction which I think you do.

You certainly have to be intelligent to get an engineering degree let's say. But because engineering curricula don't expose the students to facts about evolutionary biology and historical geology, you see a disturbingly high percentage of engineers who don't understand why evolution is a fact or don't understand why the earth is a few billion years old. And because lay folks incorrectly lump engineers in with research scientists, this would confuse them and they might even cite this as some knock down argue against the facts of evolution and deep time.

There is no starker example of the difference between intelligence and knowledge than that.

Collins, because he is extremely intelligent and has knowledge, of course accepts the fact of evolution over deep time. He never would have been nominated to run NIH had he not. The hew and cry would have been deafening and his nomination would have been withdrawn within a few microseconds had he not accepted those scientific facts. Actually, Obama would never nominate a young earth creationist to head a science agency (or any agency I hope).

Life in the real world amidst reality. Now THAT is a breath of fresh air.

nancystreasures
08-09-2009, 01:44 PM
Our son was in 3 TLSO body braces over 3+ years - each time the brace did nothing to stop or even slow down the progression of his curve - we were trying to buy him time for upper torso growth - just to mention he is special needs (so adjustable grow rods are not an option) & he hated that brace more than he could ever express:mad:
his first brace was when he was at 45 degrees /2nd 52 /3rd 78
he is now 10+ yrs old & his curve is at 96 degrees in Aug 09 (82 degrees in March 09)

I think every case is individual & unique - we can easily sit & judge how a person/Doctor/therapist etc may handle a case/situation but we don't always get all the right facts (as parents we go in upset & don't always understand things to the fullest & don't think of questions until after we leave & have time for the info/diagnosis to settle in) - as betty14 stated we should not try to waver another into our own bias way of thinking because of what happened in our situation, again each is unique & it is the scoliosis patient we have to think about - their safety, comfort & future
be good & be happy --- Nancy