PDA

View Full Version : Are Some Canadian Doctors from the Dark Ages?



LindaRacine
04-19-2005, 11:34 AM
Hi...

I found the following article this morning:

http://www.macleans.ca/topstories/health/article.jsp?content=20050419_100836_5800

Here's the text:


Does bracing straighten a curved spine?

Decades-old treatment for scoliosis is supported by little scientific evidence
For decades, doctors have been prescribing braces for children with scoliosis -- a sideways curvature of the spine -- but there is actually little scientific evidence to support the practice. A team of Canadian and American researchers is hoping to change that.

Dr. James Wright, a co-investigator and surgeon-in-chief at the Hospital for Sick Children, says doctors aren't really sure braces reduce the risk of the curvature progressing to the point of requiring surgery. And wearing the uncomfortable and obtrusive device for several years could prove a heavy psychological burden for a teenager concerned about fitting in with her peers.

"I have to say to the family, I think they're probably effective, but I'm not absolutely certain," Wright says. "This is one of those things which is quite inconvenient, it's quite expensive and it has side-effects, which are what it does to the psyche of a growing adolescent."

Surgery, on the other hand, comes with "low but significant" risks for paralysis and blood transfusion, and could lead to long-term back problems as a result of the need to fuse the spine in a straightened position. "If we could reduce the risk of ultimate surgery, that would be a real benefit," Wright says.

Showing whether bracing actually works would also address a controversy over whether children should be checked for scoliosis at school or the doctor's office. Some medical organizations support this practice, while others recommend against it because of a lack of evidence for an effective treatment.

To determine whether bracing works, Dr. Wright and researchers at 19 other centres across North America are embarking on a five-year study in which they will randomly assign about 480 children (65 of them from Canada) to be fitted with a brace or simply observed. At the end of the study, they will see whether children who wore the brace were less likely to need corrective surgery.

The Canadian Institutes of Health Research and the Shriners hospital system have promised funding for seven centres involved in the $3.5-million US study, contingent on the U.S. National Institutes of Health picking up the rest of the tab.

The NIH turned down the group's initial request for funding but has given them permission to reapply this year.

I'm not sure where this guy gets his information, but the Scoliosis Research Society funded a study, published in 1997, that showed definitively that bracing is effective in specific populations:


Bone Joint Surg Am. 1997 May;79(5):664-74. Related Articles, Links

A meta-analysis of the efficacy of non-operative treatments for idiopathic scoliosis.
Rowe DE, Bernstein SM, Riddick MF, Adler F, Emans JB, Gardner-Bonneau D.
Kalamazoo Center for Medical Studies, Michigan 49008, USA. rowe@kcms.msu.edu

With use of data culled from twenty studies, members of the Prevalence and Natural History Committee of the Scoliosis Research Society conducted a meta-analysis of 1910 patients who had been managed with bracing (1459 patients), lateral electrical surface stimulation (322 patients), or observation (129 patients) because of idiopathic scoliosis. Three variables - the type of treatment, the level of maturity, and the criterion for failure - were analyzed to determine which had the greatest impact on the outcome. We also examined the effect of the type of brace that was used and the duration of bracing on the success of treatment. The number of failures of treatment in each study was determined by calculating the total number of patients who had unacceptable progression of the curve (as defined in the study), who could not comply with or tolerate treatment, or who had an operation. The percentage of patients who completed a given course of treatment without failure, adjusted for the sample sizes of the studies in which that treatment was used, yielded the weighted mean proportion of success for that treatment. The weighted mean proportion of success was 0.39 for lateral electrical surface stimulation, 0.49 for observation only, 0.60 for bracing for eight hours per day, 0.62 for bracing for sixteen hours per day, and 0.93 for bracing for twenty-three hours per day. The twenty-three-hour regimens were significantly more successful than any other treatment (p < 0.0001). The difference between the eight and sixteen-hour regimens was not significant, with the numbers available. Although lateral electrical surface stimulation was associated with a lower weighted mean proportion of success than observation only, the difference was not significant, with the numbers available. This meta-analysis demonstrates the effectiveness of bracing for the treatment of idiopathic scoliosis. The weighted mean proportion of success for the six types of braces included in this review was 0.92, with the highest proportion (0.99) achieved with the Milwaukee brace. We found that use of the Milwaukee brace or another thoracolumbosacral orthosis for twenty-three hours per day effectively halted progression of the curve. Bracing for eight or sixteen hours per day was found to be significantly less effective than bracing for twenty-three hours per day (p < 0.0001).

--Linda

Celia
04-19-2005, 03:44 PM
Linda,


In all fairness to Canadian doctors, the article refers to a study which has yet to be approved by the NIH that is being done by Dr. Wright and researchers ( meaning other doctors ) at 19 other centres across North America. Sixty five out of four hundred and eighty children will be from Canada, I assume the other three hundred and fifteen children will be from the U.S. ? :D

I agree though, it seems like a redundant study.




Celia

LindaRacine
04-19-2005, 03:55 PM
Celia...

In my opinion, it's worse than redundant. The Canadian study will include fewer than 500 patients, some of whom will not be braced despite the fact that the proven natural history would dictate that they be so. (Who would knowingly want their child to be included in the observation cohort?) The SRS study included over 1,900 patients.

--Linda :-)

Celia
04-19-2005, 04:42 PM
Linda,

I wonder if there is any way to form a coalition against the proposed study. Are doctors the only ones who have a say in the matter ? Could we write to the NIH ?




Celia

Nicky's Mom
04-19-2005, 04:42 PM
Hi Celia,
I have sent you a private message....did you get it?
Cathy

LindaRacine
04-19-2005, 06:24 PM
Celia...

Sorry, I don't have a clue.

One can hope that the folks at the NIH are smart enough to know that definitive studies have already been published. I'm surprised that Shriners has already signed on.

--Linda

Shaun26
06-28-2005, 07:00 PM
Hi...

I found the following article this morning:

http://www.macleans.ca/topstories/health/article.jsp?content=20050419_100836_5800

Here's the text:


[I]Does bracing straighten a curved spine?

Decades-old treatment for scoliosis is supported by little scientific evidence

I'm not sure where this guy gets his information, but the Scoliosis Research Society funded a study, published in 1997, that showed definitively that bracing is effective in specific populations:

[INDENT]Bone Joint Surg Am. 1997 May;79(5):664-74. Related Articles, Links

A meta-analysis of the efficacy of non-operative treatments for idiopathic scoliosis.
Rowe DE, Bernstein SM, Riddick MF, Adler F, Emans JB, Gardner-Bonneau D.
Kalamazoo Center for Medical Studies, Michigan 49008, USA. rowe@kcms.msu.edu

With use of data culled from twenty studies, members of the Prevalence and Natural History Committee of the Scoliosis Research Society conducted a meta-analysis of 1910 patients who had been managed with bracing (1459 patients), lateral electrical surface stimulation (322 patients), or observation (129 patients) because of idiopathic scoliosis. Three variables - the type of treatment, the level of maturity, and the criterion for failure - were analyzed to determine which had the greatest impact on the outcome. We also examined the effect of the type of brace that was used and the duration of bracing on the success of treatment. The number of failures of treatment in each study was determined by calculating the total number of patients who had unacceptable progression of the curve (as defined in the study), who could not comply with or tolerate treatment, or who had an operation. The percentage of patients who completed a given course of treatment without failure, adjusted for the sample sizes of the studies in which that treatment was used, yielded the weighted mean proportion of success for that treatment. The weighted mean proportion of success was 0.39 for lateral electrical surface stimulation, 0.49 for observation only, 0.60 for bracing for eight hours per day, 0.62 for bracing for sixteen hours per day, and 0.93 for bracing for twenty-three hours per day. The twenty-three-hour regimens were significantly more successful than any other treatment (p < 0.0001). The difference between the eight and sixteen-hour regimens was not significant, with the numbers available. Although lateral electrical surface stimulation was associated with a lower weighted mean proportion of success than observation only, the difference was not significant, with the numbers available. This meta-analysis demonstrates the effectiveness of bracing for the treatment of idiopathic scoliosis. The weighted mean proportion of success for the six types of braces included in this review was 0.92, with the highest proportion (0.99) achieved with the Milwaukee brace. We found that use of the Milwaukee brace or another thoracolumbosacral orthosis for twenty-three hours per day effectively halted progression of the curve. Bracing for eight or sixteen hours per day was found to be significantly less effective than bracing for twenty-three hours per day (p < 0.0001).

--Linda

He's right. Look at the study that you've qouted.

First it says that "The number of failures of treatment in each study was determined by calculating the total number of patients who had unacceptable progression of the curve". ANY amount of progression is UNACCEPTABLE. If people are going to ambigously determine what is failure or not depending on how small or large a curve progresses, you're bordering into pretty deep territory. Success means zero progression. Failure means any amount of progression.

Then the study goes on to say that braces worn 23 hours of the day were the most successful. Is this surprising to you??? Think about it for two minutes. These people are wearing the brace for the WHOLE DAY! There is only one hour out of every day where they're not wearing the brace. This is NOT an effective treatment unless you consider having people wear braces every hour of every day of their lives. That's ridiculous. The whole basis of the study and what it found is so obvious and downright dumb. I wonder why some studies are done and what kinds of doctors actually conduct them because they're a waste of time and money.

Finally it ends by saying "The difference between the eight and sixteen-hour regimens was not significant". Again, logic tells us that if the uneven muscles are given opportunity to continue to bend the spine, they will. Having plenty of hours in each day allowing the spine to continue to bend and we will see scoliosis progress. And realistically most people who use braces will use them 8-16 hours or less so what happens in this group is more important than the resuts in the 23 hour group.

The study is a joke and all the studies that it cites are a joke. Taking a educated guess and one will have already known what the results would be. This does nothing to further scoliosis treatment. It just re-affirms how useless back braces are for long term treatment of scoliosis.

The doctors who are living in the dark ages are ones that think that attaching huge metal things called a brace to a human beings back for 23 hours a day is an acceptable treatment. Sadly, it seems to be most of them right now. The thinking in this area of study is so backward and defies all logic. It's the ultimate in arm chair academics, doctors and researchers steeped in frivolous studies instead of being concerned with reality and real solutions.

nutmeg
06-28-2005, 09:31 PM
As far as I can see both the new study, and the old one only look at short-term effectiveness of bracing .
Have any studies been done to show how effective bracing during adolescence is to prevent progression in later years. I remember a post (on another forum site) from a woman who had been "succcessfully" braced in adolescence, her curve remaining well below 40 degrees, but who discovered later in life (I think she was in her forties) that it had increased by over ten degrees

LindaRacine
06-28-2005, 09:44 PM
Shaun...

I hate to be so blunt, but since you're so smart, why don't you just develop something that will change our world, instead of preaching to us about how horrid all these doctors are... Can you image... putting us in barbaric braces and operating on our spines? When you do better, perhaps you'll deserve to be so critical. Until then, you're just one of us schmoes.

Braces are meant to hold curves until a child is skeletally mature. They've kept thousands of kids from ever having to have surgery. As long as most of the braced patients are kept from ever having to have surgery (and they are), the brace is better than nothing.

--Linda

Theresa
06-28-2005, 10:11 PM
WAY TO GO LINDA!!!!!!! :p

KRIS ATKINSON
06-29-2005, 04:24 AM
Shaun, my daughter's doctor DISCOURAGED the use of the brace when she originally was diagnosed, but was willing to do it. He gave us the statistics and we were freaked out at the thought of surgery, so we gave the brace a try, even though all the medical professionals gave little hope for it to work. As one surgeon said, "who know, maybe she will be the one to prove the medical field wrong!" And I know he honestly hoped she would, for her sake. If nothing else, the brace helped us all to accept her condition and gradually accept the need for surgery. I do agree with Linda, it gets depressing to constantly read your articles about trying to change the scoli world and how bad the current methods are. I would love to wait for future advances in surgery or whatever, and your thoughts do make sense, but my daughter is getting closer to the dangerous area as time goes by. She even asked me recently what will happen if she starts having trouble breathing because of the size of the curve. Do you think I want her hearing (or me thinking about) other future possibilities constantly, knowing they will be way too late for my daughter? I wish you the best for the future, but please share your findings with the research area until there is something more conclusive! Good luck and God be with you, Kris

Shaun26
06-29-2005, 05:10 AM
Shaun...

I hate to be so blunt, but since you're so smart, why don't you just develop something that will change our world, instead of preaching to us about how horrid all these doctors are... Can you image... putting us in barbaric braces and operating on our spines? When you do better, perhaps you'll deserve to be so critical. Until then, you're just one of us schmoes.

Braces are meant to hold curves until a child is skeletally mature. They've kept thousands of kids from ever having to have surgery. As long as most of the braced patients are kept from ever having to have surgery (and they are), the brace is better than nothing.

--Linda


Did you re-read the article you quoted? Where has everybody's reading comprehension gone? I feel like I'm in the twighit zone. There are doctors that disagree with it so I'm not the only one that feels this way. These are the doctors that need your support.

Where have I said there is something wrong with operating on spines? I'm encouraging operating on spines. The article you quoted barely supports what you say about braces.

I will do better. I'm buying my first house in two months. Then I'll return to University to get the 1.5 credits I need to complete my Bsc (I started an adult oriented online business 5 years ago and make money that I couldn't turn away from, so I took time off school 2 years ago). After I'm finished I will at least have some credibility and can either go to work on this on my own or with somebody already in the field.

The kind of helplessness so many with this condition seem to display is directly related to scientici progress made in this area (or lack thereof). While what I type may sound preachy it only sounds that way because I don't openly accept the conclusions being made about scoliosis without critically thinking about it for myself. Doctors, lawyers, and scientists are regular people like you and me. They can make mistakes and suffer from tunnel vision just like you and I can. They're not immune, nobody is. Few geniuses exist in the world in any field of work. I will definitely do my part to try and contribute something positive to scoliosis treatment. I hope to do you all proud. ;)

I also respectfully disagree with your statement that I can only be critical if I develop something of my own. If I'm not involved in Government, does that mean I don't have the right to be critical of my Government? Of coarse not, as a citizen affected by Government policy I can be critical. If what I say is ludicrous it will be dismissed by thinking people. If it holds merit, people will listen. Never, I repeat never take what anybody says, even authority figures when it comes to important issues, without thinking about it for yourself. Ask questions, get to know your doctor, their way of thinking. Not doing this has cost people their lives after going under the knife of hack doctor with no real credentials.

Shaun26
06-29-2005, 05:18 AM
Shaun, my daughter's doctor DISCOURAGED the use of the brace when she originally was diagnosed, but was willing to do it. He gave us the statistics and we were freaked out at the thought of surgery, so we gave the brace a try, even though all the medical professionals gave little hope for it to work. As one surgeon said, "who know, maybe she will be the one to prove the medical field wrong!" And I know he honestly hoped she would, for her sake. If nothing else, the brace helped us all to accept her condition and gradually accept the need for surgery. I do agree with Linda, it gets depressing to constantly read your articles about trying to change the scoli world and how bad the current methods are. I would love to wait for future advances in surgery or whatever, and your thoughts do make sense, but my daughter is getting closer to the dangerous area as time goes by. She even asked me recently what will happen if she starts having trouble breathing because of the size of the curve. Do you think I want her hearing (or me thinking about) other future possibilities constantly, knowing they will be way too late for my daughter? I wish you the best for the future, but please share your findings with the research area until there is something more conclusive! Good luck and God be with you, Kris

Because we cannot offer more effective treatments at this time, I would recommend using all available treatments that currently exist. It cannot hurt.

I'm advocating curing scoliosis, not simply stopping the progression of curves. Some of the studies have been done showing it is possible to reverse curves but they're not readily available or widespread treatments. Have a look at the botox article somebody posted or the article where it showed weight training reversing scoliosis. None of these on their own have completley corrected it but they have not been used in conjunction with each other either. So perhaps that is the answer.

What I'm saying is that there are so many more possibilities than what we're focused on. Let's widen our horizons.

LindaRacine
06-29-2005, 11:05 AM
Shaun...

You need to understand that we are not the medical community. We are people who suffer from scoliosis, most of us with large curves. Perhaps you could find a forum for medical professionals who want to debate. I'm sure they're all much more qualified to argue with someone as smart as you.

--Linda

Celia
06-29-2005, 11:31 AM
Obviously I'm in the minority :D but I do find Shaun's way of thinking quite original and refreshing. O.K now I'm in trouble, right ? :eek:



Celia

carebear23
06-29-2005, 12:55 PM
Maybe Shaun could post his own thread and people could discuss things with him in there instead of him posting the same things in every thread?

I don't know about you guys, but when I come online I click the "New Posts" button and lately I have been spending an extra hour online just to get through repetative discussions.

I love coming on here and reading about people's personal experiences with scoliosis. I find this online community so helpful in that regard. But when it comes down to newer forms of treatment.. I'd have to agree that would be better kept in the research forums since most of us have enough on our minds with upcoming surgeries and the post surgery conditions of our children and friends.

LindaRacine
06-29-2005, 01:05 PM
Maybe Shaun could post his own thread and people could discuss things with him in there instead of him posting the same things in every thread?

Good idea!

Shaun26
06-29-2005, 04:16 PM
Shaun...

You need to understand that we are not the medical community. We are people who suffer from scoliosis, most of us with large curves. Perhaps you could find a forum for medical professionals who want to debate. I'm sure they're all much more qualified to argue with someone as smart as you.

--Linda

I agree that's a good idea. Do you know of any such forums? When new treatments are ready everybody will benefit from them.

I think that people are taking my posts the wrong way. I think that people are assuming that:

1) I'm bashing all medical professionals who are researching scoliosis (not true)
2) I'm pompous and think that I'm smarter than everybody else (not true)
3) I'm not offering support or help (not true)

Try to support any of the above and you won't be able to. Please read my posts carefully.

None of these things can be supported. If somebody comes on to a forum saying he believes their are areas of research not being done that should because his own experience with scoliosis leads him to think their are contributing factors that aren't being investigated, how is he a bad guy?

If somebody comes on to a forum saying that current non-surgical treatments aren't very good because they don't correct and often don't stop progression of scoliosis, how is he a bad guy?

If somebody comes on to a forum saying that studies show that different types of treatments (botox, weight training) may be promising for mild and medium scoliosis patients, how is he a bad guy?

If somebody comes on to a forum saying that it may reduce your suffering if you take up some questions with your doctor or make him privvy to new possible treatments, how is he a bad guy?

I'm in favor of a wider range of treatments than what is currently offered, preferrably ones that show better results. How does that make me a bad guy?

I would have thought everybody on this board would agree.

Shaun26
06-29-2005, 04:18 PM
Maybe Shaun could post his own thread and people could discuss things with him in there instead of him posting the same things in every thread?

I agree, I wish I had only started one thread. Perhaps all of these threads can be combined into one?

Shaun26
06-29-2005, 04:28 PM
Obviously I'm in the minority :D but I do find Shaun's way of thinking quite original and refreshing. O.K now I'm in trouble, right ? :eek:



Celia


Thanks. I don't mind being ridiculed, belittled, or ostrasized for what I'm saying. I don't understand it, but it's not something that concerns me. It will not sway me from doing what I think is right to make people aware of what treatments the medical community appears to be on the cusp of, or of expressing my dissatisfaction with most current non-surgical treatments, nor for advocating more research and more treatments. This should be uplifting and invigorating, not turned into a 'you think you're smarter then' or 'stop your whining' discussion.

It's like when you tell your children to eat vegetables or to go to school. They may not understand it, they may not like it, but you know that it's the right thing for them, even if they hate you for it.

Celia
06-29-2005, 08:23 PM
I don't mind being ridiculed, belittled, or ostrasized for what I'm saying. I don't understand it, but it's not something that concerns me. It will not sway me ...


Shaun,

Don't let it get you down. Public forums can be ruthless...but hey, if you can't insult a complete stranger who can you insult ? :D Although I don't agree with your views on bracing, I am thankful for the info and links provided. My daughter started out with a very severe curve and now she's almost completely straight ( thanks to casting ). She's only 4 1/2 and has a lot of growing to do for the next 12 years. I'm always looking for success stories or new ideas as to how I can help my little girl. I hope she never needs surgery. Maybe strength training as an adjunct to bracing is the key. Do you think if she wore one of those little wrist band weights on her right wrist it would help strengthen the concave side of her back ? ( her curve is to the left )

I read that it's impossible to sue an orthopaedic surgeon for malpractice ( God only knows there are quite a few mishaps out there !) because no doctor will testify against them in a court of law. Pretty scary, huh ? :rolleyes:



Celia

LindaRacine
06-29-2005, 08:43 PM
Celia...

In my experience it is next to impossible to sue a surgeon. That is not, however, because they're protecting one another (at least in the two cases of which I've been privy). Instead, it's because the surgeon who should have been sued intimidates any surgeono who might be an expert witness. These surgeons are pretty busy, and testifying in the initial case and then fighting a lawsuit for doing so(even one that they would almost certainly win), is just way too costly.

I would love to see the system changed so that civil suit losers are forced to pay the winner's legal fees along with punitive damages for bringing the suit in the first place.

(Just another soapbox rave by Linda.)

Regards,
Linda

Shaun26
06-30-2005, 04:45 AM
Shaun,

Don't let it get you down. Public forums can be ruthless...but hey, if you can't insult a complete stranger who can you insult ? :D Although I don't agree with your views on bracing, I am thankful for the info and links provided. My daughter started out with a very severe curve and now she's almost completely straight ( thanks to casting ). She's only 4 1/2 and has a lot of growing to do for the next 12 years. I'm always looking for success stories or new ideas as to how I can help my little girl. I hope she never needs surgery. Maybe strength training as an adjunct to bracing is the key. Do you think if she wore one of those little wrist band weights on her right wrist it would help strengthen the concave side of her back ? ( her curve is to the left )

I read that it's impossible to sue an orthopaedic surgeon for malpractice ( God only knows there are quite a few mishaps out there !) because no doctor will testify against them in a court of law. Pretty scary, huh ? :rolleyes:



Celia

Hi Celia,

I think bracing is probably effective if scoliosis is found early in life. Since youre daughter is young, her body is still developing and her bones and muscles are still growing and haven't 'settled' completely. If bracing and other treatments are used I can see that as an effective treatment.

I'm sure there will be exceptions to what I'm saying, but it seems to me that bracing for mature or adolescents who have already gone thru most of their physical development seems like putting a bandaid on an open wound when the curve is severe.

Early detection is important which is why I think it would be great if schools screened for it year after year until maybe 16 years of age. I sure wish they did when I was in school.

If what you're doing is working well now, perhaps you can stick with it. But it can't hurt to ask your doctor about additional ideas you may have.

Best of luck to you and your daughter. ;)

mariaf
10-07-2005, 03:52 PM
I don't agree with the statement "most braced patients are kept from ever having to have surgery". Any figures I have ever seen or read suggest this is true for perhaps 50% of the patients AT BEST. Don't get me wrong, if nearly half these kids avoid surgery, that's great - but I know tons of kids who were braced for years only to end up needing surgery.

In any event, I think Shaun's heart is in the right place. A lot of us think there should be better alternatives - as, apparently, do some in the medical community. While some doctors appear to be content with the status quo; others are pioneers (i.e., someone like a Randal Betz) and make it their life's work to try to improve the lives of those with scoliosis, coming up with new techniques every day. Let's hope we see more and more of the latter.

LindaRacine
10-07-2005, 10:12 PM
Hi...

Not sure where you're getting your info, but I don't think I've ever seen a bracing study that showed anywhere near 50% failed treatment. You can find links to many brace studies here:

http://www.scoliosislinks.com/BracingResearch.htm

--Linda

mariaf
10-10-2005, 08:02 AM
I was actually first told this by a prominent doctor affiliated with the Hospital for Special Surgery in New York. Other doctors I have subsequently spoken with have agreed that bracing works for some of the patients - but none would ever say that it was most or even a majority.

LindaRacine
10-10-2005, 11:26 AM
Maria...

I think you must have misunderstood. Check out the abstracts from the link that I posted.

--Linda

mariaf
10-10-2005, 11:34 AM
I can assure you that I did NOT misunderstand. I'm not trying to debate this with you - I'm simply repeating what I was told - that for most kids who are braced there's a chance they'll need surgery at some point. When I pressed for odds, I was told "about 50/50".

LindaRacine
10-10-2005, 11:48 AM
Hi Maria...

Would you be willing to tell me who the doctor is?

--Linda

mariaf
10-10-2005, 11:52 AM
After checking some of the links you posted, I see that the results are based on follow up periods of, for example, 1 year - 23 months. In contrast, I was referring to a patient EVER needing surgery. Perhaps that explains the difference in the figures.

LindaRacine
10-10-2005, 12:09 PM
How about this one?

Spine. 2003 Sep 15;28(18):2078-85; discussion 2086. Related Articles, Links

Back pain and function 22 years after brace treatment for adolescent idiopathic scoliosis: a case-control study-part I.

Danielsson AJ, Nachemson AL.

Department of Orthopaedics, Sahlgrenska University Hospital, Goteborg University, Sweden. danielsson.aina@telia.com

STUDY DESIGN: A consecutive series of patients with adolescent idiopathic scoliosis and brace-treated (BT) between 1968 and 1977 before age 21 years (BT: n = 127; 122 females and 5 males) were followed-up at least 20 years after completion of the treatment. OBJECTIVES: To determine the long-term outcome in terms of back pain and function in patients BT for adolescent idiopathic scoliosis. SUMMARY OF BACKGROUND DATA: Few reports on long-term outcome of back pain and function have previously been presented for consecutive groups of these patients. MATERIALS AND METHODS: One hundred ten (87%) BT patients were reexamined as part of an unbiased personal follow-up. This included a clinical examination, evaluation of curve size (Cobb method), and degenerative findings in full standing frontal and lateral radiographs. Validated questionnaires in terms of general and disease-specific quality-of-life aspects as well as present back and pain symptoms were used. One hundred nine had complete follow-up. An age- and sex-matched control group of 100 persons was randomly selected and subjected to the same examinations. RESULTS: The deterioration of the curves was a mean of 7.9 degrees for all curves, excluding the only patient who underwent operation after 4 years (increase = 27 degrees). The patients had significantly more degenerative disc changes than the controls. Lumbar and thoracic back pain, although mild (2.7 on visual analogue scale), was significantly more frequent among the patients than the controls (75 vs. 47%, P = 0.0050 and 35.8 vs. 22.0%, P = 0.033, respectively). Only 24% of the patients admitted daily pain and analgesics were sparsely used.The patients had a slightly, but significantly, worse back function as measured by the Oswestry Disability Index (9.2 vs. 4.8, P = 0.0012) and general function score (7.7 vs. 4.2, P = 0.0006), but general health-related quality of life was not affected. No differences could be seen in sociodemographic variables between the groups, except for having ever been on sick leave because of the back (38% vs. 19%, P = 0.0036). Furthermore, no differences could be found between patients with different curve types (single thoracic, n = 50; lumbar, n = 19; double curves, n = 40). No correlation could be found between pain and its localization and curve size, an increase of at least 10 degrees since end of treatment, curve type, degenerative changes on any of the two lowest lumbar disc levels, body mass index, or smoking. CONCLUSIONS: More than 20 years after brace treatment for AIS, minimal pain and no dysfunction occurred compared with normal controls. Compared with surgically treated patients with a mean end result similar to this group, no significant differences were found except that BT patients experience more affective components of their pain.

mariaf
10-10-2005, 12:29 PM
Linda,

As I said I don't wish to have a debate on this. Personally, I'd prefer if you were right and bracing did work so well!!! Nonetheless, I'm not going to say that I was never told something when in fact I was (on more than one occasion). Or that I don't know an awful lot of patients that ended up needing surgery after being braced when in fact I do. Even doctors don't know everything about scoliosis so I certainly won't claim to. In addition, I'm sure that many factors have an influence on outcomes (curve size, age, daily hours braced, etc., etc.). So let's just leave it at that.

Regards,

Maria

Celia
04-10-2007, 02:25 PM
I was doing a search on the internet and found this interesting study (NOT!!!!). It's referred to as: Bracing in Adolescent Idiopathic Scoliosis Trial (BrAIST). The main premise is that the effectiveness of bracing is *still* in doubt! One good thing about the link is that it lists hospitals participating in this randomized "study" and hence we can all avoid them like the plague!!! Study chairs or principal investigators appears to be:

Stuart L. Weinstein, MD, Principal Investigator, University of Iowa
Lori A. Dolan, PhD, Study Director, University of Iowa

Primary Outcomes: Progression of Cobb angle to greater than 50 degrees (proxy for surgical indication); Cessation of skeletal growth

Secondary Outcomes: Clinical; Radiographic; Psychosocial

Expected Total Enrollment: 500

Study start: February 2007; Expected completion: August 2010

Bracing is currently the standard of care for the treatment of adolescent idiopathic scoliosis (AIS). Despite many years of research, the effectiveness of bracing is still in doubt, and it is not known with any certainty, which, if any, patients with AIS will respond favorably to bracing. Many risk factors for curve progression have been observed, yet the science of bracing has not advanced to the point where reliable estimates of the risk of progression to surgery are possible for an individual patient, or even for a group of patients presenting with a common set of risk factors. Therefore, patients undergo this treatment without knowing the probability of success or failure. This trial is a multicenter, randomized, controlled study to quantify the effectiveness of bracing relative to observation alone for the treatment of adolescent idiopathic scoliosis (AIS). The primary aim of the study will be to measure the relative risk of curve progression to greater than 50 degrees in the two treatment arms. This outcome is significant because it indicates a high risk for continued curve progression throughout adulthood, and is therefore the parameter at which fusion and instrumentation are generally indicated. We will concurrently measure and compare the quality of life and psychosocial adjustment of these adolescents. We will also estimate the relationship between bracing dose (wear time) and curve response and to develop a predictive model for the outcome of curve progression. 23 states in the U.S. mandate school screening, which leads to an estimated cost of $41 million dollars annually. If bracing is not effective, these programs could be eliminated and the resources directed toward other adolescent health or social problems. On the other hand, discovering the most effective dosing schedules and ordering more appropriate treatment could lead to a decrease in the surgery rate and diminish the associated burden to the Medicaid budget. Therefore, this study, whether positive or negative, will have substantial impact on public health.

http://clinicaltrials-nccs.nlm.nih.gov/ct/show/NCT00448448;jsessionid=D036D04D35F037A63C9648D04E3 37046?order=15


*

structural75
04-10-2007, 06:04 PM
CONCLUSIONS: More than 20 years after brace treatment for AIS, minimal pain and no dysfunction occurred compared with normal controls. Interesting conclusion given that the 'results' reported in the few sentences preceding this statement read as follows:


The patients had significantly more degenerative disc changes than the controls.


Lumbar and thoracic back pain, although mild (2.7 on visual analogue scale), was significantly more frequent among the patients than the controls (75 vs. 47%, P = 0.0050 and 35.8 vs. 22.0%, P = 0.033, respectively).


The patients had a slightly, but significantly, worse back function as measured by the Oswestry Disability Index (9.2 vs. 4.8, P = 0.0012) and general function score (7.7 vs. 4.2, P = 0.0006)"..had a slightly, but significantly, worse back function..." What kind of contradictiory statement is that? .."slightly, but significantly, ..."????


No differences could be seen in sociodemographic variables between the groups, except for having ever been on sick leave because of the back (38% vs. 19%, P = 0.0036)."No differences could be seen... " except a 50% HIGHER INCIDENCE OF SICK LEAVE! That qualifies for "no differences"???


No correlation could be found between pain and its localization and curve size, an increase of at least 10 degrees since end of treatment, curve type, degenerative changes on any of the two lowest lumbar disc levels, body mass index, or smoking. Smoking???? What does that have to do with this study???

My point is this: Using studies to validate a point must be taken with a grain of salt. Any good researcher, scientist or Doctor knows that their are good studies and bad studies. They can be influenced and compromised by many factors including personal/professional gains and benefits which would be derived from a particularly biased "conclusion".

As for the upcoming study that was just posted... it sounds like an unbiased approach to me. It's extensive and contains several parties who don't appear to have anything to gain personally from it's outcome, one way or another. I don't think it's fair to discredit this type of endeavor, even if it suggests a potential premise that one may disagree with. It's apparent that bracing is effective in some cases and not in others. Which means that we need to begin looking beyond the same two methods (bracing and surgery) that we've been using for a long time now to come up with something that is more consistent, intelligent and less invasive. At the same time it doesn't mean that we have to give up what we have... but open some new doors for consideration. Because the fact remains that although some of you ('the *we* of this forum) may be having success with bracing, others out there are not.

structural

p.s.- It amazes me that a forum "moderator" could be so partial in their privileged role. This thread sheds more light onto the attempts at devaluing and discrediting others opinions. It's no wonder there's such a limited point of view on this forum.

Celia
04-10-2007, 09:21 PM
It's apparent that bracing is effective in some cases and not in others. Which means that we need to begin looking beyond the same two methods (bracing and surgery) that we've been using for a long time now to come up with something that is more consistent, intelligent and less invasive. At the same time it doesn't mean that we have to give up what we have... but open some new doors for consideration. Because the fact remains that although some of you ('the *we* of this forum) may be having success with bracing, others out there are not.

I'm sure many a parent would cringe at the thought of having their own precious child randomly selected as the control subject for the greater good of this idiotic "study". Not having a child with scoliosis you obviously can't relate. As for the collective "we" when did I become a representative for the masses?


*

structural75
04-10-2007, 11:04 PM
23 states in the U.S. mandate school screening, which leads to an estimated cost of $41 million dollars annually. If bracing is not effective, these programs could be eliminated and the resources directed toward other adolescent health or social problems.This, I would agree, is not a very intelligent proposal... Otherwise, given the number of folks out there who are unfortunately following their Doctors orders to "wait and watch", I don't see how this study would be to blame for that if they're already taking the passive approach on their own. If I had it my way I'd make it illegal for doctors to avoid treating scoliosis as they often do (the wait and watch approach). Then I'd toss out this pseudo physics-based scientific approach to physical medicine and get people into treatment rather than watching them sit on their hands waiting for a 'study' to appear on the internet to validate their sense of well-being!

You're harsh comments about avoiding associated hospitals participating in this study is inappropriate. Where do you get the right to insult hospitals such as Shriner's who have helped thousands of children with serious conditions beyond scoliosis?


I'm sure many a parent would cringe at the thought of having their own precious child randomly selected as the control subject for the greater good of this idiotic "study".Just as many would cringe at the idea of continuing to treat scoliosis with a method that does absolutely nothing to attempt to address or acknowledge it's actual cause, known or unknown. You're forcing the body against its unfortunate, yet inherent will and then you wonder why curves often progress again later on... Meanwhile, you have no interest in considering more intelligent, comprehensive and dynamic approaches toward actual potential resolution of influential factors... Talk about "idiotic".

Sorry Celia, but this sort of thing is happening in the field of medicine everyday and I don't hear many folks complaining... human trials for drugs, etc.... And just imagine what the 'original' patients using spinecor... I mean the very first people to wear a 'soft' brace... How would you justify that endeavor without knowing what you know now? That could have potentially ruined a lot of lives by failing and consuming their small window of opportunity for real change had it not worked.


As for the collective "we" when did I become a representative for the masses?
I have know idea who decided that one...

If I remember correctly... *we* determined Dr. Weiss didn't get adequate training in fitting the Spinecor brace and hence his results were flawed :D


Not having a child with scoliosis you obviously can't relate.I'd kindly suggest keeping the personal comments to yourself... you don't know what my child has!

Celia
04-11-2007, 12:18 PM
Your attempts to start an argument with me are an exercise in futility! I've once again reported you to Joe O'Brien!


*

structural75
04-11-2007, 01:32 PM
Celia,

Thank you... once again.
Your attempts to start an argument with me are an exercise in futility! Don't remind me... ;)

What was your point in dredging up this thread that ended on October 10, 2005??? Are you deliberately seeking out topics that you can discredit even further? Is it not bad enough that you're friends on this forum drove off some other previous members on this thread years ago in the same manner that you all have tried with me?

It's perfectly clear that your behavior leans towards foul mouthing anyone with a different opinion or perspective than yourself... You even went so far as to dig up this old thread... Why not start a new one with your recent 'findings'?

I was doing a search on the internet and found this interesting study (NOT!!!!). It's referred to as: Bracing in Adolescent Idiopathic Scoliosis Trial (BrAIST). The main premise is that the effectiveness of bracing is *still* in doubt! One good thing about the link is that it lists hospitals participating in this randomized "study" and hence we can all avoid them like the plague!!! Study chairs or principal investigators appears to be:Yes, that's right... it is NOT effective for everyone, or even close to that. So give others less fortunate than yourself an opportunity for a more objective view and exploration on matters.

cherylplinder
04-12-2007, 04:04 PM
We Will Respond To Your Comments To Provide Additioinal Insight To Balance Your Input, But You Can't Start An Argument.

You Still Need To Find A Forum For Frustrated Practitioners, And Stop Attacking Members Of This Forum.

structural75
04-12-2007, 04:41 PM
Cheryl,

Did the points I raised (not attacks!) in these previous posts just go completely unheard or unnoticed? Why seak out and pull forth a post from two years ago when a new thread could have been started? It just seems as though some folks here actively engage in providing fuel for their fire.


We Will Respond To Your Comments To Provide Additioinal Insight To Balance Your Input,That sounds like a great idea, so why don't any of you do that? I don't understand??? What you appear to be doing is making unintelligent remarks about "idiotic" studies and "avoiding hospitals like the plague"... That doesn't qualify as "additional insight" to balance my input... does it? If I posted a study with such contradictory remarks and conclusions in it you folks would tear me to shreds.... It seems as though I'm always having a one way conversation because all you guys do is insult other forum members, doctors, practitioners, hospitals and methods that you don't subscribe to or understand.

And what's this "we" all about? Don't you folks have an independent voice? "We will respond" makes it sound as though other people on this forum have to present themselves to 'the board of trustees'... give me a break.


You Still Need To Find A Forum For Frustrated Practitioners, And Stop Attacking Members Of This Forum.Is this not an insult or attack??? How is this constructive or "balancing". The frequency of frustrated practitioners will decrease on the day when ignorance is overcome by education and people begin to make choices for themselves rather than following the masses... But thank you for thinking of my well being anyhow.

structural75
04-12-2007, 04:53 PM
Cheryl,

One last thing... I've noticed in reading many past threads that it is very rare that members of this forum argue, EXCEPT for those of you that frequently get into it with me. I noticed that some of these folks have gotten into arguments with other members as well (I'm certainly not the only one who's come under the wrath of a select few). So why is it that the consistency in arguing doesn't come from me, but from the very people you defend constantly? I've only been on this forum for less than a year and I've read plenty of arguments from your 'friends' with other folks previous to that.... :rolleyes:

Celia
04-12-2007, 05:13 PM
Structural,

I don't see why I have to explain to you why I put the BrAIST study in this thread because it is the *very* same study that was referred to 2 years ago! This is "not" a Canadian study, it is being led by some very influential doctors in the United States - Dr. Weinstein, I believe. A number of SRS studies have already spelled out the conditions required for successful bracing during the adolescent growth spurt/ Peak Height Velocity Period and that is to brace curves when they're still below 30 degrees. Granted there are a lot of variables involved but I don't believe "doing nothing" and watching these children progress to surgery levels is the way to go. If you can't *see* why this study is using innocent helpless children as guinea pigs in the control group, THEN I CAN'T HELP YOU!!!! Maybe you enjoy playing devils advocate????


*

zuma
04-12-2007, 05:50 PM
You Still Need To Find A Forum For Frustrated Practitioners, And Stop Attacking Members Of This Forum.[/QUOTE]

Thats a bit harsh on structural from the posts i have read which is most of them its not all been one way traffic and structural does seem to be trying to offer an alternative point of view and often has evidence to back his arguments. I see and can see all sides of the argument, you are all very pasionnate people with evidence in abundance to support your paticular points of view. But that should not be used as an excuse to pick on someone. If someone posts something then they should expect to recieve a reply, if they do not agree with the reply then just shrug your shoulders, accept someone is disagreeing with you and move on. But i do think its time to leave the poor guy alone

structural75
04-12-2007, 06:20 PM
Celia,

I want to thank you for the first two thirds of you reply... it felt as though you were actually speaking to me for once... again, thank you!

As for the last couple of comments... I agree with you that "waiting and watching" is a horrible approach. But the fact is that there are a lot of people out there doing just that upon their own will or recommendation of their doctor. Even if this study didn't take place those folks would still be "waiting and watching". So it seems sensible to apply the information from their decision to help shed some more light on the topic. I'm not necessarily a stark supporter of this study, nor am I against it... but why not make use of data that would otherwise be lost if just ignored?? I don't know... ??? I certainly don't think the book has been written on the effectiveness of bracing, that's for sure. This one seems to be less biased than others by incorporating many hospitals from several geographic regions... .

If you can't *see* why this study is using innocent helpless children as guinea pigs in the control group, THEN I CAN'T HELP YOU!!!! Maybe you enjoy playing devils advocate???? Yes, I see your point... but as I mentioned before, didn't the very first recipients of the spinecor brace take a risk as guinea pigs with the potential for failure and lost opportunity for correction? I just feel that's risky as well... but that's the nature of clinical trials... even if we don't like it or agree with it, someone is always at risk.

Sincerely Celia, I don't play devil's advocate to tick anyone off or get under your skin... I actually think it's healthy to play devils advocate otherwise we don't grow and learn. It's always necessary to challenge beliefs and ideas, not to discredit them, but to ensure that we're covering all of the bases and being thorough in our considerations.

At the end of the day I do not subscribe to any single belief or opinion... I only follow the leads that show promise for something better. In the case of scoliosis I think it's dangerous to marry oneself to any single approach or method, as it will never apply generically to all individuals. There are reasons why some have success with a particular approach and others don''t... and vice versa. Although some avenues of exploration may not suit your needs in particular, others have not had the success you have with your chosen methods so they should be encouraged to explore other options, not discouraged.

I hope that clarifies where I'm coming from here.

structural

MATJESNIC
04-12-2007, 06:55 PM
Remember that some people are more than willing to try or to not try new things because they don't like the alternative. For example, we couldn't put Nicole in the prescribed hard brace. We just couldn't do it. And Nicole wouldn't have worn it. No way. So if someone would have asked us to try this brand new Spinecor that has never been used before, we most likely would have said, "Yes" because the alternative would have been to do nothing.

If the Spinecor hadn't been invented and we were adamant on not putting her in that hard brace, then maybe we would have done nothing because we couldn't imagine her having a life for four years in middle and high school in a hard brace. Physical movement is a huge part of her life and it goes against so much of what we believe.

structural75
04-12-2007, 07:13 PM
That's a good point... and I'm not against the idea of trying something new... it certainly beats doing nothing, although I suppose the truth of the matter is that some opt for nothing at all even when given a choice for some reason. Maybe they've been convinced that nothing else is going to have any effect so why even try, and since they may be against the idea of bracing for other reasons that would leave them to sit idle.... ???

I also wonder about the folks who can't afford the spinecor or the cost of travel associated with going to someone who can fit it properly. Is they're option reduced to nothing by eliminating hard and soft bracing? I like to think not but the fact is most would believe that those are their only options so it's likely the case.

mariaf
04-13-2007, 08:31 AM
You Still Need To Find A Forum For Frustrated Practitioners, And Stop Attacking Members Of This Forum
Thats a bit harsh on structural from the posts i have read which is most of them its not all been one way traffic and structural does seem to be trying to offer an alternative point of view and often has evidence to back his arguments. I see and can see all sides of the argument, you are all very pasionnate people with evidence in abundance to support your paticular points of view. But that should not be used as an excuse to pick on someone. If someone posts something then they should expect to recieve a reply, if they do not agree with the reply then just shrug your shoulders, accept someone is disagreeing with you and move on. But i do think its time to leave the poor guy alone

I agree 100% with Zuma. Structural certainly has the same right as the rest of us to post his opinions, ideas, etc. Those that want to read them can - and others can choose not to. Isn't that what the forum is all about? I, for one, want to hear ALL sides of every issue. Then, as an intelligent adult, I can decide for myself what, if any, advice to follow.

cherylplinder
04-13-2007, 09:55 AM
I don't mind if he posts his opinions,but he appears to hunt Celia's posts and then he attacks her in his reply.

mariaf
04-13-2007, 10:04 AM
As Zuma very accurately stated, it hasn't all been one way traffic.

I have no interest in taking sides - I would jump to anyone's defense if I felt they were being picked on unfairly - and from where I'm sitting - if I am going to be honest - that is what is happening here with Structural.

If we allow that to happen to any member, then some people may be afraid to post their honest opinions - and we put the integrity of the forum at risk.

cherylplinder
04-13-2007, 10:15 AM
He even attacks the moderator, (I assume he is refering to Linda) in his posts on this thread. He accuses Celia of intentionally dredging up old posts. His comments to her about her posts are inflamatory, not entirely informational.

Certainly, the traffic is not always one way, but I think he seeks her posts and picks on her.

I am tired of it.

mariaf
04-13-2007, 10:19 AM
Cheryl,

I truly respect your right to your own opinion and view on this. As I hope you respect mine and others - even if you do not agree.

cherylplinder
04-13-2007, 10:22 AM
Maria,
I admire and respect you. I just love you. You are an incredible support for parents of this forum and have been for me.
It doesn't bother me that you see this differently.
Hugs,
Cheryl

mariaf
04-13-2007, 10:29 AM
Cheryl,

I feel the same way. You are always there to offer your support to others as well. I see you do it all the time without hesitation. You are one of the many members who make this forum the great place that it is.

Now, hopefully, all of this other nonsense will cease (on all sides) and we can get back to doing what really matters - helping and supporting each other.

best,

Maria

Celia
04-13-2007, 10:33 AM
Celia,

It's perfectly clear that your behavior leans towards foul mouthing anyone with a different opinion or perspective than yourself... You even went so far as to dig up this old thread... Why not start a new one with your recent 'findings'? Yes, that's right... it is NOT effective for everyone, or even close to that. So give others less fortunate than yourself an opportunity for a more objective view and exploration on matters.

This is constructive criticism?????? I can find many more examples if you want me to. He has attacked me many times and accused me of dictating discussions. I have reported him to Joe O'Brien! Maybe Zuma and Structural can have some interesting discussions on their own since they get along famously! I would prefer if he stopped harassing me, quite honestly.

As for the study, I value *ALL* human life and *ALL* children, regardless of economic/religious background should be given a fair chance.




*

structural75
04-13-2007, 10:49 PM
Cheryl,

I don't mind if he posts his opinions,but he appears to hunt Celia's posts and then he attacks her in his reply.Sorry you see things that way... my public profile/previous posts are available for anyone to view... it clearly shows that I've put forth plenty of posts without Celia present only to find her on my heels... . This has been a two way street as others have pointed out and I'd appreciate it if you let it be at that. Continuing to provide a biased defense for your friend is not making matters any better.

Also, my reply to Celia's post on this thread was actually two-fold... 1. After reading Celia's post I was interested in reading some of the previous postings as well. The first half of my 'reply' actually pertained to Linda R's post that attempted to highlight a conclusion of a study that completely contradicted the actual evidence and findings in the study. I found this really misleading and discouraging as I'm sure others would take me to task for the same. 2. The second part of my reply was both an objective and opinionated response to the study Celia posted... You can go back and re-read it.. nowhere do I "attack" her in any way. I simply gave my thoughts on it, shared a perspective that I didn't feel was being acknowledged and thought it was worthwhile to keep the door open to possibilities.

My reason for 'appearing' to reply frequently to Celia's posts is that she is one of a few people on this forum who has a tendancy to quickly dismiss something wihtout fair or knowledgable consideration. As others have said, if we don't agree with something let it be... but I find some of her brash comments on certain topics to be unwarranted and disgraceful toward other people/methods. I respect her opinion to agree or disagree with something but I can't respect or accept her negative sarcasm and criticism when the topic at hand could be of benefit for someone else.

I don't think it's anyone's job here (including me) to be offering "constructive criticism"... I don't know where that idea came from... ? We are all welcome to agree, disagree or remain indifferent... but I don't think her name calling and negative personal remarks about me need to be a part of that process.

Celia,
As for your last post.. I don't see how the quote of mine you attached is an attack nor did I ever say that it was an attempt at "constructive criticism". It's just my opinion/thought on matters... if you don't like it that's OK... I'm not insulted by you disagreeing with me but I won't tolerate the rudeness that comes along with it.

And please leave Zuma, or anyone else, out of this. I'm sure Zuma doesn't agree with everything I have to say (or possibly anything at all), but she is showing respect for others' opinions and I'm sure she would expect the same in return. Throwing her into the pit with me doesn't help matters either.

structural

cherylplinder
04-14-2007, 09:58 AM
Celia is knowledgeable and intelligent and frequently speaks against expensive treaments that are unproven.

You attack her for that. And you do PERSONALLY attack her. If you were honest with yourself you would at least admit it.

Read some threads on infantile with results posted over a length of time. There are plenty. I believe she has been instumental in saving more than one life.

I really would like for you to leave her alone. She is my friend. She did help me through a really rough time. I am not going to remain silent when I believe you are unfairly attacking my friend on a forum she comes to for SUPPORT.

She has been through more with scoliosis than you will ever dream. It is wrong for a practitioner to attack a parent that is here for support, going through a difficult time with scoliosis(every appointment is nerve racking, every day a day for observation on your own{does it look worse today?}).
You don't have scoliosis or have a child with scoliosis. You will never know what that is like.

cherylplinder
04-14-2007, 10:57 AM
I don't think it is necessary for you to post a response to everything she says that you disagree with. You don't have to feel an obligation to refute her posts.

No one on this forum takes another parents opinion as gospel. We are smarter than that, capable of digesting information on our own.

Celia
04-14-2007, 12:38 PM
Cheryl,

It's very sweet of you to say those things! I do come here and will continue coming here for support. You're all like an extended family to me - I've learned so much!!! I was looking at Deirdre's back this morning and she looked soooooo good! I can actually see the day when scoliosis will not be in her future!!!! Never mind about Structural75, I finally wised up and put him on my "ignore list" so I won't be able to see any of his posts :D There is no room in my life for bitterness and hostility especially when it involves a stranger! We parents are helping each other through this, all the way!!!!


*

structural75
04-14-2007, 01:36 PM
Cheryl,


Celia is knowledgeable and intelligent and frequently speaks against expensive treatments that are unproven. I agree with you... She is very knowledgeable about several things, but she also could stand to open her perspective a little and consider learning about the things that she's NOT familiar with. I simply said that "some" of her posts contain the contrary, usually when she is not familiar with something or persistent skepticism overrides reasonable logic. Which I can completely understand as she is a concerned and caring parent of a child with scoliosis. However it still doesn't justify the negativity without warrant. It inhibits others from posting their thoughts and experiences outside of what she deems 'acceptable'. I'm against fraudulent individuals as well... However as a practitioner who has worked with many children and adults with scoliosis I can say with honesty and accuracy that there are other effective adjunctive methods regardless of whether a study exists to support it... there certainly are no studies that exist to negate the application of my profession to scoliosis either. In fact, this years International Conference on Spinal Deformities in Boston will have a keynote speaker by the name of Dr. Tom Findley (M.D. in Physical Medicine) and colleague of mine... If my profession was an invalid scam then why is this colleague of mine a keynote speaker at the conference? There must be something legitimate there... .

I confront her content, tone and occasional negative intention.. I don't call her insidious names and such... .



It is wrong for a practitioner to attack a parent that is here for support,Just as it is wrong to attack a practitioner who can offer valuable advice or insight to people and parents here. All to often I see responses to questions that are simply incorrect... I'm not trying to pick on anyone, I'm just offering a more educated and accurate reply so that people aren't misled by someone's 'educated' guess. I don't have all of the answers, but when I can contribute I do my best... I'm sorry if I step on your friends toes in the process but she has made some inaccurate statements and as you pointed out, she is quite influential on this forum... .


You don't have scoliosis or have a child with scoliosis. You will never know what that is like.Do you treat your Doctor with this mentality? I may not know for that reason, but I have personally worked with many individuals with scoliosis, so I think it's safe to say that I have tremendous compassion, sensitivity and support for my clients as I see and hear first-hand what they are going through. I'm sorry that's not good enough for you.



I am not going to remain silent when I believe you are unfairly attacking my friend on a forum she comes to for SUPPORT. "unfairly attacking" your friend... haven't we gotten anywhere in this discussion?


No one on this forum takes another parents opinion as gospel. We are smarter than that, capable of digesting information on our own.It's not about persuading the masses Cheryl, it's about being allowed to speak my mind without her name calling and trashing me personally or professionally.

Can we please move forward?
structural

MATJESNIC
04-14-2007, 01:48 PM
I agree that we must move forward here. Structural and Celia, would it be possible for you two to just ignore each other on this forum? Of course we would all like it if you two could communicate without upset. But if that is not the case, possible just not directing any comments to each other.

Celia
04-14-2007, 01:51 PM
Melissa,

I can't see any of his posts! He's on my ignore list. :D *YAY*!!!!!!! Oh HAPPY HAPPY DAY!!!!!!!! :D :D :D FREE AT LAST! FREE AT LAST!!!! THANK GOD ALMIGHTY, I'M FREE AT LAST!!!!!!

****

structural75
04-14-2007, 03:26 PM
real mature... I can't believe I've been a part of this again... sorry folks:(

Celia
04-16-2007, 02:16 PM
Getting back to the topic at hand before I was so rudely interrupted by someone trying to rehash old vestibular testing/rehab wounds and unproven expensive "comprehensive treatments" ... what do these children deserve? Are their lives less worthy than Dr. Weinstein or the other doctors participating in this study? As I mentioned previously, I value *all* human life! All children deserve a fair chance!!!!!! It's one thing refusing to wear a brace and opting out of treatment because a child refuses to wear the brace.... it's quite another when these doctors start playing God and deny someone treatment. I think we have already made enormous strides in scoliosis research that we have a fairly good idea who will benefit from bracing and who won't and what will happen to children who are not braced during the adolescent growth spurt. When I refer to doctors playing God I'm referring to these doctors condemning half these children to a life long battle with a deformity and requiring surgery. If an individual wants to volunteer him/herself or a family member to be one of the participants in a control study or placebo group, go right ahead! Is this what we call scientific progress????? Honestly....how many more bracing studies are needed? Do we really need sacrificial lambs to complete these studies ??? Take a look at the annotated bibliography on this link:



http://www.srs.org/professionals/bracing_manuals/

structural75
04-16-2007, 03:11 PM
Getting back to the topic at hand before I was so rudely interrupted by someone trying to hash out old vestibular testing/rehab wounds and "comprehensive treatments"My case in point... you simply don't quit!

(Again, I don't do vest rehab or testing, but I do give credibility to neurologic factors in cases of scoliosis - as do many of the top specialists in the field.)

Onward... I sympathize with your sentiment about 'innocent' children, I really do. And I don't think it's appropriate to deny people proper treatment either. But do we know how the control group is being selected in this study? (I'm asking that question for real) I don't personally know... ?

I'm just thinking about all of those children/people who haven't been helped by bracing of any kind, including spinecor. What can be done for these folks outside of surgery? And how can we enhance the effectiveness of existing bracing methods and why are some failing to respond to it? I think more bracing studies, of some kind and without the victimization of children involved, could help shed some light on the matter. I think it's probably safe to say that bracing is hit or miss. Reliable predictability is still a real challenge... further inquiry is necessary.


it's quite another when these doctors start playing God and deny someone treatment. I think we have already made enormous strides in scoliosis research that we have a fairly good idea who will benefit from bracing and who won't and what will happen to children who are not braced during the adolescent growth spurt. When I refer to doctors playing God I'm referring to these doctors condemning half these children to a life long battle with a deformity and requiring surgery.I think we have made positive strides yet there are still children being prescribed braces and having little success with it if at all. This leads me to question why these children are being braced in the first place if we supposedly have a good idea who will benefit and who won't.

I don't know that bracing methods and studies have been exhausted. What if we took that stance before the introduction of spinecor? We would have sold ourselves short of a 'new' approach to bracing. So to think that the spinecor, and other hard braces, are the end of the evolution of bracing seems a bit god-like as well.


structural

gerbo
04-17-2007, 10:00 AM
personally I think that it is well established, from the available evidence, that more patients who are braced have a good outcome, than patients who are not braced.

One wonders whether the main issue with regards to those who do not respond are not patient issues (beyond the ones who have just gone too far) but issues to do with the quality and method of bracing. it is obvious that not everybody works to the same standard, protocol or technique and this might just account for the many failures.

Ofcourse if you do not pay much attention to your bracing (as you do not believe in it anyway) your results will be poor, which then becomes a self fullfilling prophecy, also resulting in all these very divided opinions.

I have referred before to the orthotist in germany, who uses a modified cheneau brace and apparantly often achieves 100% or more correction in the brace. His results, alledgedly, are very good. Unfortunately there is no proper study available to back this up, but on german forums they do rave about him (and are absolutely scathing (?) about anglo-american bracing)

so, in my mind, the study should be about why some bracing helps, and other doesn't, and really I believe there is a case for each major center collecting figures on their results, which than could be compared. (the same happens in the UK with regards to (amongst others) succesrates for heart surgery, survival rates after major surgery etc, etc, . The ones with the worst results might in that scenario have to face up to the fact they are not doing their job properly..... (surgeons have lost their jobs on the back of these type of comparisons)

Celia
04-17-2007, 10:18 AM
Remember also that when the Spinecor brace was introduced over 15 years ago, people were taking risks but it wasn't a matter of doing "nothing" at all. I believe that children who were in the intial study had the option of trying the brace and if there was progression they were offered a rigid brace. This is *exactly* what I would have done with my own daughter if there was progression! The BrAIST study is completely different and there is no way anyone can compare the BrAIST study to the Spinecor study.

I also find it ironic that the NSF made the following comment in it's recent issue of "Talk Back"

"One of the fundamental beliefs of the National Scoliosis Foundation is that every child regardless of race, creed or socio-economic status deserves an equal opportunity for the early detection of spinal deformities such as scoliosis and has access to the least invasive, less expensive, and most effective treatment options possible."


Yet a few of the members of the SOSORT who are presenting their findings in May are providing unproven expensive treatments to patients.



****

CurvySAT05
04-17-2007, 12:18 PM
I can't help the fact but to think that in this "study" they are still requiring all of the participants to have insurance coverage or willingness to pay for treatment. I think that they would get better results if they were to find participants who were underprivilaged and would not recieve treatment otherwise and were good bracing candidates. Or if they [the doctors and facilities involved in the study] just treated the study patients for free during the length of the study. Many "clinical trials" pay their participants for being involved in research. I personally think that if the people in the study are paying for the braces, and the treatment that they are less likely to be as compliant with the study because they are still paying for their treatment the same as "normal" patients. If the child gets frustrated with the brace, or has a "I hate my spine" moment, they will have nothing to fall back on such as, "give it a try, the doctors gave you your brace, they just want to see you succeed."
I remember something a good friend of mine said one day (who works with Juinor Highers) "they [the kids] leave the house with the brace on, the parents praise them, and then once down the street out of sight they take it off and hide it behind a bush until after school and walk back in the door with the brace on and their parents never know they had it off all day."
Who is going to measure their compliance during the study? Are all 250 children in the brace going to have the same standards in the brace 23/7 or 18/7 or are they going to be different for each center, or doctor? Will the change in standards change the results of the study?
I will be excited to read the results of the study when they come out.
I would not go so far as to say avoiding certain centers like the plague, but I do know where you are coming from. My first surgeon said I was done growing when I was diagnosed (I was 5'8" tall) so I was never braced, and like the "control group" I progressed to surgery (I was 14 y.o. at diagnosis). When I got a second opinion 2 years later, I had grown 2 inches and my curve had progressed 10* (which my first surgeon said had not progressed at all). I think that some surgeons are more likely than others to give braces, or to "wait and watch" and will not necessarily have 50% of their patients in each category.

Celia
04-18-2007, 11:57 AM
I'm sure many are familiar with the Hippocratic Oath which doctors recite upon graduation. Here is the modern version:

Hippocratic Oath

I swear to fulfill, to the best of my ability and judgment, this covenant:

I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.

I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.

I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.

I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.

I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.

I will prevent disease whenever I can, for prevention is preferable to cure.

I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.

If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.


*