PDA

View Full Version : Very Interesting Scoliosis Blog



concerned dad
05-14-2009, 02:11 PM
This morning whiule searching for information about the Charleston Brace in response to a question from the fellow on the bracing forum, I came across an interesting Blog.

I did a search and I see I am not the first to have brought it to folks attantion, Chris WBS mentioned it about a year and a half ago.

This surgeon keeps a very active Blog, (over 300 posts in the last 2 years). Obviously I havent read all of it but the first post I came across was interesting
natural history of adolescent scoliosis (http://drlloydhey.blogspot.com/2007/09/natural-history-of-adolescent-scoliosis.html) where he talks about some of the research on the topic.

His main blog page is http://drlloydhey.blogspot.com/
You might consider bookmarking it.
and if anyone reads something particularly interesting perhaps you can bring it to folks attention and we can discuss it on this thread.

Pooka1
05-14-2009, 03:46 PM
Hey CD,

Thanks for posting that. I forgot about that guy.

From the blog post you cite...

In this chapter they also report from Univ Iowa study that thoracic curves more than 30 degrees at maturity progressed an average of 19 degrees during the 40 yr f/u period, with the fastest progression being in the curves that were 50-75 degrees at time of maturity, which progressed 0.75 to 1 degree per year (40 degrees over 40 yrs).

Based on this, I think I misunderstood our surgeon... I thought I understood him to say only 5% of curves <50* at maturity will ever progress in a lifetime. I now suspect what he actually said/meant was that only 5% of curves <50* progress to surgical territory but most/all still can be expected to progress continuously though life.

That is a sticky wicket in my opinion. The people in that group progressed an AVERAGE of 19 degrees in 40 years. And it is likely the ones who progressed more than the average had larger curves. So my daughter is at 36* - 40* and will soon be in Stage 8 (mature). So she is likely to progress at least the average amount, 19 degrees in 40 years. That puts her at 56* - 60* at 70 years old. That's still a significant curve that likely will trigger surgery for pain and other spinal damage when she is older. I think this group is unfortunately in a very gray area.

Pooka1
05-14-2009, 04:36 PM
Hey Blog (http://drlloydhey.blogspot.com/)

I read the most recent posts. I think this guy must hold the record for fastest fusions!

Man.

CHRIS WBS
05-14-2009, 05:21 PM
I think this guy must hold the record for fastest fusions! Man.

That has piqued my curiosity as well. One of the surgeons I saw in Chicago who proposed a really big surgery for me is just the opposite. I think he holds the record for the slowest fusions. Iíve had conversations with women treated by this doctor who were in surgery anywhere from 17 to 30 hours. The 30-hour one was split in two 15-hour segments, but why so long? And when I was in rehab I met a woman who had surgery by this doctor in one 19-hour operation. I seriously question the safety of having a patient anesthetized for so long.

LindaRacine
05-14-2009, 06:47 PM
Hey Blog (http://drlloydhey.blogspot.com/)

I read the most recent posts. I think this guy must hold the record for fastest fusions!

Man.

I think that title belongs to Harry Shufflebarger. I don't know if he's still operating, but I remember him telling me that they were doing 3 stage surgeries (front/back/front) in < 8 hours.

--Linda

LindaRacine
05-14-2009, 06:49 PM
That has piqued my curiosity as well. One of the surgeons I saw in Chicago who proposed a really big surgery for me is just the opposite. I think he holds the record for the slowest fusions. Iíve had conversations with women treated by this doctor who were in surgery anywhere from 17 to 30 hours. The 30-hour one was split in two 15-hour segments, but why so long? And when I was in rehab I met a woman who had surgery by this doctor in one 19-hour operation. I seriously question the safety of having a patient anesthetized for so long.

Yikes! I'd have to agree with that. Having undergone 11-1/2 hours, I can't even imagine what the patient would feel like after twice that amount of time. Chris, PM me with the name if you don't mind.

--Linda

LindaRacine
05-14-2009, 06:51 PM
This morning whiule searching for information about the Charleston Brace in response to a question from the fellow on the bracing forum, I came across an interesting Blog.

I did a search and I see I am not the first to have brought it to folks attantion, Chris WBS mentioned it about a year and a half ago.

This surgeon keeps a very active Blog, (over 300 posts in the last 2 years). Obviously I havent read all of it but the first post I came across was interesting
natural history of adolescent scoliosis (http://drlloydhey.blogspot.com/2007/09/natural-history-of-adolescent-scoliosis.html) where he talks about some of the research on the topic.

His main blog page is http://drlloydhey.blogspot.com/
You might consider bookmarking it.
and if anyone reads something particularly interesting perhaps you can bring it to folks attention and we can discuss it on this thread.
That's a really good synopsis of the current thinking on bracing. I worry, however, because of some of the wording, that it's being used to coerce people into surgery. There's no way of knowing if that's the case, however, unless one could be there when Dr. Hey is presenting the info to the patient and his/her parents.

--Linda

Pooka1
05-14-2009, 07:28 PM
That's a really good synopsis of the current thinking on bracing. I worry, however, because of some of the wording, that it's being used to coerce people into surgery. There's no way of knowing if that's the case, however, unless one could be there when Dr. Hey is presenting the info to the patient and his/her parents.

Can I ask which passage you thought could be construed as coercing people into surgery?

I am very skeptical of this surgery coercion argument. The good surgeons have their dance card full at all times. They don't need to resort to coercion.

mariaf
05-14-2009, 07:54 PM
The good surgeons have their dance card full at all times.

That's true, Sharon. If you needed to book surgery with a well-regarded, top-notch surgeon, you could be looking at 6-12 months waiting time, maybe more. They do seem to have more than enough work - that's for sure.

LindaRacine
05-14-2009, 08:40 PM
Hi Sharon...

While all the statements are true, I thought this segment said to the reader, "if you're smart, you'll choose potential surgery over that awful bracing." In Dr. Hey's defense, I think it's difficult for most surgeons (who one would assume would rather operate than monitor a kid in a brace), to be completely neutral.

In addition, it is important for the child and family to realize the following:

1. In order for the brace to be effective, it must usually be worn from 16-23 hours per day.
2. Compliance can often be an issue, and can create tension between child and parents.
3. The brace must be worn until skeletal growth is completed, which could be 2-6 or so years in most cases.
4. There may be some psychological / self-image issues around brace wear that could effect the childís development.
5. There is no guarantee that the brace will work. Scoliosis surgery may still be necessary as an older adolescent, young adult or older adult. Some adolescents feel ďcheatedĒ if they choose the bracing option, and then end up needing surgery anyway. I have had college students weeping wildly in my office, who were treated for years in a brace through middle school and high school who then found out that they needed scoliosis surgery anyway.
6. The braces can be very expensive (often over $2,000 - $5,000) from most orthotists, although usually covered at least in part by insurance.
7. Bracing usually multiple trips to orthotist for adjustments, and possibly new braces required as the child grows.
8. Additional X-Rays needed in the brace to judge the effectiveness of the brace on curve correction.
9. Bracing does not improve the appearance of the deformity, or the end curve measurement ó the hope is to hold the curve at or near the current measurement. Self-image issues have been shown to be a major factor in the long-term effect of scoliosis on the individual.
10. Scoliosis surgery has changed a lot during the past 40 years, with excellent improvements in postural appearance, much shorter surgical times, hospitalizations, and recovery times, and lower complication rates.
11. Bracing may be helpful to at least delay surgery until a child is bigger, and has had more axial growth, making surgery less risky. However, this has to be weighed against the potential for severe curve progression despite brace.
12. Other factors may affect the child/adolescentís ability to be successfully braced, including body habitus and curve flexibility and location.

--Linda

Dingo
05-14-2009, 10:19 PM
This sentence really caught my eye


Males are at 1/10 of risk progression than females.

Is that really true? Only one tenth the risk? If so WOW!

LindaRacine
05-14-2009, 10:22 PM
This sentence really caught my eye



Is that really true? Only one tenth the risk? If so WOW!

Yes, although I think it is only for AIS.

leahdragonfly
05-14-2009, 10:26 PM
Dingo,

I believe that figure you quote for male: female risk ratio of 1:10 is for AIS. The studies I have read for JIS put the figure at about 50/50 male/female, with more males in the 3-6 y/o age group and more females in the 7-9 y/o age group. The thinking behind this is that the younger JIS cases may contain some hold-overs from infantile idiopathic scoliosis (previously undetected cases). At least that is what I've read.

By the way, how is your son?

Pooka1
05-15-2009, 05:40 AM
I think it's difficult for most surgeons (who one would assume would rather operate than monitor a kid in a brace), to be completely neutral.

Why do you think most surgeons would rather operate than brace (or watch and wait)? I can't imagine that could possibly be true.

They want to operate on cases that require it. They would be insane (and subject to malpractice claims) to want to operate and cases that don't require it.

Singer
05-15-2009, 06:35 AM
It may be totally irrational, but I just have a funny feeling about surgeons who self-promote. Dr. Hey's blog is perhaps more informational than promotional (he obviously loves/lives and breathes his work), but it still smacks faintly of "hard sell" to me.

That being said, I'd probably seriously consider going to the guy if I needed revision surgery and Dr. B had retired. He appears to get very good results.

Pooka1
05-15-2009, 06:44 AM
It may be totally irrational, but I just have a funny feeling about surgeons who self-promote. Dr. Hey's blog is perhaps more informational than promotional (he obviously loves/lives and breathes his work), but it still smacks faintly of "hard sell" to me.

That being said, I'd probably seriously consider going to the guy if I needed revision surgery and Dr. B had retired. He appears to get very good results.

I know what you mean. I had other concerns as well though I think the guy is very good. We could have gotten an opinion from him but I didn't need it at that point.

Our non-SRS surgeon doesn't maintain a blog and yet he has SRS surgeons referring patients, including their own daughters, to him. There is a reason for that. Those types of surgeons don't need to advertise... their dance card is always full, if only from SRS surgeons. Our surgeon told me as much when I mentioned I remark often about his work with my daughter on web sites. He basically said he really didn't need more patients.... full up. There are only 24 hours in the day.

Things like this steal the ground completely out from under the woo-woo pushers who have no factual argument in favor of their "treatment" so they imagine one where surgeons are operating on sub-surgical cases just for the money. Absurd and insulting. And ignorant.

MissEmmyF
05-15-2009, 08:42 AM
Things like this steal the ground completely out from under the woo-woo pushers who have no factual argument in favor of their "treatment" so they imagine one where surgeons are operating on sub-surgical cases just for the money. Absurd and insulting. And ignorant.

wow, that's quite the generalization.

concerned dad
05-15-2009, 08:52 AM
I'd have to agree, it is an unfair generalization.

I believe there is a bias toward surgery for surgeons. It makes sense.
Are they performing unnecessary surgeries (pulling the trigger early), I dont think so.

But, I wonder how many of them view bracing (pro of con) with the angle of,"well, if I am wrong, I know I can do a good surgery and fix the problem".

But there has to be a bias. My dad used to say that "if the only tool you have is a hammer a lot of your problems start looking like nails".

Dingo
05-15-2009, 10:34 AM
leahdragonfly

I knew that young kids were about 50/50 boys and girls and teen cases ran something like 10 to 1 girls. But is this guy saying that progression risk is 10 to 1 girls or just case load?

My son goes in for his first recheck on Monday. It's my opinion that in the last 8 months his curve has rotated but I hope I'm wrong. Uggh... I'm not looking forward to night bracing. We started strength training/stretching/balance exercises a week ago and I have some reason to believe this may help.


The thinking behind this is that the younger JIS cases may contain some hold-overs from infantile idiopathic scoliosis (previously undetected cases).

That's interesting you say that. I was just talking to a surgeon and I'm beginning to suspect this may be true for my son. Scott was officially diagnosed at age 5 but his pediatrician noticed a small rib hump at age 4. That means that his curve got started at least in his 3s if not sooner. We have some reason to believe it may have been present since birth. He was born extremely stiff on one side which took months to correct. Although he's neurologically healthy and very athletic he has always run in a visibly "stiff" manner. We never connected that with his Scoliosis until I talked with the surgeon yesterday. This man has never met my son and when he mentioned that stiffness in the ligaments of the spine is the physical precursor to Scoliosis my jaw dropped. My son is the definition of stiffness.

concerned dad
05-15-2009, 10:42 AM
Dingo, You mention "Balance".
That reminded me of my one experience with a Wii Fit.

I wonder how kids with scoliosis do with the balance measurements on the Wii Fit Balance board. If you've ever checked it out you will know what I am talking about. If not, you'll think me crazy.

Pooka1
05-15-2009, 11:11 AM
wow, that's quite the generalization.

Why do you think so?

Pooka1
05-15-2009, 11:12 AM
But there has to be a bias. My dad used to say that "if the only tool you have is a hammer a lot of your problems start looking like nails".

Surgeons are the ONLY people with ALL THREE tools.

Nobody else can say that.

The woo-woos have one or two but never three (if you don't count chanting and such).

LindaRacine
05-15-2009, 11:17 AM
Why do you think most surgeons would rather operate than brace (or watch and wait)? I can't imagine that could possibly be true.

They want to operate on cases that require it. They would be insane (and subject to malpractice claims) to want to operate and cases that don't require it.

I absolutely agree. What I meant is that in terms of things they like to do, surgery would fall much higher than watching a kid in a brace.

Pooka1
05-15-2009, 11:26 AM
I absolutely agree. What I meant is that in terms of things they like to do, surgery would fall much higher than watching a kid in a brace.

I don't think that is true for most surgeons.

I don't think they like seeing kids go through surgery and recovery.

They are human.

concerned dad
05-15-2009, 11:38 AM
I don't think that is true for most surgeons.

I don't think they like seeing kids go through surgery and recovery.

They are human.

No way. I've watched enough stuff on TV to know this is wrong. :D Ever see the doctors on Greys Anatomy get excited when they get to do a surgery.
They are not happy someone needs surgery. But they are happy they can do it (and help the person) when needed.

And, if it is on TV, it HAS to be true.

They do have all 3 tools. But do they ever introduce themselves at a party saying "I'm Dr. Smith the bracer" or I'm Dr. Smith the Watcher".
They say, "I'm Dr. Smith, the Surgeon".

Again, they dont "like" that someone needs surgery. But I bet they love the fact that they can do it efficiently, safely, and change someones life for the better.

Now, as a "community" do they lobby pro-surgery. I bet they do.
What is their comunity view on political issues like school screening?

LindaRacine
05-15-2009, 11:41 AM
Hi Sharon....

I know a lot of surgeons. There's a reason they go into the field.

I'm not saying that they like doing unnecessary surgery. I'm saying that they'd rather spend their time in the OR than in the clinic. Like, they'd rather eat cinnamon rolls than spinach. They wouldn't choose to eat cinnamon rolls all the time, as they know the outcome wouldn't be great.

--Linda

PNUTTRO
05-15-2009, 11:49 AM
I wonder how kids with scoliosis do with the balance measurements on the Wii Fit Balance board. If you've ever checked it out you will know what I am talking about. If not, you'll think me crazy.

I used the Wii Fit before and after my most recent surgery. I found that I wasn't really that unbalanced. I was compensating by shifting my hips and leaning forward a little. After surgery, I noticed the difference.

I imagine a compensatory curve might accomplish the same thing.

Ballet Mom
05-15-2009, 11:56 AM
Hi everybody. I have to say that I find Dr. Hey a reasonable sounding surgeon, however, I have to admit that when I'm reading his current blog I feel like I'm in a used car lot. :rolleyes: I personally would probably choose the "mad scientist" over him. :p

To not realize that people work for their own benefit is rather naive. It has helped me to protect myself a lot in life when I consider people's motivations behind their actions. Dr. Hey has a large clinic and facility, it looks like, and a payroll to meet. To think that he won't try to get the bodies through the door to pay his expenses is just not realistic. If he's prescribing braces for his patients according to medical standard guidelines, he's working in an ethical manner, if he's not prescribing braces I would have to conclude that he is able to get more profitable surgical business for himself that way and I would run like heck from him. I don't know anything about him, so I can't say one way or the other.

I have to admit when my daughter went back for her x-rays after wearing her brace for two months and both curves had temporarily reduced quite a bit in response to the Charleston brace, I did see a fleeting glimpse of disappointment cross the surgeon's face...heh. To deny self-interest is to deny human nature. Just realize it is what it is and act accordingly to protect yourself and your loved ones.

Pooka1
05-15-2009, 12:01 PM
Hi Sharon....

I know a lot of surgeons. There's a reason they go into the field.

I'm not saying that they like doing unnecessary surgery. I'm saying that they'd rather spend their time in the OR than in the clinic. Like, they'd rather eat cinnamon rolls than spinach. They wouldn't choose to eat cinnamon rolls all the time, as they know the outcome wouldn't be great.

--Linda

Yes but that doesn't mean they operate on sub-surgical cases or do anything to convert sub-surgical cases to surgical ones. Actually it is not possible for a surgeon to convert a sub-surgical case to a surgical case though that fact escapes many.

If they did then that would be malpractice which I suggest is not happening in the bulk of surgeons and is certainly not happening with the ones who have enough patients and then some.

I think some here would have a different view of surgeons if they ever got an opinion from one of these top guys.

Ballet Mom
05-15-2009, 12:09 PM
I don't really agree with that Sharon. My daughter comes up on all the studies shown recently on this forum as showing that she had a 100% chance of progressing and 100% chance of surgery. And through my observations, I would absolutely agree that without the brace she absolutely would have progressed to surgery. But by utilizing the Charleston brace, the doctor now thinks she won't progress anymore. So she was able, I think quite obviously, that she avoided surgery by using the brace. If a doctor hadn't prescribed one to her, she would have been in surgery. And the head of orthopedics of another major facility saw the exact same result with the cheerleader with the same Cobb Angle and age. So, it's not a miracle.

I actually think that your doctor is not following standard medical procedure by not prescribing braces, although I would make sure that was true, maybe he was just following your lead and he actually does brace other kids. If he's not prescribing bracing when it is the medical standard, I would think the state's medical oversight board might want to investigate further.

LindaRacine
05-15-2009, 12:10 PM
Yes but that doesn't mean they operate on sub-surgical cases or do anything to convert sub-surgical cases to surgical ones. Actually it is not possible fora surgeon to convert a sub-surgical case to a sub-surgical case that that fact escapes many.

I don't think that any of my statements would imply that. We're talking about a session in which a surgeon is counseling a family about bracing. How did we get from there to sub-surgical curves?

--Linda

Pooka1
05-15-2009, 12:20 PM
I actually think that your doctor is not following standard medical procedure by not prescribing braces, although I would make sure that was true, maybe he was just following your lead and he actually does brace other kids. If he's not prescribing bracing when it is the medical standard, I would think the state's medical oversight board might want to investigate further.

If he was just following my lead then my kid wouldn't have a brace now, yes?

When he prescribed the brace he said he didn't or rarely braced prior to seeing some recent data on the Charleston.

I didn't know then what I know now. If I knew then what I know now I would have asked many more questions about the brace and might very well have refused it unless my kid wanted to try it (which she did). So I would have gotten it because she wanted to try it irrespective of what I know about the bracing literature.

Can you point me to the medical standard for bracing? I mean that shows it is malpractice not to prescribe it in certain cases. Thanks.

ETA: Also, how is the BRAIST study being conducted if it is the medical standard to brace? I would think that would never get past the ethicists if there is some medical standard to brace. Can you explain that?

Pooka1
05-15-2009, 12:23 PM
I don't think that any of my statements would imply that. We're talking about a session in which a surgeon is counseling a family about bracing. How did we get from there to sub-surgical curves?

--Linda

BTW, I fixed the typos in my quote after you quoted me. :)

Perhaps I've lost track of the conversation.

I don't understand how a surgeon's personal preference for surgery could ever translate into whether or not he prescribes bracing. The two things are unconnected.

Ballet Mom
05-15-2009, 12:50 PM
"Can you point me to the medical standard for bracing? I mean that shows it is malpractice not to prescribe it in certain cases. Thanks."

Sorry, I don't "do" legal advice. But I suspect that since you wouldn't have braced in any case, that you and your daughter haven't suffered any damages by his lack of prescribing a brace to your older daughter. Maybe other patients have. You will have to seek your own professional advice if you want to follow that avenue.

LindaRacine
05-15-2009, 01:15 PM
BTW, I fixed the typos in my quote after you quoted me. :)

Perhaps I've lost track of the conversation.

I don't understand how a surgeon's personal preference for surgery could ever translate into whether or not he prescribes bracing. The two things are unconnected.

I'm not implying this, but theoretically, if a surgeon subtly (or even unintentionally), makes a brace sound like it's not a great option, that would translate to more surgical patients.

This debate is much ado about nothing. I'm not implying that Dr. Hey is steering patients away from bracing. I just thought his wording might subtly favor the non-brace choice.

--Linda

concerned dad
05-15-2009, 01:22 PM
I actually think that your doctor is not following standard medical procedure by not prescribing braces, although I would make sure that was true, maybe he was just following your lead and he actually does brace other kids. If he's not prescribing bracing when it is the medical standard, I would think the state's medical oversight board might want to investigate further.

Ballet Mom, this statement makes no sense in light of the Braist Study.

If it were standard medical procedure, ethical concerns, outlined in the Declaration of Helsinki, would have prevented the trial from going forward.

If what you say is true, then all these hospitals and universities (http://www.goosetowngraphics.com/braist/index.htm)are not following standard medical procedure and should be reported to the medical oversight board.

Ballet Mom
05-15-2009, 01:58 PM
Shoot, I just thought I posted a reply and don't see it anywhere. Is there any possibility it got lost in the system. I don't want to have to come up with it all over again....darn :(

concerned dad
05-15-2009, 02:01 PM
if you dont close your browser you can hit the BACK button multiple times.

then, to be safe, highlight it all and press control c (to copy to your clipboard), then you can paste it if you keep losing it.

LindaRacine
05-15-2009, 02:08 PM
Shoot, I just thought I posted a reply and don't see it anywhere. Is there any possibility it got lost in the system. I don't want to have to come up with it all over again....darn :(
That happens to me occasionally. I'm not sure how.

--Linda

Ballet Mom
05-15-2009, 02:32 PM
Darn it all. Let me see if I can resurrect my thoughts.

I think when I read the Braist study, they were quite clear that they would only use those families who had no preference one way or the other in bracing. I personally am not a candidate for this study because I would no way risk that for my daughter. Personally, I don't consider this study ethical, and it's probably why they don't have these studies already, but that's just my opinion.

However, I do note that there seem to be several people just on this board alone who don't wish to brace, perhaps they are candidates if they are actually willing to brace for "science or research's sake. Who knows? Or maybe there are people without insurance, unfortunately in this country it seems to be a lot of people these days, who wouldn't receive any scoliosis care and at least in this study they might have a chance to receive a brace, or at least receive surgery at the end of the study if they didn't get the brace. Of course, it could just be ignorance about scoliosis treatment on the part of the patient's family also, hopefully the study design requires them to inform the patients about the risks of not bracing based on current data. I sat next to one woman with scoliosis in a waiting room who wasn't bracing her daughter due to her experience with bracing - perhaps she would be a candidate. I guess it could be ethical if the study induced people who wouldn't have braced at all, to actually convince them to brace if they drew that lot.

I recall someone posting that very few people are actually volunteering for this. This agrees with my feeling that most parents are going to do everything in their power to try to stop the progression.

Will this study, even if done, actually mean anything for the general population when it's done? If you take mainly people who have probably given their scoliosis to their children genetically, is that representative of the general population? Probably not. Perhaps not even because of the designs of these studies....In the study from Dr. Weinstein's book on the Hey blog:

"they also report from Univ Iowa study that thoracic curves more than 30 degrees at maturity progressed an average of 19 degrees during the 40 yr f/u period, with the fastest progression being in the curves that were 50-75 degrees at time of maturity, which progressed 0.75 to 1 degree per year (40 degrees over 40 yrs)."

How does an average of Cobb angles from 30 degrees to 75 degrees mean anything to anybody? Maybe I'm missing something. But it seems to me that the 30 degree curve is going to act a lot differently than the 75 degree curve. Why didn't Weinstein break it up into smaller ranges, say five or ten degree increments so it was more meaningful? Did he not have enough participants in the study to make it meaningful? If so, how does it make it meaningful to the rest of the population?

I'm really out of my turf here, but that's just what caught my attention when you asked me that question. As I say, I am just an amateur, so take my view for what it's worth.

Pooka1
05-15-2009, 02:43 PM
"Can you point me to the medical standard for bracing? I mean that shows it is malpractice not to prescribe it in certain cases. Thanks."

Sorry, I don't "do" legal advice. But I suspect that since you wouldn't have braced in any case, that you and your daughter haven't suffered any damages by his lack of prescribing a brace to your older daughter. Maybe other patients have. You will have to seek your own professional advice if you want to follow that avenue.

You grossly misunderstand my point.

I am not asking for legal advice from you.

I am questioning your claim that bracing is the medical standard.

Clearly it is not as can be seen in the BRAIST protocol so I want to see your evidence that it is.

I know from the literature that surgeons who don't brace are on very firm ground. That's why I asked for your evidence challenging that.

The surgeons who brace for the parents despite the literature, if they exist, are the ones on shaky ground.

Pooka1
05-15-2009, 02:46 PM
I'm not implying this, but theoretically, if a surgeon subtly (or even unintentionally), makes a brace sound like it's not a great option, that would translate to more surgical patients.

How do you know this? For this to be true you would need proof that bracing translates to less surgical candidates than does watching and waiting. I am unaware of proof for this statement. It implies bracing is known to work and that is not the case.

Did I misunderstand you again?

Pooka1
05-15-2009, 02:50 PM
Ballet Mom, this statement makes no sense in light of the Braist Study.

If it were standard medical procedure, ethical concerns, outlined in the Declaration of Helsinki, would have prevented the trial from going forward.

If what you say is true, then all these hospitals and universities (http://www.goosetowngraphics.com/braist/index.htm)are not following standard medical procedure and should be reported to the medical oversight board.

Yes.

I have posted articles that show the present set of studies are not dispositive. That opens the door for the BRAIST study and others like that.

It also necessarily follows that bracing is NOT a medical standard. Dr. Hey basically said as much in how his thinking has migrated away from rote formulae on bracing to admitting there is no proof it works.

Some view this as subtly pushing surgery. I see it as an act of intellectual honesty and admitting his automatic bracing was wrong or at least not supported by evidence. He's brave.

concerned dad
05-15-2009, 02:53 PM
Interesting post, I'll have more comments later but I just wanted to say two things:
1. That must have hurt when you hit the reply key and saw it evaporate (I get the logon screen).

2. I think I am the only one here actively not bracing a child with a curve within bracing range. Could be wrong on that but feeling kind of lonely since I just came to that realization. But it doesnt have anything to do with money or insurance. (And participants in the Braist study must provide both - there is no free bracing or surgery for participants).

I have to formulate some thoughts on the rest of your post.

Pooka1
05-15-2009, 02:55 PM
I recall someone posting that very few people are actually volunteering for this. This agrees with my feeling that most parents are going to do everything in their power to try to stop the progression.

That's right and really not surprising. Some parents will brace despite the literature and some will not brace because they don't think there is enough evidence to date that bracing likely works for most kids. It may work for some. I have my doubts they will get enough kids enrolled in the study.


As I say, I am just an amateur, so take my view for what it's worth.

I hope people realize we are ALL amateurs on this site. A researcher posted a few times on the UK forum. But that's it as far as I can tell for both fora.

Pooka1
05-15-2009, 03:03 PM
2. I think I am the only one here actively not bracing a child with a curve within bracing range. Could be wrong on that but feeling kind of lonely since I just came to that realization. But it doesnt have anything to do with money or insurance. (And participants in the Braist study must provide both - there is no free bracing or surgery for participants).

Hey CD! I'd be right there with you if my daughter didn't want to try it. I told her she can stop wearing it any time she likes. For example, she has stopped bringing it on trips. She stopped bringing it on trips AFTER her curve went from being stable before the brace to increasing 8* in six months IN the brace. I think she realized the brace wasn't holding the curve. But she still wears it most nights as far as I know. At this point, she might be doing it because she has a hard time sleeping without it which concerns me slightly muscle atrophy wise.

I'm always with you, CD. You have my undying respect and appreciation for your significant contributions to this forum and for being an example to me of true open-mindedness. That is not so common and is to your great credit.

concerned dad
05-15-2009, 03:24 PM
I hope people realize we are ALL amateurs on this site. A researcher posted a few times on the UK forum. But that's it as far as I can tell for both fora.

Let me get out my crystal ball and predict that sooner or later we WILL get an orthopedic doctors input on this site. And I'll bet dollars to donuts that when we hear from him he will not be singing the praises of bracing.

(OK, I'm cheating on this prediction but couldnt resist. Stay tuned.)

Pooka1
05-15-2009, 03:40 PM
Let me get out my crystal ball and predict that sooner or later we WILL get an orthopedic doctors input on this site. And I'll bet dollars to donuts that when we hear from him he will not be singing the praises of bracing.

(OK, I'm cheating on this prediction but couldnt resist. Stay tuned.)

Wow!

I don't care what opinion they have. It would be beyond fantastic to read posts from an orthopedic surgeon.

ETA: I suspect there will be some "edifications" on what surgeons likely have told patients versus what people report they were told. It's hard to get what they mean sometimes. The recent example I had was my misunderstanding about progression potential if at a sub-surgical angle at maturity.

Ballet Mom
05-15-2009, 03:53 PM
Yes CD, losing that post was extremely painful! :eek:

An orthopedic surgeon visiting the site? This forum just gets more and more interesting! I can hardly wait. Getting out the popcorn maker...hee hee!

concerned dad
05-15-2009, 04:04 PM
Well, I didnt predict one would be posting. I just predicted that sooner or later we would "hear" from one. You cant keep discussions like we're having under wraps.

But, if one should post, we all have to be extra careful and treat him/her with the same respect Lori Dolan was treated with on the other forum. (And her views were/are in stark contrast to the predominant views there - boy, they keep things civil in Europe).

Ballet Mom
05-15-2009, 04:12 PM
Respectful,of course! :)

concerned dad
05-15-2009, 05:03 PM
Below I am talking about my views on AIS, not juvenile or infantile scoliosis.


Darn it all. Let me see if I can resurrect my thoughts.

Been there, done that. Very frustrating, especially on long posts where youíve given a lot of thought to what you want to say.


I think when I read the Braist study, they were quite clear that they would only use those families who had no preference one way or the other in bracing. I personally am not a candidate for this study because I would no way risk that for my daughter. Personally, I don't consider this study ethical, and it's probably why they don't have these studies already, but that's just my opinion.

If you have a strong opinion one way or the other youíre probably not a candidate.
Believe me, I explored the ethics of this to death. Originally I shared your viewpoint 100%. As I read more and more of the literature I changed my mind.
The thing is, you are right, it wasnít ethical. It wasnít ethical until the research came out showing the lack of evidence for bracing efficacy. Have you read any of the papers about this?


However, I do note that there seem to be several people just on this board alone who don't wish to brace,

I guess itís just me not bracing. But Sharon has looked at the literature and agrees with me. Many of the folks who were braced as children and went on to have surgery agree with me. While it is a personal opinion, I didnít just flip a coin. It was a very carefully measured decision.

You see, my fear is unnecessarily bracing. From the Danielson Paper (talking about the Nachemson 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 ďsavingĒ only 10% of the patients from surgery, the percentage in the group of observed patients?

70% of kids are unnecessarily braced. Doesnt this make you pause and think? Read again a comment from Dr Heyís blog:

Some adolescents feel ďcheatedĒ if they choose the bracing option, and then end up needing surgery anyway. I have had college students weeping wildly in my office, who were treated for years in a brace through middle school and high school who then found out that they needed scoliosis surgery anyway.

I think the onus is on us, the parents, to try our best to understand the issues. I found out who said the line I (miss)quoted in another post. MAMANDCRM said
ďThe way I look at it, my daughter's job right now is to wear this brace and mine is to figure out a way to get her out of it. ď

Her comment stuck in my head.


Of course, it could just be ignorance about scoliosis treatment on the part of the patient's family also, hopefully the study design requires them to inform the patients about the risks of not bracing based on current data.

Donít take this the wrong way but, there is ignorance both ways. There is a lot of blind faith in bracing. Every parent should ask themselves ďwhat am I trying to do?Ē and understand, the best they can, the evidence pointing to the chances of realizing that outcome.


I recall someone posting that very few people are actually volunteering for this. This agrees with my feeling that most parents are going to do everything in their power to try to stop the progression.

Yes, but just because you want to do everything to stop something from happening doesnít mean it is possible. The desire for a cure will not make it happen. What does happen is kids get braced unnecessarily, that we know. Some kids who are braced will go on to have surgery, we know that too.



Will this study, even if done, actually mean anything for the general population when it's done? If you take mainly people who have probably given their scoliosis to their children genetically, is that representative of the general population?

I think the design of the study is pretty darn good considering all the obstacles they face. By making it random, it is representative of the general population (of kids with scoliosis).



"they also report from Univ Iowa study that thoracic curves more than 30 degrees at maturity progressed an average of 19 degrees during the 40 yr f/u period, with the fastest progression being in the curves that were 50-75 degrees at time of maturity, which progressed 0.75 to 1 degree per year (40 degrees over 40 yrs)."

How does an average of Cobb angles from 30 degrees to 75 degrees mean anything to anybody? Maybe I'm missing something. But it seems to me that the 30 degree curve is going to act a lot differently than the 75 degree curve. Why didn't Weinstein break it up into smaller ranges, say five or ten degree increments so it was more meaningful? Did he not have enough participants in the study to make it meaningful? If so, how does it make it meaningful to the rest of the population?

Did you read the next paragraph in his blog, he agrees with you and uses the information to make an important point.

This huge variation in expected progression is one of the reasons why it is difficult to interpret many of the bracing studies, in terms of their effectiveness of treatment, since many of these studies included a large percentage of adolescents who were in this low risk of progression group.

I am not against bracing. It is just that in our particular circumstance, it didnt make sense. I hope I'll be able to live with myself if I am wrong. Like all the parents here, I love my daughter with all my heart and want to do what is best for her. But, I'm not going to brace her so I feel better about doing something, anything, to stop her curve from progressing.

mamandcrm
05-15-2009, 06:47 PM
Hi CD, you clearly believe you are making the best decision you can for your daughter. And, yes, the best decision does not always turn out to be the correct one. If there is a 75% chance that answer A is correct, then that's the best choice. That doesn't mean that the answer won't turn out to be B. We just do the best we can and one person's best answer is not necessariy the same as someone else's (or in line with the studies or formulas projecting outcomes). Your decision makes a lot of sense to me. Your daughter is 14 and seems pretty stable. Relatively speaking, she is near the end of this. Some times you have to roll the dice.

Pooka1
05-15-2009, 07:19 PM
Hi CD, you clearly believe you are making the best decision you can for your daughter. And, yes, the best decision does not always turn out to be the correct one. If there is a 75% chance that answer A is correct, then that's the best choice. That doesn't mean that the answer won't turn out to be B. We just do the best we can and one person's best answer is not necessariy the same as someone else's (or in line with the studies or formulas projecting outcomes). Your decision makes a lot of sense to me. Your daughter is 14 and seems pretty stable. Relatively speaking, she is near the end of this. Some times you have to roll the dice.

JIS is a whole different ballgame in my opinion. Higher stakes.

And scoliosis related to connective-tissue disorders is yet another. I think the presence of these kids in studies ostensibly looking at "AIS" lowers the apparent bracing effectiveness as there is some evidence certain of these cases are held by no brace.

Ballet Mom
05-15-2009, 10:04 PM
CD:


ď70% of kids are unnecessarily braced. Doesnt this make you pause and think?Ē

I would have to look at the study, I donít have time to, but Iím not sure I feel very confident thatís a true statement with the amount of conflicting opinions in this field.

Nobody is forcing anybody to choose the bracing option. This is America. I feel for the kids who wear the brace and still have to have surgery too, but I was also prepared to face it with my daughter and wouldnít have regretted the decision. But why do they think itís okay to sacrifice my child and the others who do respond? Why are they trying to remove my option to help my child? Youíre being allowed a choice to not brace, they would be removing my choice. Why would they consider subjecting my child and others to all the risks unnecessarily during surgery and in the future?

It makes me think that the financial analysts at the insurance companies are trying to remove the expense of bracing for their firms. And isnít it convenient that what apparently will benefit the insurance companies also benefits the surgeons? And obviously it will, because if you donít brace, the curves WILL become bigger, I think it was you who showed that with the study in Ireland. And therefore, with bigger curves at maturity, the greater the potential for progression in adulthood let alone in adolescence. And why would they subject these kids who never make it to a surgical level endure a greater physical deformity than they would have had to? And what are they going to do to the kids who are just wearing a brace to try and stall the time of surgery so more growth takes place? Just let them crankshaft? No big deal? Tell them, sorry, but youíre just going to have to deal with it because thatís what your DNA is going to do anyway?

So weíll sacrifice the fewer for the many in scoliosis? Why is the eighty plus year old dad of a co-worker getting new heart operations every couple of months when his wife is scared sheís somehow going to have to take care of this now senile old man with a brand new heart for the next twenty years? Why are they not sacrificing in those areas, if necessary, instead of sacrificing the well-being of children who have the rest of their lives to live?


ďDonít take this the wrong way but, there is ignorance both ways.Ē

I donít think what I am saying is based on ignorance. I think what I am saying is based on reason.


ďYes, but just because you want to do everything to stop something from happening doesnít mean it is possible. The desire for a cure will not make it happen. What does happen is kids get braced unnecessarily, that we know. Some kids who are braced will go on to have surgery, we know that too.Ē

Obviously


I think the design of the study is pretty darn good considering all the obstacles they face. By making it random, it is representative of the general population (of kids with scoliosis).

Are they sure the people signing up really are random? Iím not so sure about that. Seems like the moms who have apparently passed on their scoliosis to their kids would be more likely to sign up for the study if they didnít like bracing in their youth. What does that do to the validity of the study? As Sharon points out, are they trying to weed out those who might have conditions that might not be representative of the larger scoliosis population for bracing results?


ďDid you read the next paragraph in his blog, he agrees with you and uses the information to make an important point.

This huge variation in expected progression is one of the reasons why it is difficult to interpret many of the bracing studies, in terms of their effectiveness of treatment, since many of these studies included a large percentage of adolescents who were in this low risk of progression group.Ē

This is Dr. Hey responding, not Dr. Weinstein. Iím simply wondering why Dr. Weinstein didnít make the rates more clear. Or is it Dr. Hey who just picked the rates to report what he wanted to? (Sorry, I donít have the book in front of me to look). So it looks like the 30 degree curves will progress faster in adulthood than what the real value is? So people like Sharon can worry about her daughter progressing when the real value may be much lower? I simply donít understand why Weinstein (or perhaps Hey) did that. Funny how the highest rate was separated out, but the lowest rates werenít and in that case the higher average was used.


I am not against bracing. It is just that in our particular circumstance, it didnt make sense. I hope I'll be able to live with myself if I am wrong. Like all the parents here, I love my daughter with all my heart and want to do what is best for her. But, I'm not going to brace her so I feel better about doing something, anything, to stop her curve from progressing.

I completely understand and donít begrudge you your decisions at all. I have made the hardest decisions in my life during this last year trying to do the right thing for my daughter with completely conflicting information. I know we all are or we wouldnít be spending so much time on this forum. I really am hoping for the best for all our daughters and sons. I simply believe there is more to this drive to get rid of bracing than meets the eye. I am for options for ALL of us so we can make our own informed, somewhat intelligent decisions to the best of our limited ability.

LindaRacine
05-16-2009, 01:06 AM
Let me get out my crystal ball and predict that sooner or later we WILL get an orthopedic doctors input on this site. And I'll bet dollars to donuts that when we hear from him he will not be singing the praises of bracing.

(OK, I'm cheating on this prediction but couldnt resist. Stay tuned.)

CD.... Most scoliosis specialists don't have the time to spend monitoring posts here. I'm afraid that anyone who would have the necessary time might not be the sharpest knife in the drawer.

--Linda

LindaRacine
05-16-2009, 01:40 AM
How do you know this? For this to be true you would need proof that bracing translates to less surgical candidates than does watching and waiting. I am unaware of proof for this statement. It implies bracing is known to work and that is not the case.

Did I misunderstand you again?

Sharon...

You've been in quite a mood today.

The surgeons that we've been discussing are the very same ones who have authored the plenitude of studies that in their minds, prove that bracing works. It doesn't matter what you or I believe, in terms of this debate, as we have been discussing what is on their minds.

--Linda

Pooka1
05-16-2009, 06:39 AM
Sharon...

You've been in quite a mood today.

The surgeons that we've been discussing are the very same ones who have authored the plenitude of studies that in their minds, prove that bracing works. It doesn't matter what you or I believe, in terms of this debate, as we have been discussing what is on their minds.

--Linda

I think the number of surgeons NOW who think there is proof bracing works (versus hope it works) is smaller than you might think. The articles pointing out the problems with the previous bracing studies postdate the ones that (without proof) claim bracing works.

As to the literal handful of surgeons (3? 4?) who invent braces, they are a special category and are likely not representative of the great run of surgeons.

mamandcrm
05-16-2009, 07:17 AM
JIS is a whole different ballgame in my opinion. Higher stakes.

And scoliosis related to connective-tissue disorders is yet another. I think the presence of these kids in studies ostensibly looking at "AIS" lowers the apparent bracing effectiveness as there is some evidence certain of these cases are held by no brace.

I think the stress and uncertainty that goes with making decisions for our kids is universal. So JIS, AIS, whatever, my statement wasn't about science, just support:)

Pooka1
05-16-2009, 07:52 AM
But why do they think it’s okay to sacrifice my child and the others who do respond? Why are they trying to remove my option to help my child? You’re being allowed a choice to not brace, they would be removing my choice. Why would they consider subjecting my child and others to all the risks unnecessarily during surgery and in the future?

I don't think anyone is doing any of this.


It makes me think that the financial analysts at the insurance companies are trying to remove the expense of bracing for their firms.

Remove the expense of bracing??? Bracing costs a FRACTION of what surgery costs. If anything, the insurance companies would be pushing bracing with every fiber in their being on the merest HOPE it MIGHT work.

If they are wanting to cut the costs of bracing it's because they see themselves paying out on BOTH bracing and surgery on too many kids. That is likely what they will be doing with my one daughter. The other only had surgery so they saved money on a brace with her. That makes some sense though I still don't believe it.


And isn’t it convenient that what apparently will benefit the insurance companies also benefits the surgeons? And obviously it will, because if you don’t brace, the curves WILL become bigger, I think it was you who showed that with the study in Ireland.

If that is true then why do some kids never reach surgery territory despite not bracing?


Are they sure the people signing up really are random?

No. That's not how it works. If you agree to enter the study a computer randomly assigns your child to one of two groups. It has zip to do with the parent's preference. Parents with strong preferences never enter the study in the first place.


As Sharon points out, are they trying to weed out those who might have conditions that might not be representative of the larger scoliosis population for bracing results?

I'm an amateur but I think this should be given more attention. Marfan's syndrome scoliosis is known not to respond to bracing for example. Although Marfan's is relatively rare in the general population, it is less rare in the population of kids with scoliosis. I think we can guesstimate the number of Marfan's or related cases in any brace study population and just subtract that number arbitrarily from the possible bracing success column. That may be an over statement but I don't think so. I think it would be a step in the right direction to cleaning up the bracing literature.

Now we still have the case where Marfan's goes undiagnosed in these studies... neither our pediatrician nor our surgeon nor the geneticist think my girls have Marfan's and we know they don't meet the criteria now but there have some mild connective tissue disorder. In any case it is very likely NOT AIS and I'm just saying because they don't have a solid diagnosis, they would be selected for a study on AIS and bracing and still might skew the results.

It's reasons like this and a million more that make the bracing literature the miasma it is through no fault of the researchers.


Funny how the highest rate was separated out, but the lowest rates weren’t and in that case the higher average was used.

I think you are misunderstanding the statements. I think they went as far as the data allowed. If they didn't break out the data into smaller groups it's because the data don't support doing that. The error bars are wide... they are lucky to be able to identify the two groups at all.

mamandcrm
05-16-2009, 07:54 AM
...but is there any statistically relevant poll out there of surgeons in regard to what percentage think bracing works? I just don't know how any of us would know what most surgeons think on this point unless they all answered the question (and how the question was worded). I know that my daughter's surgeon (who is the chief of the pediatric orthopedic department at a major hospital) thinks bracing works for some kids. By "works" she mostly means, holds or slows curve progession suffient to avoid surgery.

I agree with Ballet Mom that bracing has a place. For some children, it works to hold their curve (or maybe even improve it in some cases). Those children are represented here on the forum. The difficulty is figuring out who to brace not whether to brace at all.

concerned dad
05-16-2009, 08:23 AM
...but is there any statistically relevant poll out there of surgeons in regard to what percentage think bracing works? .

The closest poll or survey to what you are looking for that I am aware of is the Equipoise study.
I mentioned it here (http://scoliosis.org/forum/showpost.php?p=70599&postcount=100)

I just reread my post. This was perhaps my first inkling of doubt about the logic of bracing my (post menarchal) daughter. She was in the Spinecor at that time.

This is the paper
Professional Opinion Concerning the Effectiveness of Bracing Relative to Observation in Adolescent Idiopathic Scoliosis. Dolan, Lori A. PhD *; Donnelly, Melanie J. MD +; Spratt, Kevin F. PhD +; Weinstein, Stuart L. MD *
[Article] Journal of Pediatric Orthopaedics. 27(3):270-276, April/May 2007.

concerned dad
05-16-2009, 08:50 AM
CD:


ď70% of kids are unnecessarily braced. Doesnt this make you pause and think?Ē

I would have to look at the study, I donít have time to, but Iím not sure I feel very confident thatís a true statement with the amount of conflicting opinions in this field.



You have to remember that this Daniellson paper followed up on some of the patients that were in the last, large, SRS Bracing study. That 1995 study has been shown to be flawed. Danielsson tried to salvage what they could.

After a mean of 16 years after maturity and at a mean age of 32 years, the advantage of early bracing versus observation in patients with AIS and a curve size of 25į to 35į was seen during adolescence and not during the time after maturity. No patients in either group, bracing from inclusion or observation as the intended treatment, underwent surgery after maturity. Six patients (7%) had a curve size exceeding 45į, 1 in the initially braced group and 5 in the initially observed group (not significant),with none exceeding 48į. Patients braced from the start had a significantly smaller curve magnitude at follow-up, but the difference between the groups was within themeasurement error. Our present results do not change the principal conclusion of the original SRS study: that well-performed brace treatment prevents curve progression during adolescence in patients with moderate AIS, while observation as the intended treatment allowed 70% of patients to escape any treatment at all and left 10% with surgical treatment and 20% with brace treatment.

Ballet Mom
05-16-2009, 01:23 PM
ďNo. That's not how it works. If you agree to enter the study a computer randomly assigns your child to one of two groups. It has zip to do with the parent's preference. Parents with strong preferences never enter the study in the first place.Ē

Random means random. That would mean every patient that came into a participating orthopedic docís office was placed in the study. If the patients are allowed to self-select, then itís not random to begin with. Then the possibility becomes that only, or a large percentage of, the people with a genetic basis for their scoliosis would end up in the study and not people with other types of scoliosis as most people will want to try bracing. This would make the study not applicable to the general scoliosis population and with no means to make an accurate determination of whether to brace or not. I believe there are probably multiple causes of scoliosis. It also doesnít reflect the many different attributes of the patients in the study, whether they are overweight, have a flexible spine, etc. and so makes it much too broad a resulting generalization. As scoliosis is a very complex and relatively rare condition, it appears to me that these studies just donít have the numbers to make many generalizations at all i.e.:


ďI think you are misunderstanding the statements. I think they went as far as the data allowed. If they didn't break out the data into smaller groups it's because the data don't support doing that. The error bars are wide... they are lucky to be able to identify the two groups at allĒ.

Iím not misunderstanding the statements at all. Thatís exactly what Iím saying. If they canít even break the study down into increments that actually help in prediction of progression for various meaningful Cobb angles, what good is it other than to make very rough and broad generalizations? Those numbers reported are absolutely useless for many of the cases out there. Certainly the results of most of these studies are not specific enough to start excluding people from certain treatments such as bracing. And I think itís crazy to keep insisting that these studies actually reflect whatís going on in any specific scoliosis case. They are simply grand generalizations by the researchers to give doctors whatever little insight they could glean from a very limited sample of patients.

I feel like Iím talking to a stump here. Rigidly immoveable. I really donít have this much time to spend on the forum, Iím getting behind in my own work. I believe there is a surgical agenda going on in this forum by at least one person whose real identity is questionable in my mind.

I suggest that parents walk with their feet if they are interested in trying to stop their childís curvature from progressing and are willing to support their child in the bracing process (especially if the initial curve is 35 degrees or less) and they come across an orthopedic surgeon who doesnít offer them the option of bracing. I suspect when the loss of business hits that surgeonís pocketbook perhaps theyíll change their treatment options.

Parents do have power, and obviously bracing doesnít guarantee anyone will have success, but the scoliosis studies out there are so weak that they canít possibly apply to the general scoliosis population at this point and they have no idea who bracing will work for except within some large generalizations. And they could be harming your childís health.

I wish everybody out there the best of luck with their childís or their own treatment. It is a very complex and difficult condition to deal with and I hope for the best for everybody.

Pooka1
05-16-2009, 01:30 PM
Random means random. That would mean every patient that came into a participating orthopedic docís office was placed in the study.

Breath-taking.

So if a parent refuses do they pull out a pistol?

leahdragonfly
05-16-2009, 04:41 PM
Balletmom,

You seem to have forgotten that we are all entitled to our own opinions here, including Sharon. It doesn't matter what you think of her personally, name calling is offensive and immature (and not to mention, a very poor show of behavior for any of the under-18's who may be reading).

Your post has been reported as abusive, and I hope it will be removed in keeping with the guidelines here. Please remember to play nicely if you wish to participate.

By the way, your repeated references to those of us who have scoliosis and children with scoliosis are offensive as well. Your child could have "genetic scoliosis" too, even if you have a straight spine. I'm really not sure how you think your child's scoliosis varies from my child's or how this is relevant at all. You need to be more aware of your tone in regard to this type of comment.

Pooka1
05-16-2009, 04:48 PM
I don't mind her name calling but I do mind putting out ridiculous claims that folks will be enlisted in a study whether they consent to it or not just by walking through the clinic door.

That misinformation could scare folks away from visiting an orthopedic surgeon.

leahdragonfly
05-16-2009, 04:58 PM
Balletmom,

Maybe you are unaware that ALL random trials for all types of medical conditions require full informed consent of the patient/parent, and that in ALL randomized studies the patient/parent can opt out or decline to participate in the study. This is STILL a legitimately randomized trial.

You assume that parents who were braced themselves would reject bracing their own child. In talking with many other scoliotic parents of children with scoliosis, it is quite the opposite, the parents want to be more aggressive with treatment in order to avoid progression. You shouldn't make assumptions about things you know nothing about.

I personally try to make decisions for my child based on scientific evidence, not just anecdote or convention. People like you who object to BrAIST because it might take away your access to bracing your child (and Celia, I know you're out there too--shame on you), let me ask you this...If bracing were shown to be entirely ineffective for scoliosis, why would you want to brace???

concerned dad
05-16-2009, 07:48 PM
I think Ballet Mom is thinking of consecutive series. That method of selecting a cohort is not appropriate for this study.
It IS random in that once you agree to participate then your treatment is randomly assigned.
Remember the study is funded by the United States National Institutes of Health, the Canadian Institute of Health Research, and the Shriners Hospitals. Pretty good pedigree. ( I dont think SHriners has an anti-bracing agenda so they can do more free surgeries.:D)

Ballet Mom was pointing out a weakness in the study. There are others; it is non blinded (to the patients - pretty hard to not be aware you're in the braced cohort);
it is not placebo controlled - yeah, sign me up for that, you'd need to wear a fake brace;
there are probably other shortcomings also that are unavoidable.
On the other forum a poster pointed out a very valid weakness and the study was actually changed (to include curves below 25 degrees, it now goes down to 20)
But, I think they're giving it a good shot. God Bless the kids participating - they may help our childrens children.

concerned dad
05-18-2009, 10:12 AM
Going back to the original theme of this post, this weekend I read and listened to a heartwarming story linked from Dr Hey's Scoliosis Blog. Perhaps some here may enjoy also.

Take a listen to this NPR story, and let's all remember to thank even the members of the team who are not always directly helping at the point of care. It takes the full team, both behind the scenes and "on-stage" to make it work.

encouraging story on npr about prayer (http://drlloydhey.blogspot.com/2008/12/encouraging-story-on-npr-about-prayer.html)

I hope this post (or any it may bring) does not violate the Forum policy.

CHRIS WBS
05-18-2009, 11:24 AM
I have read this once before CD and indeed found it heartwarming. This doctor came very close to losing his leg many years ago and underwent multiple surgeries. It is what ultimately led him to his chosen career, and he never forgets to thank God for his many blessings. Prayer is an important part of his life. I have much admiration for him.

mamamax
05-22-2009, 09:38 PM
Going back to the original theme of this post, this weekend I read and listened to a heartwarming story linked from Dr Hey's Scoliosis Blog. Perhaps some here may enjoy also.

Take a listen to this NPR story, and let's all remember to thank even the members of the team who are not always directly helping at the point of care. It takes the full team, both behind the scenes and "on-stage" to make it work.

encouraging story on npr about prayer (http://drlloydhey.blogspot.com/2008/12/encouraging-story-on-npr-about-prayer.html)

I hope this post (or any it may bring) does not violate the Forum policy.

Wow - that was great listening CD thank you. Glad you posted this, put the link in my favorites and will be visiting it more often. Hope it didn't break any forum rules either - certainly can't imagine why it would. Heartwarming - truly.

Pooka1
05-23-2009, 08:36 AM
Going back to the original theme of this post, this weekend I read and listened to a heartwarming story linked from Dr Hey's Scoliosis Blog. Perhaps some here may enjoy also.

Take a listen to this NPR story, and let's all remember to thank even the members of the team who are not always directly helping at the point of care. It takes the full team, both behind the scenes and "on-stage" to make it work.

encouraging story on npr about prayer (http://drlloydhey.blogspot.com/2008/12/encouraging-story-on-npr-about-prayer.html)

I hope this post (or any it may bring) does not violate the Forum policy.

I hope fluff like that doesn't violate any forum policy.

The problem comes when folks cross the line and claim non-scientific methods are effective in non-scientific ways without presenting evidence.

Science remains the only way of knowing anything. Prayer as a type of placebo is part of science.

Ballet Mom
05-23-2009, 11:32 AM
I'm kind of interested in the last post in Dr. Hey's blog of May 21st, 2009. Does anyone have any comments regarding fusion surgery on a 36 degree curve? It seems crazy to me as the spine shown is really not that bad. Didn't someone say at some point that it was illegal to do fusion surgery on less than a specified number of degrees? Personnally, unless there are other physical problems in that patient, I really rather feel sorry for the person. Comments anyone?

http://drlloydhey.blogspot.com/

LindaRacine
05-23-2009, 11:46 AM
I'm kind of interested in the last post in Dr. Hey's blog of May 21st, 2009. Does anyone have any comments regarding fusion surgery on a 36 degree curve? It seems crazy to me as the spine shown is really not that bad. Didn't someone say at some point that it was illegal to do fusion surgery on less than a specified number of degrees? Personnally, unless there are other physical problems in that patient, I really rather feel sorry for the person. Comments anyone?

http://drlloydhey.blogspot.com/

Yikes. That's definitely a small curve. He does state that it's "painful," which is the magic word. There's no law about how large a curve has to be before it's operable.

Since we don't know anything beyond what's on the blog, we can't know whether it was a good or bad thing. I would hope that, if it was my child, we would have tried every non-surgical option before doing a log fusion.

--Linda

concerned dad
05-23-2009, 01:49 PM
It's likely one of two things.
1. The pain
2. Boat payment due

:eek:

sorry, couldnt resist

Pooka1
05-23-2009, 02:09 PM
It's likely one of two things.
1. The pain
2. Boat payment due

:eek:

sorry, couldnt resist

It's rare I find someone as cynical as I...

I like it!

:D

Ballet Mom
05-23-2009, 06:41 PM
2. Boat payment due

I have to admit that crossed my mind too, mainly because I'm pretty sure I've seen worse x-rays of my daughter's spine!