PDA

View Full Version : which brace is better for lower lumbar?



kerrifales
03-30-2011, 08:30 PM
My daughter will be meeting with the spine specialist in a few days for the first time. We know from meeting with the general doc in our town, that her curve is in the lower lumbar region and measures 38*, she is 13 years old. I have heard alot about the cheneau brace, but wasn't sure which one everyone thought was best for a curve in that region.Any info would be great...

Pooka1
03-30-2011, 08:43 PM
My daughter will be meeting with the spine specialist in a few days for the first time. We know from meeting with the general doc in our town, that her curve is in the lower lumbar region and measures 38*, she is 13 years old. I have heard alot about the cheneau brace, but wasn't sure which one everyone thought was best for a curve in that region.Any info would be great...

The only info that will matter is what your surgeon says. Nobody here has any expertise to say which brace is best for lumbar curves.

That said, the Charleston night-time brace is supposed to work best on lumbar curves as opposed to other curves, not as opposed to other braces. I don't know what that translates into in terms of overall efficacy rate.

You might try getting that radiograph and bringing it to the surgeon. It may save him having to re-radiograph her if he is okay with the quality of it. He will likely do his own angle determination. Its worth a shot.

Good luck.

Ballet Mom
03-31-2011, 11:27 AM
The night time braces do get very good results with lumbar curves. I think the Providence brace stops the progression in about 95% of patients with lumbar curves. Unfortunately, I believe both major night time braces (Providence and Charleston) are only recommended to curves up to 35 degrees maximum, as far as I know.

Therefore, you're probably looking at some sort of TLSO, such as the Boston brace. You can certainly bring up the Cheneau brace, but lots of doctors have never heard of it. I brought it up to one surgeon, and I got a lecture on the Copes brace and medical treatment in Mexico, lol.

Pooka1
03-31-2011, 02:32 PM
I think the Providence brace stops the progression in about 95% of patients with lumbar curves.

Citation please.

Thanks in advance.

Pooka1
03-31-2011, 02:57 PM
Could we take the discussion of the research back to the research section, please?

You are not allowed to limit the knowledge of others.

Pooka1
03-31-2011, 03:37 PM
It's not knowledge that's being offered - it's just spin -

That's only your opinion. My "spin" is what the surgeons admit.


The reason I asked Pooka and Ballet Mom to take their discussion of the research to the research section is that their entrenched beliefs about bracing

I have no beliefs about bracing. You continually misunderstand this. The state of the evidence is what it is and doesn't require belief of any stripe. It requires acceptance of the state of affairs.


In support of these beliefs, each of them will post their pet research and dissect any conflicting research.

This is a lie w.r.t. me.


If you're interested, you can go down to the research sectionand get some sense of what researchers are saying. Basically, what you'll learn is that medical research is really crappy and almost no decisions that doctors make are based solely (or, in the case of scoliosis) even primarily on research studies. Hence the request that research discussions stay in the research section - because they don't have very much to do with how medical decisions are reached, and having the research spun up here in the parents forum just muddies the water.

Here's the spin.

Pooka1
03-31-2011, 04:05 PM
I spend much of my forum time trying to defend the concepts of science, evidence, skepticism, and intellectual honesty. These matter in ALL fora but the need to defend these things is most acute in the research section.

Hdugger has recently started advocating shunting the counterfactual claims to exactly where they don't belong... the research section.

Thus we are at cross purposes.

jrnyc
03-31-2011, 04:55 PM
i am amazed at anything that works 95% of the time!
i would want to see proof of such a claim before i could believe it!
that goes for ANY claim of anything with a 95% success rate!

jess

Pooka1
03-31-2011, 04:58 PM
i am amazed at anything that works 95% of the time!
i would want to see proof of such a claim before i could believe it!
that goes for ANY claim of anything with a 95% success rate!

jess

Yes exactly.

The obvious problem is that statement occurs in an area of the forum where people who are not necessarily familiar with the state of evidence read it and be mislead.

The other obvious problem is that some here don't give a hoot about innocent folks being mislead.

Ballet Mom
03-31-2011, 05:24 PM
So am I allowed to answer questions on this forum or not? Sheesh.

Pooka1
03-31-2011, 05:47 PM
Entrenched beliefs

I consider this an ad hom. Belief is only required when you want to claim something is true when there is no evidence.

I have not done that and therefore you have NO CALL to accuse me of that. I have no beliefs and it is an insult to accuse me of it.

I accept facts and reject claims provisionally until evidence is proffered.

I have not tried to insult you. If I have then I apologize. We are all in the same sandbox.

Ballet Mom
03-31-2011, 09:04 PM
You're allowed to do anything.

I think the discussions about personal experience are always helpful, and the same way we deal with people coming in and talking about surgery. So, by all means, talk about your personal experience with bracing all you want.

I squawked when the discussion moved away from personal experience and into research. I think that's *always* dicey up in the general areas.

For a view of how it looks from here, imagine that someone came in saying that their doctor was planning on doing a fusion from the top to the bottom of their curve, and try to get 50% correction using pedicle screws, and I started dragging in research about how fusions should be longer then that, and how he should try to get more correction, and why wasn't he using hooks on the top. I think it would be pretty obvious to everyone that I had no place second-guessing their doctor about where exactly he was going to fuse, or how much correction he was trying to get, or whether he was using hooks or pedicle screws. I mean, what the hell do I know? How would I be qualified to interpret the research, or even understand what weight the research carries in the decision.

If people want to discuss research in the research section, that's fine. If they want to explore alternative treatments in the non-surgical section, that's fine. But don't start dragging poorly-understood research up into the general section and presenting it as if it's known fact.

Personally, I'd like to see a thread actually stay on topic instead of going off on these ridiculous rants. What exactly have you added to the OP's original question? That'll teach anyone to ask a simple question and expect different people to add their knowledge and experience. If the OP wanted to wait until the doctor gave his prescription, she would have waited and not asked the question to us. I'm not going to self-censor to make you happy.

And Pooka is capable of finding the data very simply if she was interested. I'm not here to provide her with studies backing up every single thing I say. Is anyone else expected to provide data for every single thing they say on this forum? No, I didn't think so.

kerrifales
04-01-2011, 12:22 AM
I wanted to thank everyone for their opinion... that is why I posted the question, I was hoping to hear from several people and get their opinions. I appreciate everyones response, of course I know the people that respond to me are not doctors, that really is why I wanted to post the question to people with personal experiences in this situation. I am one that fully believes docs do not know everything, and thru the years of other medical issues with my daughter, and my father I have always been very proactive and done my own research. So, just wanted to say I value everyones response, and personal opinions...that is exactly what I wanted. Back to the cheneau brace--- does anyone know why it is not used alot or heard of by some docs? I have read several personal stories with kids whose curves seem similar to my daughters, and that brace was used with some great response. I assumed that we would not be able to just use the night time brace with my daughters curve as severe as it is, but that would be great for her. My daughter has a school friend that just also was diagnosed with scoliosis, went to the same spine spec. we will be using , and was told she was going straight to surgery, with no try of a brace. Of course, her curve measured 50* I think. Just hoping I don't end up with one of those surgeons, that are "surgery" all the way, and really are not open to trying some bracing... Well again thank you, I really enjoy reading everyones "different" opinions and personal experiences. Keeping my fingers crossed we get some good news tuesday, will keep u all posted!

Pooka1
04-01-2011, 05:14 AM
And Pooka is capable of finding the data very simply if she was interested. I'm not here to provide her with studies backing up every single thing I say. Is anyone else expected to provide data for every single thing they say on this forum? No, I didn't think so.

You have no evidence for the statement that the Providence brace is effective 95% of the time. NONE.

Watching and waiting could have a 95% success rate with lumbar curves. That statistic you stated is likely all false positives.

If you had evidence for that statement then there should be no lumbar curves in the BrAIST study with surgeons at no less than 26 hospitals agreeing it is ethical to randomize half the kids to a "no brace" group. I recall nothing in the protocol about excluding lumbar curves.

If you had evidence for that statement then Sponseller, experienced pediatric orthopedic surgeon who thinks bracing is worth a try, doesn't know about it. It's your own "private" evidence. Again.

Pooka1
04-01-2011, 05:21 AM
I wanted to thank everyone for their opinion... that is why I posted the question, I was hoping to hear from several people and get their opinions. I appreciate everyones response, of course I know the people that respond to me are not doctors, that really is why I wanted to post the question to people with personal experiences in this situation. I am one that fully believes docs do not know everything, and thru the years of other medical issues with my daughter, and my father I have always been very proactive and done my own research. So, just wanted to say I value everyones response, and personal opinions...that is exactly what I wanted. Back to the cheneau brace--- does anyone know why it is not used alot or heard of by some docs? I have read several personal stories with kids whose curves seem similar to my daughters, and that brace was used with some great response. I assumed that we would not be able to just use the night time brace with my daughters curve as severe as it is, but that would be great for her. My daughter has a school friend that just also was diagnosed with scoliosis, went to the same spine spec. we will be using , and was told she was going straight to surgery, with no try of a brace. Of course, her curve measured 50* I think. Just hoping I don't end up with one of those surgeons, that are "surgery" all the way, and really are not open to trying some bracing... Well again thank you, I really enjoy reading everyones "different" opinions and personal experiences. Keeping my fingers crossed we get some good news tuesday, will keep u all posted!

I think you know the score. Most players do or eventually come up to speed. Some never do.

In re the Charleston and curve magnitude, my kid was in the low 30*s when she got the brace. But her case is not going to be generally applicable because she has some type of connective tissue disorder and there is some evidence no brace will work in those cases.

In re the Cheneau, it was developed in Europe and there are only a relatively few othotists in the US who fit the brace. The claims are very large for this brace though there is not much published data.

There a LOL aspect to the Cheneau orthotists in the US... if you believe some of the testimonials, some if not all of these guys claim they are the only ONE certified orthotist here to fit the brace. Heh.

Pooka1
04-01-2011, 05:38 AM
Back to the cheneau brace--- does anyone know why it is not used alot or heard of by some docs? I have read several personal stories with kids whose curves seem similar to my daughters, and that brace was used with some great response.

There are great responses to this brace on this forum but mainly in the juvenile IS (JIS) crowd.

There are also great responses to other braces in the JIS crowd.

From these few testimonials, brace response in JIS appears to be different from that for AIS as a broad, general statement that may not be borne out over larger groups. It needs more study but I am not so sure bracing in JIS will be such a hot topic in the future if VBS pans out in a big way.

Good luck on Tuesday.

JessicaNoVa
04-01-2011, 09:53 AM
There a LOL aspect to the Cheneau orthotists in the US... if you believe some of the testimonials, some if not all of these guys claim they are the only ONE certified orthotist here to fit the brace. Heh.

I do not believe our orthotist, Luke Stikeleather, makes any such claim.

mariaf
04-01-2011, 10:00 AM
Hi Kerrifales,

I would definitely go with whatever your doctor recommends. It is really the only opinion that matters.

That said, I agree with those who said they doubt ANYTHING is effective 95% of the time.

One more point. While night braces (i.e., Providence, Charleston), and in fact all braces, are mostly used to treat moderate curves (meaning that they would not be prescribed for curves of 50 degrees, 60 degrees, etc.), I would not rule out a night time bending brace for a 38 degree curve.

Again, talk to your doctor - but I do know a few patients who were prescribed the Providence for curves of similar size as your daughter's and so far, so good.

Best of luck to you!

mariaf
04-01-2011, 10:07 AM
There are great responses to this brace on this forum but mainly in the juvenile IS (JIS) crowd.

There are also great responses to other braces in the JIS crowd.


Great point, Sharon.

I believe that some patients (i.e., younger kids (JIS patients) with flexible spines and small to moderate curves) would be good candidates to respond to ANY treatment (Cheneau, TLSO, Providence, VBS, etc.).

While an older child (AIS) with a larger, stiffer curve might fail if any or all of the above were tried and go on to require fusion.

I have heard doctors even say they do not believe there is a huge difference among braces as long as they are well-fitting braces made by a trained orthotists. Or to put it another way 'a brace is a brace'.

Ballet Mom
04-01-2011, 10:25 AM
I wanted to thank everyone for their opinion... that is why I posted the question, I was hoping to hear from several people and get their opinions. I appreciate everyones response, of course I know the people that respond to me are not doctors, that really is why I wanted to post the question to people with personal experiences in this situation. I am one that fully believes docs do not know everything, and thru the years of other medical issues with my daughter, and my father I have always been very proactive and done my own research. So, just wanted to say I value everyones response, and personal opinions...that is exactly what I wanted. Back to the cheneau brace--- does anyone know why it is not used alot or heard of by some docs? I have read several personal stories with kids whose curves seem similar to my daughters, and that brace was used with some great response. I assumed that we would not be able to just use the night time brace with my daughters curve as severe as it is, but that would be great for her. My daughter has a school friend that just also was diagnosed with scoliosis, went to the same spine spec. we will be using , and was told she was going straight to surgery, with no try of a brace. Of course, her curve measured 50* I think. Just hoping I don't end up with one of those surgeons, that are "surgery" all the way, and really are not open to trying some bracing... Well again thank you, I really enjoy reading everyones "different" opinions and personal experiences. Keeping my fingers crossed we get some good news tuesday, will keep u all posted!

The Cheneau brace is a European brace, and the doctors in the US, for the most part, don't look to Europe for their information. It's unfortunate because in several areas, the US could benefit from doing so. I'm not talking about the Cheneau brace specifically, but studies in general and even the use of Accutane, a dangerous prescription drug and its dosage. US physicians are taught to be very aggressive in treatment and they don't want the patient to come back if at all possible. So you have surgery for scoliosis, and you have too high dosage of Accutane...too bad for the people who develop major complications.

Good luck, I hope you are prescribed the brace that is going to work best in your daughter's situation. None of us know what that is.

Ballet Mom
04-01-2011, 10:26 AM
I do not believe our orthotist, Luke Stikeleather, makes any such claim.

Luke Stikeleather is a completely honest person. He told me not to fly out to visit him because my daughter's current brace had stopped the progression of her curve and was working.

Ballet Mom
04-01-2011, 10:29 AM
Watching and waiting could have a 95% success rate with lumbar curves. That statistic you stated is likely all false positives.


I believe that was around the rate that lumbar curves were achieving with vertebral stapling also...so why aren't you saying that when discussing stapling? Why are they doing major spine surgery when watching and waiting could achieve those results? You're very selective in your criticisms.

mariaf
04-01-2011, 10:33 AM
I'm not talking about the Cheneau brace specifically, but studies in general and even the use of Accutane, a dangerous prescription drug and its dosage. US physicians are taught to be very aggressive in treatment and they don't want the patient to come back if at all possible. So you have surgery for scoliosis, and you have too high dosage of Accutane...too bad for the people who develop major complications.

Just curious - what do you mean 'they don't want the patient to come back'?

When my daughter developed mild to moderate acne (I believe acne is what Accutane was originally developed for) her dermatologist was definitely not over aggressive. In fact, I had a teenage daughter asking me, on a daily basis "why can't he just fix this"?!!

We went back several times and finally he found a regiment (topical medicine, and some common sense suggestions to keep the skin as oil-free and clean as possible, etc.) that worked somewhat.

He also told us honestly that acne is a battle you fight to try to control it but hormones and other factors are involved and there is no magic pill or solution.

But let's get back to scoliosis :-)

mariaf
04-01-2011, 10:41 AM
I believe that was around the rate that lumbar curves were achieving with vertebral stapling also...so why aren't you saying that when discussing stapling? Why are they doing major spine surgery when watching and waiting could achieve those results? You're very selective in your criticisms.

Not sure why everything has to be a confrontation, but please show me where 95% success is claimed with vertebral stapling of lumbar curves.

Pooka1
04-01-2011, 10:46 AM
Why are they doing major spine surgery when watching and waiting could achieve those results?

This statement can only come from someone completely unfamiliar with this field. Because you are VERY familair with this field, I conclude you are arguing disingenuously.

That is not a personal comment... you are not your arguments. You can aspire to do better.

mariaf
04-01-2011, 10:46 AM
Just hoping I don't end up with one of those surgeons, that are "surgery" all the way, and really are not open to trying some bracing...

I hope so too.

I can only speak of our experience with the staff at Shriners in Philly and they are definitely not quick to push for surgery if they feel there is any way to avoid it.

In fact, unlike our former ortho, they are open to hearing a parent's views about treatment. Of course, if they feel something is detrimental to the patient they will advise against it, but they are very open to listening and involving the parent in the child's treatment.

For example, a while back I wanted to space David's x-rays out a bit more. I was concerned about radiation exposure and he had been stable for quite some time. Dr. Betz agreed to space out the x-rays as long as we came at regular intervals for exams so he could check him visually, with scoliometer, etc.

Pooka1
04-01-2011, 10:50 AM
Here is a common fallacy that pops up from time to time.

That there is no convincing evidence bracing works and surgeons admitting that is NOT equivalent to "surgery all the way."

It's a variant on the "blood from a stone" fallacy.

ETA: Just because there are no conservative treatments with convincing evdience does not mean that surgeons only ever wanted to do surgery. I doubt any of them want to see a conservative measures fail so they can then do surgery. Thiis is an ad hom against surgeons.

jrnyc
04-01-2011, 11:38 AM
just a note...i thought Accutane was taken off the market in America...it is a dangerous drug, i believe...

jess

mariaf
04-01-2011, 01:34 PM
Yes, I believe it was pulled quite some time ago.

Ballet Mom
04-01-2011, 03:47 PM
Yes, Accutane was taken off the market by Roche itself when it started losing lawsuits of significant dollar amounts. Accutane is actually isotretinoin and is made generically by about 11 other companies under different names, but I say Accutane because that's the name people recognize.

The thing about isotretinoin is that the harmful effects are dosage related. European doctors give acne patients much smaller dosages of the drug than some American doctors do and so don't get the kinds of side effects seen here in the US. And isotretinoin is supposed to be reserved for the most severe acne which causes kids faces to disfigure, which it often isn't.

It's really sad to see some of the pictures of these kids who have to deal with it. Lots of them really lose the will to live and some commit suicide. It's really quite tragic. It reminds me a lot of scoliosis in the sense that someone gets disfigured during puberty when they weren't before. So I don't think isotretinoin should be removed from the market, but I don't know why doctors think it's okay to give such high doses to kids here. The lower the dose given, the more people will get acne again, although usually not as severe. I don't understand why they need to risk the side-effects, just so the kid doesn't have to repeat a course like in Europe.

And isotretinoin is used to treat other diseases also such as cancer and ichthyosis.

I'm actually hoping the University of California at San Diego is close to developing a vaccine against acne that would protect kids from this acne curse. It would also save billions of dollars in medical costs.

mamandcrm
04-01-2011, 07:24 PM
It needs more study but I am not so sure bracing in JIS will be such a hot topic in the future if VBS pans out in a big way.

Sorry, I don't know how to pull a quote from a post properly. But I think this is very subjective. We chose bracing over VBS (we had a surgery date scheduled). One is not more right than the other, and it comes down to what is right for that child and family. Elective VBS surgery was not the right choice for us at that time. Maybe some day things will change, and we (and our child) will want to do it. But I don't think we made an unusual decision. For others, bracing is not the right choice, and the surgery is.

And I am aware of only one orthotist who describes himself as being the only one certified for RC. It is not Mr. Stikeleather.

mariaf
04-01-2011, 09:35 PM
The last two posts and posters are right on the money with regard to there being no 'one size fits all' treatment that works for everyone.

I don't know if I would call VBS 'elective' surgery however. I guess technically it is, as are a lot of surgeries. One could, for example, live with pain or have a particular surgery.

I guess what I mean is that for my son, he was not even 6 years old with a 40 degree curve - he was most likely going to need SOME form of surgery to correct this at some point. We chose VBS not only to avoid a decade of full time bracing, but to avoid either growing rods or fusion. While I don't have a crystal ball to say whether or not he will ever require fusion, we have dodged the growing rod bullet for over 7 years now.

So I guess for us it was elective only in the sense that we chose one surgery over another.

Pooka1
04-02-2011, 09:58 AM
It needs more study but I am not so sure bracing in JIS will be such a hot topic in the future if VBS pans out in a big way.

Sorry, I don't know how to pull a quote from a post properly. But I think this is very subjective. We chose bracing over VBS (we had a surgery date scheduled). One is not more right than the other, and it comes down to what is right for that child and family. Elective VBS surgery was not the right choice for us at that time. Maybe some day things will change, and we (and our child) will want to do it. But I don't think we made an unusual decision. For others, bracing is not the right choice, and the surgery is.

Well my statement is worse than subjective ... it is a lay spit in the wind unsupported by any evidence. :-)

I restricted the scenario to VBS panning out in a big way. By that I mean 95% or better of kids will avoid needing fusion through the adolescent growth spurt. I would extend that to avoiding surgery for life but the jury will necessarily be out on that for decades so I won't reference it.

So if the 95% turns out be the case then you compare that to the fusion rate of braced JIS cases. If it is much better than that for bracing then the choice of treatment will self select to virtually all VBS. It will become the standard of care if it beats the fusion rate during the growth spurt for bracing by a mile. The parents will make it the standard of care by their selection even if it isn't so designated.

What is the fusion rate for brace JIS cases by the way? And what is it for VBS?