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bas2101
11-04-2009, 07:07 AM
I would like to know who decides that orthopedic surgeons are the only acceptable physicians to treat scoliosis? Where is this written? Is this scoliosis law, or what over time, has become what is accepted?

Over the last 7 years, my daughter has seen 4 top pediatric orthopedists and orthopedic surgeons in NYC, whom all specialize in scoliosis. If I had followed their advice, she would have either 1) had years of growing rods with the 90% expectation that fusion would follow in the end 2) had 10 years of bracing with the 90% expectation that fusion would follow in the end.

One miscounted her ribs (she only has 11 sets), which in turn affected his surgical plan (I had to tell him how many sets she has). Another told me I would have to pay him for an additional visit if I wanted everything he advised in writing. Another said her surgery "could not wait until summer," which at the time, was only 5 months away (This was 2 years ago. Today she is not dead, her heart is not crushed, her curve is stable due to treatment sought elsewhere, she has grown over 4 inches (and still growing), and she has over 100% lung capacity. This is no way suggests she is in the clear, but obviously surgery could wait).

None of them found her Marfan-like symptoms (her PT did), other than ordering an MRI, none of them even attempted to find an underlying cause for her scoliosis (I have had to do this relentlessly on my own), none of them checked her lung capacity (her PT and European scoliosis specialist did), none of them addressed her pain (several of her therapists have at least tried), and none of them offered anything in the way of "prevention," other than what I listed above.

So, then why and how are pediatric orthopedic surgeons the "only people with the requisite training to treat scoliosis in children?" Please, I would like to know who decided this. Is it the monitor who is shutting down people's threads because they are exploring other options? Did NSF forum members make this decision? The Scoliosis Research Society? The American Surgical Society? Who?

While pediatric orthopedic surgeons are A choice in treating pediatric scoliosis, they are not the ONLY choice. And, no one has the right to determine that they are. If they knew all of the answers, none of us would be on this forum losing our minds daily in search of such answers. If/when my daughter gets surgery, THEN I will go to an orthopedic surgeon-surgery is what they do best. In the meanwhile, I am NOT convinced they have enough expertise in prevention-other than dismissing their patients who seek advice elsewhere.

hdugger
11-04-2009, 10:00 AM
I think there's concern that a child with an aggressive curve will fail to check in with an orthopedic surgeon, and thus miss the best window for surgery.

Beyond that, I'm in agreement. Orthopedic surgeons know surgery, for cases that progress that far. But since there is no solid medical information on what to do *until* a child/adult needs surgery, neither a surgeon nor any other medical doctor is much help for pre-surgical patients beyond simply tracking the progress of the curve.

Ballet Mom
11-04-2009, 11:51 AM
Your daughter wears a Rigo-Cheneau brace currently, isn't that correct? Did you get it here in the states, or did you travel to Europe to get it? If you got that brace here in the states, it had to be prescribed by a medical doctor from what I understand. I don't know if you can get braces in Europe without a doctor's prescription, perhaps it's different. (I'm not sure how the Spinecor gets through the cracks without an MD's prescription.)

I would be interested in knowing who the doctors are that prescribe Luke Stikeleather's Cheneau brace, I think it would be very helpful to people on this forum. Anyone whose kid is wearing one care to disclose who the doctors are that are prescribing them?

I am very pro-bracing and that is one of the reasons I believe kids should be being seen by a pediatric orthopedist...just to get a brace.

The second reason is exactly what hdugger stated, aggressive curve progression. The first surgeon we went to told me a story of a high school water polo player who wanted to go to the state water polo championship, when she finally came back in she had a curve of between 112 and 120 degrees. And the surgeon said it was a terribly difficult surgery (even though he's a really great spine surgeon). Surgeons don't want to see terrible things happen on the operating table either.

Third, the orthopedic surgeons are also required to find other causes of the scoliosis such as tumors, etc. Some scoliosis is due to genetic syndromes that need to be managed. Just because your daughter has Marfan-like symptoms doesn't mean she has Marfan's. And I believe that condition and diagnosis would be managed by her pediatrician, not the surgeon, other than monitoring the scoliosis curve.

I agree that if surgeons continue their push to discontinue bracing, their usefulness becomes much less, other than monitoring the curve for progression and checking for other serious diseases. I hope it doesn't happen because I would hate to have to fly to Europe for treatment where they still believe in and support bracing.

mamandcrm
11-04-2009, 12:24 PM
My daughter wears a Rigo-Cheneau made by Luke at Orthotic Solutions. She was not specifically prescribed a Rigo-Cheneau. She was prescribed a day-time TLSO by her doctor (that's what it said on the prescription), and the Rigo-Cheneau is a type of TLSO, as is the Boston brace and others. I walked into the fitting expecting a Boston brace because I wasn't aware that there was an alternative. It was just our good fortune that Luke, who is the local ortho to us, specializes in the Rigo-Cheneau.

bas2101
11-04-2009, 12:57 PM
I am not disagreeing that orthopedic surgeons have a place in scoliosis-clearly they do. And, a very important one in cases where a patient chooses surgery. But, I do not agree that they are the only physicians worthy of trying to treat scoliosis. And, their efforts at focusing on prevention are weak at best-at least in my experience and the experiences of many other parents I have spoken to who are trying to avoid surgery.

For a patient/parent of a patient who is trying to do everything they can to avoid surgery, what is the point in continually visiting an orthopedist who often times dismisses a patient's "alternative"efforts, while at the same time has nothing better to offer? It is very easy to get scoliosis x-rays from a pediatrician, in order to check for progression. While, orthopedists seems to be the "gods" of Cobb angle reading, having the same radiologist monitor x-rays will show progression.

I did not get my daughter's brace in the US. I got it in Spain. A prescription from her pediatrician was sufficient, and this might have been for my insurance purposes only. I do not believe you need a prescription specifically from an orthopedist to get Cheneau brace from Luke, or Grant Wood-both Cheneau makers in the US. I believe a prescript from a physician is enough to get any brace-I know several parents who have done so. I do not know who, if any orthopedic surgeons prescribe the Cheneau brace.

If orthopedists don't want to see terrible things happen to patients on the operating table, then it might behoove them to work in collaboration with patients who choose not to follow their advice at face value. In doing so, they wouldn't undermine a patients ability to choose for themselves. Just because a surgeon sees a magic 40-50 degree Cobb angle reading, and suggests surgery as the only option-there are still many patients who do not want to choose this option, and are then sent running for the door with nowhere left to turn. I know of orthopedists who refuse to see patients who do not follow their protocol, or who have demeaned them to the point of no return. I am not just speaking from my own experience. Luckily, I figured out where to turn after 5 years of looking, and it wasn't to any of the 4 orthopedists we visited in NYC.

Again, if my daughter eventually gets surgery, an orthopedic surgeon will obviously be the only option. But, while we are doing whatever we can to avoid it, I do not believe it is the only option-at least for us. If there were more orthopedists who were willing to be opened minded toward their patient's decision making, I might change my mind. I understand a few exist out there, however, I have yet to find one.

Pooka1
11-04-2009, 01:11 PM
[...]THEN I will go to an orthopedic surgeon-surgery is what they do best. In the meanwhile, I am NOT convinced they have enough expertise in prevention-other than dismissing their patients who seek advice elsewhere.

Surgeons don't have expertise in prevention if you equate that to having evidence.

The difference between surgeons and alternative treatment purveyors is that they admit this.

Nobody has evidence. Some, including some surgeons, have hope and are trying to gather evidence in a rational manner. Instead of trying to gather evidence, some alternative treatment purveyors are just taking people's money and experimenting on kids without calling it that unbeknownst to the parents.

Pooka1
11-04-2009, 01:18 PM
If there were more orthopedists who were willing to be opened minded toward their patient's decision making, I might change my mind. I understand a few exist out there, however, I have yet to find one.

Open-minded is one thing. I doubt you'll find a surgeon who will say that braces have been proven to fail every time and that there is no population of kids who can be helped by bracing. They are open-minded.

But you can't expect them to "bless" anything the parent/patient wants when there is no good evidence in support of it. They are professionals who are required to act in an intellectually honest manner and so have to admit when there is no evidence irrespective of what the patient/parent wants. That isn't being close-minded... it is just being realistic.

Now that's not to say they won't try unproven treatments like bracing. Bracing should be studied to rule it in or out once and for all if possible.

bas2101
11-04-2009, 02:23 PM
Plenty of alternative practitioners also admit that they don't have proven evidence that their treatment will necessarily help a particular patient. It is those who do that give everyone else a bad name.

And, there are surgeons who I suspect are willing to experiment on patients. I was told by one surgeon that my daughter had to have EPO (Erythropoietin) to reduce the need for blood transfusion. He would not allow her to donate or receive donated blood. She was at no higher risk than any other scoliosis patient for blood loss, and no other surgeon suggested or worse yet, forced this option. I found it very interesting that at this time, this surgeon was conducting research on "EPO use during scoliosis surgery" at the hospital in which he worked. And, he was more than willing to take my $500 to tell me this, in addition to the thousands he would have cost to do surgery (this of course was after I had to tell him how many rib sets she had-the head of pediatric orthopedics at a world re-known hospital mind you).

I don't expect any physician to bless anything they don't believe in. But, I also don't expect them to dismiss anything they are unfamiliar with.

Pooka1
11-04-2009, 02:41 PM
Plenty of alternative practitioners also admit that they don't have proven evidence that their treatment will necessarily help a particular patient. It is those who do that give everyone else a bad name.

You're right. I was wrong to say all alternative treatment purveyors are dishonest. That isn't true.


And, there are surgeons who I suspect are willing to experiment on patients. I was told by one surgeon that my daughter had to have EPO (Erythropoietin) to reduce the need for blood transfusion. He would not allow her to donate or receive donated blood. She was at no higher risk than any other scoliosis patient for blood loss, and no other surgeon suggested or worse yet, forced this option. I found it very interesting that at this time, this surgeon was conducting research on "EPO use during scoliosis surgery" at the hospital in which he worked. And, he was more than willing to take my $500 to tell me this, in addition to the thousands he would have cost to do surgery (this of course was after I had to tell him how many rib sets she had-the head of pediatric orthopedics at a world re-known hospital mind you).

That sounds dishonest. That said, I doubt many statements that are attributed to surgeons that are reported here were actually ever said, especially after I have thought I understood what I was being told only to discover I didn't. It's a matter of not having the same knowledge base and how certain things can be interpreted in more than one way and that's all BESIDES simply not hearing correctly or misunderstanding in other ways.

Until they go through many iterations here and a few passes through the surgeon, I don't believe some of my own claims about what our surgeon says.

And there are statements attributed to surgeons on this group that I would bet my house are not what the surgeon said/meant. It's not matter of people lying; They just don't have the tools to understand completely.


I don't expect any physician to bless anything they don't believe in. But, I also don't expect them to dismiss anything they are unfamiliar with.

I don't expect surgeons to dismiss anything for which they are unfamiliar with the evidence case. That is unprofessional. But unless we are talking extreme fringe treatments, I expect any experienced surgeon to be aware of the evidence cases for most alternative treatments. I mean I would be shocked if Samdani would make that statement on that torsion rotation video about how there is no proof PT permanently alters the course of scoliosis if he wasn't aware of the facts associated with that kind of statement. This is their game and patients have a reasonable expectation surgeons are good at their game.

Writer
11-04-2009, 02:48 PM
Medicine is an infinitely complex field, as is virtually any discipline once you start investigating aspects closely. Nobody in the field knows everything, in fact daily they know proportionately less and less because of the rapid expansion of published studies in hundreds of biomedical journals which no one can possibly keep up with thoroughly. The further away from one's narrow specialty, the less secure is one's mastery of the subject, though there are many cases of cross-disciplinary specialists.

With that consideration as background, it is understandable that pediatricians and other health care practitioners would tend to defer to orthopedists in treating scoliosis patients. Orthopedists specialize in deformities or functional impairments of the skeletal system. For better or worse, the ultimate method they have adopted for correction is surgery.

Physicians are the health care practitioners with typically the longest and deepest training in medical care. They have consequently from time immemorial been the anointed primary care supervisors. Most other specialties such as chiropractic and physical therapy developed fairly recently.

But still, nobody in any physician specialty knows everything, nor of course do those in others. What continues to be astonishing to me is how readily orthopedists dismiss evidence contrary to their current orthodox position, despite their incomplete knowledge of physical therapy. It appears that they do not *want* to know everything, particularly if the evidence, and there is plenty of it for non-surgical scoliosis treatment in journals they see in PubMed, would lead a parent or patient to a practitioner in another field. Thomas Kuhn, the famous historian of science, wrote a book about this phenomenon in 1962, but it's still surprising to see the principles he discusses in action. (The Structure of Scientific Revolutions). I think we are approaching a paradigm shift.

So the parents who are ahead of the paradigm shift, who instinctively sense that there has to be a way to intervene and prevent progression of a scoliosis, and not just wait helplessly and watch it get worse, often have to override the advice of their orthopedist. Thank heaven for the resolve and tenacity of parents like bas2101.

bas2101
11-04-2009, 03:16 PM
"I doubt many statements that are attributed to surgeons that are reported here were actually ever said."

I am not sure if you are referring to what I have posted, or the forum in general. As for what I have posted, I have most of what I included either in writing, and/or there was another person in the room who was also told what I was told. While there always room for interpretation differences, I am not convinced this is the case in many of my claims.

"Surgery could not wait until summer." Why? Because her scoliosis could wildly progress. There is no misinterpretation here, he was simply wrong. I have it in writing.

"Miscounted ribs." He admitted the mistake after I brought it to his attention. And, it changed his surgical plan-where he would fuse. No misinterpretation.

"Had to pay for another visit to get advice in writing." I asked for everything the ortho said during a visit, in writing-including when he said he was quite sure her scoliosis "was 10 degrees worse." He said I had to pay for another visit to get this in writing. I had to threaten to report him to get the information he told me. And, he was wrong-her scoliosis at that time was stable. No misinterpretation, with the exception of +/-Cobb angle reading.

Both plans-growing rods then fusion, and 10 years of bracing then fusion is what was suggested. The 10 years of bracing was recommended without much hope, but was all that was suggested. I have it in writing. I was also told if we did nothing-then 90% chance of fusion.

EPO mandatory-in writing. There was no getting around it other than going elsewhere.

As far as what they didn't do-there is no misinterpretation here-they didn't do it.

And, there is no misinterpretation of the several times I was told what I was doing elsewhere "is wrong."

Writer-you put into words what I trying to say, much better.

Pooka1
11-04-2009, 03:25 PM
But still, nobody in [nonbeliever community] knows everything, nor of course do those in others. What continues to be astonishing to me is how readily [nonbelievers] dismiss evidence contrary to their current [nonbeliever] position, despite their incomplete knowledge of [alternative therapies]. It appears that they do not *want* to know everything, particularly if the evidence, and there is plenty of it for [alternative treatments] in [mainstream locations], would lead a parent or patient to a practitioner in another field.

So much of what is written about alternative treatments... the persecution, the disbelief, etc. is directly mapable onto other issues in society that are known or suspected to be counterfactual. That should concern you that you are using a similarly constructed argument.

Also, what is considered "evidence" in certain alternative treatments is simply concidered bad science in the mainstream.


So the parents who are ahead of the paradigm shift, who instinctively sense that there has to be a way to intervene and prevent progression of a scoliosis, and not just wait helplessly and watch it get worse, often have to override the advice of their orthopedist. Thank heaven for the resolve and tenacity of parents like bas2101.

People sense a lot of things. Some sense Napoleon in the room with them. Many people have claimed to be ahead of the paradigm shift only to be revealed that they were just plain mistaken.

Wishful thinking and wanting to prevent progression don't automatically majick an effective treatment into existence.

The tenacity of parents like BAS2102 might be rewarded or it might just be the bazillionth hope that goes unanswered. You can't know at this point which way it will go unless you claim to be clairvoyant. What we do know is that some alternative treatment modalities like Schroth and bracing have been around for several decades and STILL have no evidence of efficacy.

Evidence is the game of the realists. Faith is the game of the believers.

bas2101
11-04-2009, 03:39 PM
My tenacity may indeed be the bazillionth hope that goes unanswered. Chances are it will be. But, until I know this for sure, I will not follow the advice of orthopedic surgeons, who in their minds, have already guaranteed that such hope goes unanswered.

Ballet Mom
11-04-2009, 03:56 PM
My tenacity may indeed be the bazillionth hope that goes unanswered. Chances are it will be. But, until I know this for sure, I will not follow the advice of orthopedic surgeons, who in their minds, have already guaranteed that such hope goes unanswered.


I don't know any of your daughter's Cobb angles at any times, but you can be proud of yourself that if in case your hope does goes unanswered, you gave your daughter many more years of growth prior to surgery, if that ever becomes necessary...and that's a good thing. Kudos to you. :)

Ballet Mom
11-04-2009, 04:05 PM
So much of what is written about alternative treatments... the persecution, the disbelief, etc. is directly mapable onto other issues in society that are known or suspected to be counterfactual. That should concern you that you are using a similarly constructed argument.

What we do know is that some alternative treatment modalities like Schroth and bracing have been around for several decades and STILL have no evidence of efficacy.

Evidence is the game of the realists. Faith is the game of the believers.

You really need to get off this faith/believer trip you're on. Get over it and move on with your life. You are truly insulting and I really don't understand why this forum continues to let you antagonize everyone with your harangues. I question why Linda allows it.

I'm sure your opinion on bracing is so much more evidence-based than Jean Dubousset, the eminent orthopedic surgeon, who sincerely believes bracing works.

concerned dad
11-04-2009, 04:21 PM
What we do know is that some alternative treatment modalities like Schroth and bracing have been around for several decades and STILL have no evidence of efficacy.



Interesting discussion (and so far, pretty civil)

Sharon, I’d like you to consider something. Your argument would ring truer if you were more careful with your use of the term “evidence”. I think if you substitute “proof” for “evidence” in what you are saying there may be more agreement (wouldn’t that be nice).

Evidence is something that contributes to knowledge about something.
Proof is evidence that is sufficient to demonstrate the certainty of something.

It seems to me that evidence for some claims are to be found often. Proof is more elusive.

Perhaps you are thinking of a different definition. I dunno.

mamandcrm
11-04-2009, 07:15 PM
I think your proof/evidence distinction is on the mark CD. We use that distinction in society all the time. We arrest people based on evidence. We convict them based on proof (using a standard of evidence--preponderance/clear and convincing, etc.). We see there is evidence that some treatment might help some malady. So we study it further looking to prove it so (or not). My decision to brace with the device we chose was based on personal conversations with the parents of several patients using the same device. The information they provided me is not to be found in a study. Yet it was evidence that the brace could remediate my daughter's curve given the right circumstances.

Pooka1
11-04-2009, 07:39 PM
CD,

I see that distinction between evidence and proof.

Two points:

1. I use evidence to be synonymous with proof because I am assuming when people say they have evidence it is actual evidence that constitutes a proof and not just a flawed observation. I have never distinguished between those two words in parlance.

2. My use of evidence to mean proof is obviously NOT the reason there is push back. There would be identical push back if I said there was no proof because some people here actually think there is proof certain experimental modalities work. Some people think the scientific literature is gospel and where proof of anything can be found. Some people think anecdotes from lay people constitute proof. There is no getting around that situation with a mere word change. You have to completely boot folks up on why the scientific method is the only game in town and how to rationally approach the scientific literature. Neither of these things is a small task it seems.

concerned dad
11-04-2009, 08:43 PM
CD,

I see that distinction between evidence and proof.

Two points:

1. I use evidence to be synonymous with proof because I am assuming when people say they have evidence it is actual evidence that constitutes a proof and not just a flawed observation. I have never distinguished between those two words in parlance.

There are different levels of evidence. From flawed observation, to empirical observation, to p=.0001 confidence of repeated observations (even then, we're still not sure).



2. My use of evidence to mean proof is obviously NOT the reason there is push back. There would be identical push back if I said there was no proof because some people here actually think there is proof certain experimental modalities work. Some people think the scientific literature is gospel and where proof of anything can be found. Some people think anecdotes from lay people constitute proof. There is no getting around that situation with a mere word change. You have to completely boot folks up on why the scientific method is the only game in town and how to rationally approach the scientific literature. Neither of these things is a small task it seems.

I think it might account for some of the pushback.
If someone feels they have evidence of something, lets say, for arguments sake, oh, - bracing efficacy; and you say there is "no evidence of efficacy"; well that can be interpreted as dismissive.
When I choose to brace my daughter, I did it on my perception of the strength of the evidence. I knew there was no proof. But for you to say there is no evidence to support my decision makes me feel like a fool.

I think it would be better to acknowledge the evidence (with associated strengths and weaknesses) and say that the evidence does not rise to the level of proof. As I understand it, that is your view. It just doesnt come across that way all the time. That is your view, isnt it?

Pooka1
11-04-2009, 08:53 PM
There are different levels of evidence. From flawed observation, to empirical observation, to p=.0001 confidence of repeated observations (even then, we're still not sure).

I most certainly do NOT call flawed observation any grade of evidence! It doesn't rise to the level of evidence nor does most other things commonly discussed here.


I think it might account for some of the pushback.
If someone feels they have evidence of something, lets say, for arguments sake, oh, - bracing efficacy; and you say there is "no evidence of efficacy"; well that can be interpreted as dismissive.
When I choose to brace my daughter, I did it on my perception of the strength of the evidence. I knew there was no proof. But for you to say there is no evidence to support my decision makes me feel like a fool.

That wasn't my intention. I use the two words synonymously. I do not think the literature holds "evidence" bracing works because of the studies are fatally flawed. No evidence of any caliber or stripe can come from a fatally flawed study except by pure chance.


I think it would be better to acknowledge the evidence (with associated strengths and weaknesses) and say that the evidence does not rise to the level of proof. As I understand it, that is your view. It just doesnt come across that way all the time. That is your view, isnt it?

That's my view. But I wouldn't call anything in the literature evidence because of the fatal flaws. Recall my professor's story about how his professor paged over the methods section of his draft, saw the controls were inadequate and threw the paper in the garbage in front of my professor. That made an impression on me believe you me. I am forever grateful he told me that story. Lesson learned.

concerned dad
11-04-2009, 09:14 PM
I most certainly do NOT call flawed observation any grade of evidence! It doesn't rise to the level of evidence nor does most other things commonly discussed here.



Well, we may have to agree to disagree on this. But it seems that by saying there is no evidence, you are lumping all existing evidence in with flawed observation. Take the Daniellson paper which follows up on the Nachemson trial as an example. It contains evidence of efficacy even though the original trial had flaws in the design. The evidence just doesnt rise to the level of proof - I dont think anyone has claimed it does.

Pooka1
11-05-2009, 05:57 AM
Well, we may have to agree to disagree on this. But it seems that by saying there is no evidence, you are lumping all existing evidence in with flawed observation. Take the Daniellson paper which follows up on the Nachemson trial as an example. It contains evidence of efficacy even though the original trial had flaws in the design.

I have qualified the term "evidence" at times by saying "there is some evidence" for a hypothesis or things like that. I do NOT use that to mean flawed evidence. I use that to mean that as far as we know, it isn't obviously bad but it is either too spotty or too out of line with the bulk of the other observations.

That Danish Twins study component dealing with scoliosis constitutes NO evidence for their conclusions for several reasons I have mentioned. It is known to be flawed on several counts (scoliosis rate doesn't match general population, known problems with self-identified zygosity, etc.) besides being out WAY out of line in terms of concordance with all other studies as far as I can tell. Just being out of line would not be a problem but in this case we know why it is out of line - GIGO.

Now that Danish Twins registry is probably used to get evidence for other things... things that can be verified and are not self reported with a known high error rate. But I am wary of any other study that uses the Danish Twins database now.


The evidence just doesnt rise to the level of proof - I dont think anyone has claimed it does.

I completely disagree with you that people here agree that there is no "proof" bracing works. People have claimed it and believe.

It is clearly not true that had I used "proof" instead of "evidence" that there would be no push back. Some people clearly do not understand the limitations of the literature (not just the bracing literature) and think it contains proof of efficacy.

bas2101
11-05-2009, 07:10 AM
"...you gave your daughter many more years of growth prior to surgery, if that ever becomes necessary...and that's a good thing"

Balletmom-This is exactly part of my thinking. My daughter has grown over 4 inches since I was told she absolutely HAD to have surgery right away, or else (that was 2 years ago). And, she is still growing. Since then, she is currently stable due to Cheneau/Scrhoth (To those who suggest she could have stabilized on her own-her curve was/is moderate-severe, Riser 0, grew over 4 inches during that time, 2 years ago the surgeon said "do not wait until summer to operate" b/c of progression, which at the time was only 5 months away). Her alignment and posture are also significantly improved, and her lung capacity, which is supposed to be reduced, is over 100%.

I will never regret waiting, even if she ends up with surgery. Since now is the crucial time to at least try not only to help her scoliosis, but also to do anything to figure out why she has it (I applaud DINGO on his search), I don't understand the big rush and all of the fear tactics that have been shoved in our faces for years (and yes, some were fear tactics-old outdated statistics about higher suicide rates-is this really something to shove at a parent when their child is 7? Give me a break). While scoliosis certainly makes life more difficult, in most cases, it is not an emergency. Her specialist in Spain takes a fearless, but not unrealistic approach-if she wants to get surgery when she is 18 or 20, then fine (she is 14). But, until then, let's see what can be done. And, yes, I find it ridiculous and pathetic that we have to travel to Spain to get treatment that we trust.

I am also using this time to try to figure out why she has pain, and ways to reduce it. There is no guarantee that fusion will remedy her pain (if a surgeon guarantees this, beware) and nothing scares me more than having her undergo fusion, only to continue to be in pain afterwards. She does not care much about how her back looks, and said she would have no problem living with a crooked back, so right now her image is not the problem. She does have a small syrinx, which according to the neuro can't be operated on. I am told this is not significant, but I am not convinced. They order MRI's for scoliosis patients to rule out syrinx, how can this not be significant? It runs T2-T10, right where the apex of her curve is. I will not stop searching until I have answers, or until either her curve progresses further, or she chooses surgery over our current treatment. For all any of us know, in waiting, the surgical techniques may be that much better in the near future.

I will never take the orthopedic surgeon's word at face value in regards to what approach we "should" take. I do not understand how or why it is allowable on this site for the monitor to shut down threads that offer alternative ways of thinking or advice even, while forum members can openly refer patients to orthopedic surgeons left and right. Parents are capable of making their own decisions regarding their children. No one here has to save them. Of the 4 orthopedic surgeons I went to, 3 made either blatantly large mistakes or blatantly incorrect predictions concerning my child's scoliosis. And, they are all considered very reputable, linked to major universities and hospitals. Sure, they may be correct in the end, but they are not correct right now. There would have been no problem for someone on this site to advise me to go to any one of them. Yet, god forbid if someone had referred me to Schroth or the specialist we see in Spain-all hell would have broken loose. Interesting since what we are doing now is the only treatment that has made any significant difference for my daughter (and we have tried many). I would give anything to have had a parent come to me with this information when my daughter was 7-and not have had to find it on my own years later.

I will post all of my daughter's statistics in the future. I do not want to post anything too prematurely. We still have a long road to go.

One thing I have learned in all of this, is to focus less on the numbers, and more on quality of life. That includes the interaction between patient and physician.

mamandcrm
11-05-2009, 08:41 AM
Thanks for posting bas2101. I agree that people are capable of making their own decisions and that walling off information that others have decided is unreliable is not right. (Point it out, if you like [once], then move on.) There may come a time when I want to know more about Schroth therapy for my daughter, and how it has worked for people, and I hope that I could find that information here, without having to hide behind PMs, which is what people on this site do who do not want to deal with remonstrations that they are ignorant, wrong or lying.

I'm sorry that you have had such bad experience with orthos here. I realize that, in addition to finding a treatment for my daughter that appears to be working, I also am fortunate to have a doctor who is not dismissive and will not "fire" me for raising topics and issues with which she does not agree.

I hope to hear more good things about how your daughter is doing in the future.

mariaf
11-05-2009, 10:36 AM
I'm sorry that you have had such bad experience with orthos here. I realize that, in addition to finding a treatment for my daughter that appears to be working, I also am fortunate to have a doctor who is not dismissive and will not "fire" me for raising topics and issues with which she does not agree.

You are fortunate indeed. I had exactly what you describe happen to me when I told our former ortho back in late 2003 that we were inquiring about VBS for our son. She dismissed the idea because she said it was too new (that was the worst thing she could find to say about it, btw). She never really put much stock into what parents said - she felt she was the doctor and that was that. And she pretty much did "fire" me for pursuing another option with another doctor - or maybe it would be more accurate to say we fired each other :)

Anyway, it was the best thing I could have done. Not only has VBS worked out well for my son so far, but it is so refreshing to deal with a doctor who does not have a big ego and who in fact actually WELCOMES a parent's thoughts when it comes to their child's treatment.

concerned dad
11-05-2009, 02:59 PM
Bas2101, you make a VERY compelling case.

In general, I may lean to towards the opposing view. But you have given me something to think about.

LindaRacine
11-05-2009, 08:29 PM
You really need to get off this faith/believer trip you're on. Get over it and move on with your life. You are truly insulting and I really don't understand why this forum continues to let you antagonize everyone with your harangues. I question why Linda allows it.

I'm sure your opinion on bracing is so much more evidence-based than Jean Dubousset, the eminent orthopedic surgeon, who sincerely believes bracing works.

Reading every post would be a full time job. If you want to report a post, please feel free to do so.

emarismom
11-06-2009, 05:09 AM
bas2101,

I just want to say that the way I deal with the question of who to see and who knows best how to treat my daugther is that I see several practitioners. Listen to all they have to say/offer. Then go from there. We have been on this road for over 5 years. I see her ortho every 4-6 months. I have her in a Spinecor so I see the Chiro that prescribed it every 3-5 months. I also see her neurosurgeon once a year to deal with the Chiari/Syrinx.

The orthopedic and Chiro have had very different views and opinions and even Cobb measurements over the years. I listen to it all and go from that point. The who decides in this is me, because none of them have all of the answers, especially when you are dealing with all of these issues.

emarismom
11-06-2009, 05:19 AM
BTW, I would definitely be looking more into the Syrinx. Have the MRI reviewed by another NS or two or even three. If it has been more than 6 months to a year since the previous, request another, as the Syrinx may be changing and this can and does lead to pain and a host of other symptoms.
Have they ruled out Chiari or tethered cord?

In my daughter's case her decompression surgery IS what stopped the progression of the scoliosis. BECAUSE the syrinxes are still present AND she is so young and still growing, I have chosen to brace her in the Spinecor.

visit asap.org to find out more on Syringomyelia.

Pooka1
11-06-2009, 05:46 AM
A question for the crowd using Spinecor...

If Spinecor was offered by both board certified experienced pediatric orthopedic surgeons and chiros (who can't use the "Dr." title in the UK), which one would you go to for the brace?

I think we all know the answer to that.

Chiros, being practically the only people in the US offering the brace, have a built in clientele that they would not otherwise have. That is "a" reason to go to a chiro at the moment.

Rivard/Coillard, orthopedic surgeons as far as I know, I'm sure never saw that coming and would love to change that. Unfortunately their pubs aren't changing any opinions within the pediatric orthopedic surgeon community. I'm reasonably sure though not certain that they didn't see that coming either.

If there is ANY other reason to take a growing child who doesn't have pain to a chiro, I don't know what it is. Perhaps someone can edify me on that.

bas2101
11-06-2009, 05:53 AM
Emarismom-

Thank you for your post. I am taking all of my daughter's MRI's to a neurologist, in a few weeks. If he does not feel the syrinx is an issue, then I will go to another. She does not have Chiari or tethered cord. I believe her syrinx was there when she was 7, at dx, because her MRI back then was questionable. The questionable part however, was dismissed to movement during the MRI. Yet, looking now at all 3 MRI's from over the years, it seems evident that the syrinx was there all along, which is why I am not convinced it isn't contributing to her scoliosis. The last neurologist suggested that her braced caused it-which while anything is possible, I find this statement ridiculous.

Like you, I have seen, and continue to see differing opinions. I weigh them all, but then make the final decisions, with my daughter's opinion part of this now that she is 14. I stopped going to the orthos however, because when we visit them, they find ways to belittle our choices, and have even told us that what we are doing is wrong. I cannot have my daughter hear this every time-it breaks her down, and makes her current efforts feel like they are for nothing. We have even had to switch pediatricians twice, because every time we went in for a cough/fever/whatever they would go on about my daughter's back. No kid need to hear this over and over again. We now see a scoliosis specialist who deals with hundreds, maybe even thousands of children with scoliosis every year-from all over the world. We trust him immensely and are are in good hands.

Good luck to you and your daughter

Brooke

mamandcrm
11-06-2009, 06:16 AM
Hi Brooke,

I was just curious, at this point what is it that the orthos here in the US that you have seen think you are doing wrong? Is it that your daughter is still at what they consider a surgical level and you are continuing to brace and do PT? Or is it that you are going outside the country and she is not being followed here? I can't see why any ortho would have a problem with her doing Schroth when she also is a Rigo-Cheneau brace full-time, unless it's still that they think she belongs in surgery.

bas2101
11-06-2009, 06:48 AM
At this point, they think she belongs in surgery. Her curve now is above the standard range. I don't blame them for their opinions (at least in regards to surgery), I blame them for not respecting ours. And, I resent that they are the gold standard for treatment, when they offer few choices. This is a disservice to many kids, and adults.

My dd was too young for fusion at 7, although her curve at that time was just barely within the surgical range. However, their lack of respect for our opinion was the same then. They suggested bracing her with a Boston brace for somewhere around 10 years, or growing rods-all while telling us the prognosis for both was not good, and that she would most likely have fusion in the end anyway. Since their options were clearly not good, in my opinion and in theirs, they should have had no reason to tell us at any time that our choices for treatment were "wrong."

We were not bracing with Cheneau or doing Schroth back then. We were doing everything else under the sun-things that they may have thought were ridiculous, but for us were at least something. I am not sure how they would have reacted to Cheneau/Schroth, but, I know parents who are not even telling their ortho that they are going about this treatment. Hence, the divide between doctor and patient, that serve neither well. Which at the end of the day, is my real issue:

Surgeon offers advice, patient is not in accordance with this advice and looks elsewhere, patient's opinion is disrespected by ortho, patient either continues "battling" with ortho, hides alternative treatment from ortho, or discontinues seeing ortho. Loss to all. I know this does not happen with everyone, but I know MANY whom it has, including us. I am not just speaking from my own experience, MANY parents have relayed this similar scenario to me. And, all are dismayed by it, because they do not necessarily know where to turn.

Luckily, I now I have a specialist who is not against surgery, but is not pro-surgery. A middle ground, who respects our decisions. And, someone who can monitor my dd's scoliosis. I do believe continuity is important, and bouncing all over town trying to find a specialist who can both monitor scoliosis, while respecting a patient's choices-even if they are not in accordance with that specialist, is key to me. Although, ultimately, I believe treatment should take an integrated approach, that includes orthos/specialist, neurologist, brace maker, PT , pediatrician, internist, geneticist, whomever. Scoliosis affects many systems of the body, so I hope that scoliosis treatment heads in this direction.

bas2101
11-06-2009, 06:55 AM
Mariaf-

I wish I had known about VBS when my daughter was 7, when she was a perfect candidate. But I had never heard of it until years later when her curve progressed past their criteria. In retrospect, I probably would have taken this route. It seems like a promising middle ground.

I really hope it works for you son.

Brooke

mamandcrm
11-06-2009, 10:51 AM
Do you go to Dr. Rigo's clinic in Barcelona? Feel free to PM me if that's better...

Ballet Mom
11-06-2009, 11:11 AM
There is obviously an unmet need here in the United States regarding scoliosis treatment. Chiros are stepping in to fill that gap, unfortunately, they are not medical doctors, even though they love to pop out the "doc" title every instance they can in order to win people's trust who may not know better. I don't wish to fly to Europe for treatment, and most people can't afford it, but I will never be or have any of my family under the "treatment" of a chiro, the misinformation that comes out of them never ceases to amaze me.

Therefore, I think the solution is that some doctors who are not orthopedic surgeons need to specialize their practice around conservative scoliosis treatment here in the United States, located within the general regions of the country. Any medical doctor could do it, perhaps family medicine, seeing as they are all trying to abandon their profession due to the hugely long hours and relatively low pay. The insurance companies should like it because they won't be needing to pay orthopedic surgeons at their phenomenally high rate of pay for reading an x-ray every four to six months. The surgeons can be left to do what they enjoy most, which is surgery.

The medical doctor with a scoliosis specialty would be able to learn the great techniques that the Europeans have developed and would actually support the parents in this lifelong treatment. They would be doctors who wouldn't have a problem with bracing kids and thinking what a terrible, horrible, thing to have to do to the poor fluffy bunnies. They would be able to monitor, and easily refer patients to an orthopedic surgeon if necessary and in discussion with the parents.

These MDs would also run their x-ray rooms with people who can actually follow the safety procedures for these scoli patients. It is unbelievable to me that the best children's hospitals and orthopedic surgeons can't even get an x-ray with the patient's back facing the machine. These scoliosis specialist MDs, because they were interested in it and not too busy running to the operating room, would make sure the safety guidelines were ensured.

It sounds like a total win-win to me!

Brooke, I take it that Dr. Rigo is not an orthopedic surgeon, but some other type of medical doctor?

mamandcrm
11-06-2009, 12:31 PM
Can't tell you how many battles I've had to fight in the x-ray room--even when the order specifically says PA and "must shield".

bas2101
11-06-2009, 12:31 PM
Balletmom-

I absolutely agree, and hope that scoliosis care heads in this direction- although there are some chiropractors whom I believe could play a part in treatment/therapy/pain reduction.

As far as x-rays, don't even get me started. My daughter has had some x-rays taken so inappropriately, it is beyond my comprehension-again, all at top hospitals. As in, the technician hasn't got a clue and fully zapped her. As, in, after thoroughly discussing breast/ovary coverage with the head of radiology, the technician covered her thighs as opposed to her ovaries. As, in her breasts were not covered because then "we won't see the curve." How hard is it to create small pads to put over the breast area? I have tried to become an expert in this area, despite not being one-and I probably know more about covering here than the people that do this every day.

Having to go to Spain for treatment is not practical or economical (unless you have no insurance-then going, staying, and getting a brace will probably cost you less than getting it here. This is not my reason for going however). Dr. Rigo is an MD.

concerned dad
11-06-2009, 02:05 PM
Chiros, being practically the only people in the US offering the brace, have a built in clientele that they would not otherwise have. That is "a" reason to go to a chiro at the moment.


I agree.
Once you have a diagnosis and a qualified orthopaedic doctor has ruled out other issues and says the child is an appropriate candidate for bracing, and, if bracing with the SpineCor is the route you decide to go, then I think it reasonable to consider going to the Chiro's in the states that offer it.

I suspect that some may have more experience than the inventors.

But, I also suspect you might be offered or encouraged to incorporate some additional, perhaps more questionable, treatments such as vestibular testing. You can always decline those if you dont feel they are appropriate and likely still get a brace correctly fit.

But, you're right. Given the choice, most would probably opt for an orthopaedic doctor. Unfortunately, here in the states, that choice is severely limited.

I do find it irritating and misleading that they go by the title "Dr". I suspect a few people erroneously give that title the same weight as a MD. But that is the convention here. We cant blame an individual Chiro for that and I suspect the good ones are ethical and would refer a patient to a MD if they suspect the situation warrants.

Pooka1
11-06-2009, 02:15 PM
And, I resent that they [surgeons] are the gold standard for treatment, when they offer few choices. This is a disservice to many kids, and adults.

This is very unfair. You are asking surgeons to get to blood from a stone and then blaming them for not doing it.

Either there are viable, effective non-surgical choices or there aren't. You seem to be claiming there are all these wonderful effective conservative choices out there but surgeons are withholding them from patients for, what reason? Because they are evil? Because they are too dumb to know an effective conservative treatment when they see one?

If they are withholding conservative treatments it's because they haven't seen evidence of efficacy and are unwilling to experiment on kids outside of a controlled study.

You mentioned you don't want to post your daughter's curve measurements and dates until you have more data (or something... I forget). That's fine but I suggest the people here who are interested in the alternative treatments you tried would like to see those numbers. Can you post them? Have you found an alternative treatment that worked to slow the curve? You mention your tried many so that suggests that all but the last one that you are trying now did not work. Is that correct? If true, you should post so others coming along will know.

emarismom
11-06-2009, 03:22 PM
bas2101,

Good luck with the nuerologist. There is a known connection between syrinx and scoliosis. The exact mechanisms of this connection are unknown at this time. When a syrinx is present- scoliosis progression is usually very rapid. I suspect this may have been the situation with your daughter. I find it strange that the orthopedics disregarded the syrinx. Immediately upon seeing my daughter's large curve at such a young age, we were sent for an MRI. Then no orthopedic would touch her until we dealt with the Chiari/Syrinx. This is the protocol as far as I know it.

As far as using a chiro- I initially struggled greatly with this idea. In fact, I planned on going to Montreal. But as life would have it, this particular person was training someone within 5 miles of my home. I saw him, heard what he said. Watched and waited a while longer then decided to try it. There are now chiros closer to me that I could use, but I don't. Instead I travel to see this person because he does have extensive experience using the Spinecor brace. He only braces my daughter. There are no adjustments of any kind. There is no vestibular testing or anything else. These were the conditions that I decided on -having an understanding of ALL of her conditions- not just the scoli.

I have no "proof" nor "evidence" that any of this will work. Up to this point it is causing her no harm. I asked her today if she could get rid of the brace today, would she? Her response was, "I really don't care." This makes it worth a try. If it were harming her in anyway, affecting her self esteem, making her uncomfortable, then I am sure I would have given up by now.

bas2101
11-06-2009, 03:39 PM
Pooka1-

I am not sure I am blaming them for what they lack, but if you would like to call it blame, then fine. I resent that they are the standard for scoliosis treatment, and that they do not vigorously focus on prevention. And, when a patient takes their own care into their own hands, they dismiss that patient's ability to make their own choices (many of them at least).

How many of them are focusing on moving beyond watching/waiting, bracing, and surgery as options? How many are looking at etiology, beyond ordering an MRI, which only tells a fraction of possible causes? How many are looking at genetic factors, aside from the visibly obvious? Why will one parent hear about VBS and another doesn't? Why did your surgeon spot possible under-lying Marfan's and I had to hear it from a PT? Why offer bracing when bracing is not always proven effective? Is this not experimenting? Why experiment here and not with exercise or PT? Do I think they are evil? Do I think they are purposely withholding information? No. But, they can be ignorant. And, in my opinion, they do not explore the many facets of this disorder that they should be exploring if they are going to hold the throne for treatment.

Do honestly think that most of them are aggressively attempting to further the preventative knowledge base, except for maybe trying to figure out if bracing works or not (even this I doubt is an aggressive effort), and improving surgical techniques? I doubt it. But, then I wouldn't want my surgeon focusing on this either, I would want them improving their surgical skills. Which again, is why I do not think they should be the standard in scoliosis care, until a patient chooses surgery.

I never once claimed there are a whole bunch of great options out there. Quite the opposite-I know from trying many of them that they don't work-or rather, they did not work for my daughter. While I can not say whether or not any of our past treatments slowed my daughter's curve (I will never know this), I know they did not stop it. I will not outright name the long list of everything we have tried, because for some people, these treatments have helped in one way or another. And, for us, many of the practitioners we sought were invaluable to us in other ways. No practitioner we ever got treatment from ever guaranteed they could reduce my daughter's curve. Never, once.

As far as my daughter's current treatment, I will post her numbers after her x-ray next Tuesday. You can make your own opinion at that point. If she has progressed, I will be concerned and re-think our approach. But, I will not regret our treatment, or claim it is ineffective for everyone. Even if she has progressed, her alignment, posture, and lung capacity have all improved-do Cobb angle numbers wipe all of this out? Our choice of treatment has helped other kids to reduce their curves. Why is there no documentation of this? I don't know. It is a disservice. But, these parents have x-rays to prove it. Hopefully, their evidence will come out.

bas2101
11-06-2009, 03:52 PM
emarismom-

The ortho did not dismiss the syrinx, the neuro who was handling it did. The ortho ordered the MRI, and then sent us to a neuro who felt it was insignificant.

I have also have no proof, at least in my hands, except what I know of other kids who have been helped by our current treatment. Nothing we were offered by the orthos was proof either-no proof that a Boston brace would work, no proof that surgery will take away her pain, or not cause other pains, or not need to be revised in the future.

Like you, I don't see the harm in at least trying. I always ask my daughter how she feels about her current treatment. As far as bracing, it is hard, but she has found ways to wear it without it showing at all. Physically, the brace does not bother her at all. Schroth is hard to keep up, but for some kids, it is no big deal, and they do it every day without a problem. If she tells me she is done with all of this, then I will respect that and move on to other pastures.

Pooka1
11-06-2009, 05:23 PM
Pooka1-

I am not sure I am blaming them for what they lack, but if you would like to call it blame, then fine. I resent that they are the standard for scoliosis treatment, and that they do not vigorously focus on prevention. And, when a patient takes their own care into their own hands, they dismiss that patient's ability to make their own choices (many of them at least).

Well you are paying for their expertise. If you don't want it then you shouldn't go to a surgeon. (But you open yourself up to possible withholding treatment charges though.) They are simply trying to give you your money's worth. I realize you don't view it that way but as an outside person reading your testimonial, that's how it seems to me. Had they not done that you could have reported them for malpractice (whether you see it that way or not). So maybe they are doing a CYA - covering their bases. Either way, I don't see that the surgeons you dealt with had any latitude to act differently. (N.B. The EPO thing, if reported accurately, is outrageous in my opinion. I think at some point you would have had to sign a waiver that you were participating in a study so I doubt you never would have know the experimental nature, though.)



How many of them are focusing on moving beyond watching/waiting, bracing, and surgery as options? How many are looking at etiology, beyond ordering an MRI, which only tells a fraction of possible causes? How many are looking at genetic factors, aside from the visibly obvious? Why will one parent hear about VBS and another doesn't?

Aside from VBS, you are asking them to step outside their specialty and into biochemistry, neurology, medical genetics, etc. People get PhDs in these subjects and do years of research to know what the heck they are talking about (aside from Dingo who thinks he is picking this up in his spare time with no training whatsoever). I wouldn't go to a surgeon who seemingly had the time to have more than one specialty but that's just the kind of hairpin I am. :)


Why did your surgeon spot possible under-lying Marfan's and I had to hear it from a PT?

Actually, he never mentioned Marfan's. I mentioned it and asked what he thought. The pediatrician also never mentioned it. I mentioned it and asked what she thought. I had to mention it to her as I needed a referral to a pediatric cardiac surgeon and a geneticist because I figured out that they might have Marfan's, not that this requires any great skill... anyone who can read a list of signs/symptoms and has a kid with scoliosis and certain other signs/symptoms could figure out that Marfan's might be something that needs to be ruled in/out.


Why offer bracing when bracing is not always proven effective?

I think surgeon's do this because of a combination of the following:

1. it is the standard of treatment despite having no good evidence of efficacy,

2. they are hopeful it might work and certainly nobody has shown it can't work under the right circumstances, and

3. some parents simply will not watch and wait even though watching and waiting isn't obviously worse than bracing or PT for permanent curve halting or regression.


Is this not experimenting?

It is not experimenting when it isn't done within the context of a controlled study. It is just scattershot usage.


Why experiment here and not with exercise or PT?

That's a reasonable question. I think its because orthotics has traditionally been the game of orthopedic surgeons moreso than PT but I don't really have a good answer.


Do I think they are evil? Do I think they are purposely withholding information? No. But, they can be ignorant. And, in my opinion, they do not explore the many facets of this disorder that they should be exploring if they are going to hold the throne for treatment.

All you have to do is walk in there with a bunch of controlled clinical trials for these other treatments. That would cure their ignorance. Of course like the ped. neurosurgeon Samdani in that torso rotation video, he is familiar with what has and has not been published in the PT field which is precisely what drives his skepticism. It's what drives everybody's skepticism.


Do honestly think that most of them are aggressively attempting to further the preventative knowledge base, except for maybe trying to figure out if bracing works or not (even this I doubt is an aggressive effort), and improving surgical techniques? I doubt it. But, then I wouldn't want my surgeon focusing on this either, I would want them improving their surgical skills. Which again, is why I do not think they should be the standard in scoliosis care, until a patient chooses surgery.

Who should be the gold standard then?


I never once claimed there are a whole bunch of great options out there.

Well that's how it read. Apparently I misunderstood you. Apologies

bas2101
11-06-2009, 06:08 PM
Yes, I was paying for their expertise, but this was in the beginning, years ago when I knew of no one else to go to. When I returned years later, I went precisely because I feared my daughter was well within surgical territory, which she was.

I assume the ortho would have had to legally have us sign something in regards to the EPO use, but was he planning on this on the day of surgery? Could he not have told us this when I inquired about it beforehand?

I am actually not asking them to step outside of their specialty, I wish they would step outside of their role as the standard for scoliosis treatment-aside from surgery of course.

I didn't mean to insinuate that I have an issue with bracing just because it is not "proven." I actually am for it, in the sense that my daughter is braced. I do however believe there has to be a better way. I merely mentioned it as a point on experimentation.

I suppose anyone could walk in with a bunch of controlled clinical studies that prove something, but are these surgeons just waiting around for them? How many of them are driving the search? Again, this is why I don't think they should be the standard.


The gold standard? I mentioned earlier in the thread, that scoliosis should treated with an integrated approach between many physicians, including the surgeon, if need be. Since scoliois affects many systems of the body-nervous, skeletal, muscular, immune, respiratory, endocrine (potentially), and also connective tissue, lungs, heart, genes, and so on, there should as many specialists, treating a patient in tandem. Including orthorist & PT if need be. Perhaps this sounds crazy, but in not approaching it this way-that to me is crazy. Why over look something, especially since scoliosis can be caused by, and cause many different problems? Doesn't it bother you that you had to address the Marfan's yourself? While the signs may have been obvious to you, they are not obvious to every one else. It bothers me that I have had to search out several doctors on my own with mostly my own research; cardiologist, optometrist, rheumatologist (just in case), geneticist (this is next), endocrinologist (potentially next) and the numerous other therapists we have been. I at least have a pediatrician who knows my aim. A one-stop shop for scoliosis would be nice. I do not think it is too much to ask for, considering what our kids, and us as parents, have to go through will all of this.

In the meanwhile, I do not think the orthos should be filling this gap-they are too specialized in one area. If anything, they should be begging for an integrated approach, considering what they don't know. Who should? I don't know.

Pooka1
11-06-2009, 06:22 PM
Doesn't it bother you that you had to address the Marfan's yourself? While the signs may have been obvious to you, they are not obvious to every one else.

Not after I heard the reason they didn't mention it. Despite my laundry list, neither the pediatrician nor our surgeon thought they have Marfans. That is a reason they would not mention it. ETA: It wasn't that they just didn't notice... I brought the symptoms to their attention and they still didn't think my kids had it.

On the other hand, the ped. cardiologist felt they had enough indicators to warrant aortic imaging every other year. And the metabolic geneticist felt they had enough indicators to warrant aortic monitoring every year. I am splitting the difference and doing it every 1.5 years. :)

They do not now meet the diagnostic criteria but emergent Marfans can happen at any age per the geneticist. So unless my kids develop the requisite constellation of indicators or unless the medical researchers develop a genetic test with a zero false negative rate, my kids have to get the aortic imaging the rest of their life. Could be worse... I'm not complaining.

mariaf
11-06-2009, 08:56 PM
Mariaf-

I wish I had known about VBS when my daughter was 7, when she was a perfect candidate. But I had never heard of it until years later when her curve progressed past their criteria. In retrospect, I probably would have taken this route. It seems like a promising middle ground.

I really hope it works for you son.

Brooke

Thanks, Brooke!

Your post really hit home for me. It's because of people like you that a few of us moms started another website/forum to share our information and experiences regarding VBS - because, while it is not the best option for everyone, there are certain children that are, as you say, perfect candidates - and for some of them VBS can possibly spare them years of full time bracing and possibly prevent them from needing fusion.

I wish you and your daughter all the best as well! Regardless of the treatment method, or whether or not one needs fusion, the bright spot is that these kids will all go on to live full, happy lives :)

bas2101
11-07-2009, 09:40 AM
Maria-

Thank you for getting the VBS info out there. Even though my daughter is no longer a candidate, she would have been. And, the procedure was around when she was dx, only no one mentioned it to us. I don't expect that the doctors should have recommend it against their better judgment, but they could have at least mentioned it as treatment that was currently being used for scoliosis. I assume they knew it was being used. Then, we at least would of had the option to look into it further. And, would potentially not be in the position we are in today.

Brooke

mamamax
11-07-2009, 10:13 AM
Bas2101 - hdugger - Ballet Mom - mamandcrm - Writer - CD - emarismom - emarismom - mariaf & others ...

This is one amazing thread for so many reasons, on so many levels - I hope there are many folks in positions of authority reading it (meaning, those who are in a professional position to effect change). The initial proposed question: who gets to decide? I guess the answer is - we do. Fortunately parents today have more tools available to them in making decisions than my parents did 47 years ago. And on a more personal level as a patient, I certainly have more choices available to me than I did 35 years ago as a young adult.

While change has been slow in terms of one lifetime - change has certainly occurred.

Today at 60, I've finally found a treatment that manages my condition. My DO (whose practice bty, includes a well respected surgeon that I've consulted with and who is mentioned throughout this board in the past), is now referring patients like myself (older adults declining surgery) to the practitioner I currently see. That is precisely how change has occurred - one patient at a time. To be the age that I am, and to be able to see the change that has occurred in a relatively short period of time, given the long history of the condition - gives me more than hope for the future. I only wish I could be as articulate as those of you in this thread who help spell out both the challenges and the successes you have seen and experienced. Maybe if I hang around long enough some of it will rub off - which would be good because at the end of the day, it is the shared experience and communication of it - that will continue to make a difference into the future. There have been a few I call hero in this journey of mine ... I would be remiss not to count you among them. So pardon me while I have a sentimental moment - it is because of folks like you that change has occurred - thank you, is too small a sentiment.

bas2101
11-07-2009, 05:01 PM
mamamax-

Your posted experiences and the subsequent closing of two of your threads, is what triggered me to post this thread. I just couldn't understand the justification for it. It was one small example of a much larger imbalanced picture. I look forward to reading more about how your treatment goes for you, and how it may help others.

Brooke

Pooka1
11-07-2009, 06:05 PM
It seems to me that if there is ever to be headway on scoliosis etiology and prevention, it will come from the molecular guys as is the case for most other conditions.

Surgeons are NOT molecular guys. They are trained, exquisitely I might add, in the only treatment that has any good track record. That is not their fault. They bear no blame. Surgeons are being unfairly gigged for something that is in no way their fault nor are they somehow falling down on they job nor are they lacking in foresight or anything along these lines.

I have heard mention of non-western medicine. Does anyone really think the answer lies there as opposed to with the molecular guys? Non-western medicine has been around a long time and they clearly haven't produced a damn thing to treat scoliosis other than with things like acupuncture for pain which has been shown to be effective in narrowly defined circumstances.

I think there is a problem with folks toiling under a perceived problem that is really a category error.

bas2101
11-08-2009, 10:13 AM
I never insinuated that they are falling down on their job as surgeons (at least not all of them), clearly they are the only people most of us would go to if we chose scoliosis surgery for ourselves or for our children. Although, I certainly disagree that they have the "only treatment that has any good track record." Whose track are we talking about? Theirs? What is the definition of this track? What does this track record mean when a patient refuses surgery (for whatever reason)? There are many people who choose to skip this track, so in their cases, this record means nothing.

Which is why I believe that they are falling down on their job as the throne holders of standard care for ALL scoliosis treatment. It may not be their fault that they became the standard in both surgical and preventive care. But in my opinion, it is their responsibility to recognize both to themselves and to their patients, that they do not focus enough on prevention, and they do not know all of the answers that currently MAY exist in preventative care. Therefor, they should step down from this arena, or at least be willing to share it.

This would stop new patients (and old) from thinking surgeons have all of the answers, or at least, all of the answers that may exist. It would open the doors sooner than later, for patients to explore other options, when what they are presented with does not comply with choices they would make for themselves or their children. Including options that DO exist.

What right does a surgeon have in saying to a patient, "Oh, yoga-you can try it, but it doesn't work." How so? Or, "What you are doing is wrong" How so? My daughter is in pain. How is a surgeon the best person to address this, when NOT ONE can guarantee that fusion will eliminate her pain, or create new pain? There is much more to consider here than a track record that is able to reduce Cobb angles-much more. If my daughter's curve progresses and her lung function decreases, how many of them will guarantee that they can improve this? NONE. What is their track record for this? How many will guarantee that she will not need revision in the future? NONE. What is their track record for this? I am not trying to detract from what they have done to improve the lives of many scoliosis patients, I am merely trying to show that their "track record" does not mean the same thing to everyone.

Orthopedic surgeons may be victims of categorical error, but I am sure that they are not so stupid as to not recognize this (ignorant maybe). Surgeons know that they are the standard for preventive care of scoliosis in the US. How many of them are rallying for better scoliosis prevention? I would really like to know. Where they can't fulfill the category, then they should admit it and get out.

Ballet Mom
11-08-2009, 11:20 AM
I agree.
Once you have a diagnosis and a qualified orthopaedic doctor has ruled out other issues and says the child is an appropriate candidate for bracing, and, if bracing with the SpineCor is the route you decide to go, then I think it reasonable to consider going to the Chiro's in the states that offer it.

I suspect that some may have more experience than the inventors.

But, I also suspect you might be offered or encouraged to incorporate some additional, perhaps more questionable, treatments such as vestibular testing. You can always decline those if you dont feel they are appropriate and likely still get a brace correctly fit.

But, you're right. Given the choice, most would probably opt for an orthopaedic doctor. Unfortunately, here in the states, that choice is severely limited.

I do find it irritating and misleading that they go by the title "Dr". I suspect a few people erroneously give that title the same weight as a MD. But that is the convention here. We cant blame an individual Chiro for that and I suspect the good ones are ethical and would refer a patient to a MD if they suspect the situation warrants.

I don't think you should suspect that chiros would refer a patient if the situation warrants it. There may be some ethical chiros, but there are a heck of a lot of that appear not to be, and who would be able to tell...they are very good salesmen.

If an MD specialized their practice in conservative scoliosis techniques, they might very well be able to use the Spinecor for curves in young kids prior to their major growth spurt and then switch to a more robust brace at the appropriate time. A chiro would obviously not be able to switch braces because somehow he has been given the ability to prescribe Spinecor braces, but he still would not be able to prescribe any others. They are a one-trick pony.

I have a ballet friend who took her daughter to a chiro and she came back beaming that her chiro's kids had not been vaccinated at all and she was not going to get any more vacinations for her kids because they are so dangerous. Great help the chiros are for medicine.

Pooka1
11-08-2009, 12:30 PM
I never insinuated that they are falling down on their job as surgeons (at least not all of them), clearly they are the only people most of us would go to if we chose scoliosis surgery for ourselves or for our children. Although, I certainly disagree that they have the "only treatment that has any good track record."

Okay please list the other treatments with track records as good.
1. ...
2. ...
3. ...


Whose track are we talking about? Theirs?

The universe of track records. Compare anything you like to surgery. How does it stack up? I think you are back to the blood from a stone difficulty.


What is the definition of this track? What does this track record mean when a patient refuses surgery (for whatever reason)? There are many people who choose to skip this track, so in their cases, this record means nothing.

There are people who choose to skip blood transfusions and cancer treatments for their children also. When they do, they tend to be over-ridden by a judge or they might go to jail if the kid dies. Track records of blood transfusions and cancer treatments mean something just like the track record of fusion surgery means something. Agree or disagree?


Which is why I believe that they are falling down on their job as the throne holders of standard care for ALL scoliosis treatment. It may not be their fault that they became the standard in both surgical and preventive care. But in my opinion, it is their responsibility to recognize both to themselves and to their patients, that they do not focus enough on prevention, and they do not know all of the answers that currently MAY exist in preventative care. Therefor, they should step down from this arena, or at least be willing to share it.

I don't know why you say this. There are top surgeons who do focus on bracing research, VBS, tethering, VEPTR etc..

I think you are flat out wrong when you imply they claim to have all the answers possible. Nobody has all the answers possible and that is beyond obvious... not sure why you need to be told that by anyone including surgeons. This is just another way to say you wish the research was further along. Well let me tell you parents of kids with EVERY condition wish the research was further along. My mother wishes every day the Type I diabetes research was further along. But she doesn't blame the doctor! How is that even rational?

And who should should surgeons share it with, the wacky chiros? (pardon that redundancy)

If they step down there will be nobody steering the ship.


This would stop new patients (and old) from thinking surgeons have all of the answers, or at least, all of the answers that may exist.

Wait a minute. You are complaining that you missed some obvious, inescapable point that you can learn after about 10 minutes of reading? How can you possibly blame the surgeons for that? :eek:

This is really just another way of pointing out that you wish there was an effective conservative treatment. Most of your statements are of this type, actually. That is NOT the fault of the surgeons.


It would open the doors sooner than later, for patients to explore other options, when what they are presented with does not comply with choices they would make for themselves or their children. Including options that DO exist.

You were always free to explore other options. You explored these options that "DO" exist. How have they done? Anything effective yet? Can you post what you tried and what the Cobb angles did in response? That would help parents who want to try these alternative methods.

You seem to think you must automatically have choices. You seem to assume there MUST be effective conservative treatments because... er... because you want there to be effective conservative treatments. Do I have that right? If that isn't your point then I have no idea what your point is.


What right does a surgeon have in saying to a patient, "Oh, yoga-you can try it, but it doesn't work."

Well I assume if a surgeon told you that it is because they know there have been no studied published to date that show it is effective at permanently halting or reversing a curve. That is either true or false. If it is true then the surgeon SHOULD tell you that. I am totally NOT understanding any of your points here apparently. This is the blood from a stone thing again.


How so?

How so? Either there is evidence of efficacy or there isn't. This isn't rocket science.


Or, "What you are doing is wrong" How so? My daughter is in pain. How is a surgeon the best person to address this, when NOT ONE can guarantee that fusion will eliminate her pain, or create new pain? There is much more to consider here than a track record that is able to reduce Cobb angles-much more.


You don't need to be a surgeon to KNOW there is no guarantee that fusion will reduce or remove pain though it does so in most cases as far as I know. If you tell me a surgeon told you fusion would guarantee pain relief I will question your recollection and understanding of the conversation. Sorry.

Again, you are looking for guarantees that NOBODY can give you, not surgeons and not conservative treatment purveyors. Blood from a stone.


If my daughter's curve progresses and her lung function decreases, how many of them will guarantee that they can improve this? NONE. What is their track record for this?

I think they can tell you that if you get fusion before you get to that point and get a good fusion, both likely in kids, you will not ever need to deal with reduced lung capacity. Waiting until it gets that bad and then blaming the surgeon for possibly not fixing it 100% is unfair in the EXTREME when you could have gotten the surgery earlier and COMPLETELY AVOIDED the issue of reduced lung capacity. I think you know this but aren't acknowledging it for some reason. You manufactured this issue... no involvement necessary from the surgeon.


How many will guarantee that she will not need revision in the future? NONE. What is their track record for this? I am not trying to detract from what they have done to improve the lives of many scoliosis patients, I am merely trying to show that their "track record" does not mean the same thing to everyone.

Again, blood from a stone. Certain fusions are not expected to need revision. There are no guarantees in life. ETA: You need to also acknowledge the possibility that fusion + revision might STILL be the only and therefore best game in town for some kids. Just because that blows your mind doesn't mean it can't be the case. Reality bites.

Their track record is FAR better than you seem to want or be able to acknowledge.


Orthopedic surgeons may be victims of categorical error, but I am sure that they are not so stupid as to not recognize this (ignorant maybe). Surgeons know that they are the standard for preventive care of scoliosis in the US. How many of them are rallying for better scoliosis prevention? I would really like to know. Where they can't fulfill the category, then they should admit it and get out.

There are surgeons who are researching preventative care. I think the MD/PhD types have the best chance of cracking this nut. Just my opinion.

Last, I have said this to you before... your bias is obvious in every word you write. You are batting 1000 for having a bad experience with FOUR different orthopedic surgeons. I think you should consider the one constant in that... your approach, might be the reason. It strains credulity to suggest all four of those guys were unreasonable AT ALL.

Just consider that for your own sake. I mean I think you have reasons for what you think but I haven't seen any that rise to the level of excuses. If you could just vet your comments against the "blood from a stone" standard I think you will see what I mean. And try to be fair.

Just some advice for what it's worth.

Good luck.

concerned dad
11-08-2009, 12:38 PM
I don't think you should suspect that chiros would refer a patient if the situation warrants it. There may be some ethical chiros, but there are a heck of a lot of that appear not to be, and who would be able to tell...they are very good salesmen..

Similar to my criticism of Sharons use of the words Evidence and Proof, I guess I take issue with your use of the word "suspect". I have every reason to suspect that someone who dedicates their life to (alternative) treatments of children would recognize and act appropriately if they saw a curve progressing that their treatment couldnt address. Statistically, 10-20% of braced kids (including the SpineCor as noted in Coillards papers) progress to surgery. These guys must have failures, and 1 in 10 or 1 in 5 is enough such that if they were ignoring it, I think we would have heard about it.

Maybe Mamamax can ask at her next appointment if the folks she sees ever or routinely refer kids to surgery.


A chiro would obviously not be able to switch braces because somehow he has been given the ability to prescribe Spinecor braces, but he still would not be able to prescribe any others. They are a one-trick pony.

Interesting and valid point. I wonder what authority allows them to use the SpineCor and not other braces. I suspect that they can indeed use other braces. Wasnt Copes a (now discredited) Chiropractor who used a brace he developed? But is seems pretty apparent that your observation of a one trick pony is effectively correct - the Copes Brace is the only other brace I've heard chiropractors utilize.


I have a ballet friend who took her daughter to a chiro and she came back beaming that her chiro's kids had not been vaccinated at all and she was not going to get any more vacinations for her kids because they are so dangerous. Great help the chiros are for medicine.

People have some pretty strong feelings about this. Many parents of autistic kids blame childhood vaccines for the affliction. I know studies have shown these claims to be unfounded but they persist (maybe they read Sharon's "Most published research is false" paper). Personally, I choose to get my kids vaccinated because it seems the benefit far out weighs the risk. But everyone agrees there is some risk (the degree of the risk is the question). I'd like to think everyone should be able to make their own decisions on this but, if you tie in the "public risk" aspect of skipping vaccinations then the personal choice aspect becomes questionable.

Pooka1
11-08-2009, 12:59 PM
People have some pretty strong feelings about this. Many parents of autistic kids blame childhood vaccines for the affliction. I know studies have shown these claims to be unfounded but they persist (maybe they read Sharon's "Most published research is false" paper).


No you don't need any text. You plot the number of autism cases and put a star on the year that EtHg was removed from all childhood vaccines and then watch the data continue to climb. They would have to posit a conspiracy of unimaginable proportions, larger than the Trilateral Commission, to explain the graph. :)

The people who claim an autism MMR connection are simply ignorant of the facts FULL STOP.

concerned dad
11-08-2009, 01:18 PM
Okay please list the other treatments with track records as good.


Sharon, she didnt say "as good", she said "any good".

The only proof you (or I) would accept is from a gold standard RCT.
However, I weigh the evidence from prospective and retrospective studies. You dismiss this evidence because it lacks a control group. I dismiss it only as evidence sufficient to establish proof.

We do not have proof that Schroth doesnt work. We dont have proof that Clear doesnt work. For Schroth, it seems to me the evidence you cite prooving it doesnt work is the fact that its been around so long, proof should be established by now. For me, I see that only as evidence it doesnt work.

You often point to the fact that the very existence of the Braist Trial demonstrates we do not know that bracing works. I would submit that the following is also true: The very existence of the Braist Trial demonstrates that we do not know that it doesnt work.

The point of this thread is "Who Decides". I think the unwritten text is "Who decides what can be explored and discussed on this forum" regarding alternative treatments.

It seems to me that as long as an alternative treatment is discussed in the context of how it worked for an indivudual case and not "you should try this because I have proof it works" it should be allowed, even encouraged.
(Untill such time as we have proof something doesnt work - as we have from the Nachemson study and electrical stimulation therapy)

I would like to think that you agree with what I say here.

Pooka1
11-08-2009, 01:24 PM
I would like to think that you agree with what I say here.

I agree with what you wrote other than you seem to say I don't acknowledge that bracing might be proven to work. That it hasn't been shown to fail every time.

I have acknowledged this several times, even in this thread IIRC.

Ballet Mom
11-08-2009, 01:31 PM
Similar to my criticism of Sharons use of the words Evidence and Proof, I guess I take issue with your use of the word "suspect". I have every reason to suspect that someone who dedicates their life to (alternative) treatments of children would recognize and act appropriately if they saw a curve progressing that their treatment couldnt address.

Alright, you can suspect that, but you have no proof (and perhaps no evidence either) :) I can similarly suspect that many of them will not. Heh.



Statistically, 10-20% of braced kids (including the SpineCor as noted in Coillards papers) progress to surgery. These guys must have failures, and 1 in 10 or 1 in 5 is enough such that if they were ignoring it, I think we would have heard about it.

Why would we have heard about it?



Maybe Mamamax can ask at her next appointment if the folks she sees ever or routinely refer kids to surgery.

That would prove nothing.



People have some pretty strong feelings about this. Many parents of autistic kids blame childhood vaccines for the affliction. I know studies have shown these claims to be unfounded but they persist (maybe they read Sharon's "Most published research is false" paper). Personally, I choose to get my kids vaccinated because it seems the benefit far out weighs the risk. But everyone agrees there is some risk (the degree of the risk is the question). I'd like to think everyone should be able to make their own decisions on this but, if you tie in the "public risk" aspect of skipping vaccinations then the personal choice aspect becomes questionable.[/

I agree with Sharon here. These people who don't vaccinate, and they are becoming more and more numerous, are riding on the benefits that those of us who take the risks with our children to vaccinate them, are giving them. If enough of them don't vaccinate, those benefits will quickly stop and they will, unfortunately, learn the old-fashioned way the benefits of vaccination.

I always wonder why things such as illegal drug use isn't blamed for the increase in autism. Why don't they blame that, seeing as recreational drug use keeps increasing and so does the incidence of autism? It seems just as likely. Why is it always medicine to blame, which has saved untold numbers of lives, versus they themselves introducing substances into their bodies that may have untold numbers of detrimental affects? It never ceases to amaze me.

Pooka1
11-08-2009, 01:36 PM
I agree with everything in Ballet mom's post above, especially the points about (most) chiros. :eek: :)

There is a reason chiros have the reputation they have. It's the same reason that Chirobase website is so chock full, bursting at the seams, of material.

Ballet Mom
11-08-2009, 01:43 PM
A rare thing....

i agree with everything in ballet mom's post above, especially the points about (most) chiros. :eek: :)


lol! :) .

concerned dad
11-08-2009, 01:52 PM
That would prove nothing.



True, but it would be some evidence :D


I always wonder why things such as illegal drug use isn't blamed for the increase in autism. Why don't they blame that, seeing as recreational drug use keeps increasing and so does the incidence of autism? It seems just as likely. Why is it always medicine to blame, which has saved untold numbers of lives, versus they themselves introducing substances into their bodies that may have untold numbers of detrimental affects? It never ceases to amaze me.

I think it much more likely (still highly unlikely) that it is the vaccines than illegal drug use. I think it would have been apparent by now if it were illegal drug use (because not everyone has used illigal drugs however virtually everyone vaccinates their kids). (It would have dawned on someone at one of their conventions as all the parents were out in the parking lot twisting up doobies. Although, I suppose it could have been missed (Thats why they call it dope):D

And Sharon, I didnt mean to imply you felt that way about bracing, although re-reading it that is the way it comes across.

Regarding the whole proof and evidence thing - consider the emergency use authorization given to Peramivir. Check out the information sheet (http://www.cdc.gov/h1n1flu/eua/Final%20HCP%20Fact%20sheet%20Peramivir%20IV_CDC.pd f)that comes with it. In Section 16, it lists the evidence from trials supporting it's use.
No clear efficacy. Conflicting results from clinical trials. But, in a crunch, it is nice to have in the arsenal.

I think there is some comparison to be made with the emergency use authorization of this drug for H1N1 and a parent choosing an alternative treatment for their childs scoliosis. The proof isnt there. There is some evidence. There is evidence it does not do harm. There are no proven alternatives.

concerned dad
11-08-2009, 02:00 PM
There is a reason chiros have the reputation they have. It's the same reason that Chirobase website is so chock full, bursting at the seams, of material.

Texmarinemom would have a field day with what I'm going to say here but....

Remember the Disney movie Pollyanna? There is a line in there where she quotes her father (who was quoting Lincoln)

"If you look for the worst in people expecting to find it, you surely will"

:o

Ballet Mom
11-08-2009, 02:02 PM
True, but it would be some evidence :D

I think it much more likely (still highly unlikely) that it is the vaccines than illegal drug use. I think it would have been apparent by now if it were illegal drug use (because not everyone has used illigal drugs however virtually everyone vaccinates their kids). (It would have dawned on someone at one of their conventions as all the parents were out in the parking lot twisting up doobies. Although, I suppose it could have been missed (Thats why they call it dope):D



LOL! They actually have conventions for this? It's worse than I thought. :D

Actually, I think increasingly more people are not vaccinating their kids and at some point, a critical mass will be hit, unfortunately.

Pooka1
11-08-2009, 02:04 PM
Texmarinemom would have a field day with what I'm going to say here but....

Remember the Disney movie Pollyanna? There is a line in there where she quotes her father (who was quoting Lincoln)

"If you look for the worst in people expecting to find it, you surely will"

:o

When you have a situation where no two chiros can point to the same spot on a radiograph where the "subluxation" is, then it's all "worst." There is no escape hatch for these guys. :)

Pooka1
11-08-2009, 02:05 PM
LOL! They actually have conventions for this? It's worse than I thought. :D

Actually, I think increasingly more people are not vaccinating their kids and at some point, a critical mass will be hit, unfortunately.

That's right. I think everyone who doesn't have a medical reason (like an adverse reaction to the first shot in a series) to not immunize their children is banking on herd immunity. It is the height of selfishness and they know it.

Pooka1
11-08-2009, 02:08 PM
True, but it would be some evidence :D

The point of that story about one of my professor's seeing his draft manuscript sail through the air into the "circular file" is that you can't necessarily extract anything from a flawed study.

The only evidence to extract is that it is damn hard to do controlled medical studies.

Ballet Mom
11-08-2009, 02:10 PM
That's right. I think everyone who doesn't have a medical reason (like an adverse reaction to the first shot in a series) to not immunize their children is banking on herd immunity. It is the height of selfishness and they know it.


Yes, it's one thing for them to risk their own kids lives, but I know a lovely young man who has a mitochondrial disorder who absolutely cannot take the vaccines. Even a flu shot has him in the hospital for a couple of months recovering. So people like him are relying on the "herd" for protection....and now they are putting his life at risk also. And he is a lovely teenager. It breaks my heart.

concerned dad
11-08-2009, 02:15 PM
The point of that story about one of my professor's seeing his draft manuscript sail through the air into the "circular file" is that you can't necessarily extract anything from a flawed study.

The only evidence to extract is that it is damn hard to do controlled medical studies.

You are right, it is different for medical studies.
Uncontrolled studies are "flawed" however they are ethical. And, although they "cant necessarily" extract anything from them, I hope they try their best to extract all they can.

bas2101
11-08-2009, 02:19 PM
If you are talking reduction in Cobb angle, then yes, they win the track record award. But, that is just one track in the world of scoliosis. If you are talking about reducing pain & increasing lung function, there are several "track records" that have been very affective for many scoliosis patients-Schroth, yoga, exercise, pain management programs.

"The universe of track records?" I don't even know how to respond to this. I was unaware that the universe held a track record.

Both blood transfusion and cancer treatment mean something, but not the same thing to everyone. As far as cancer treatment goes, personally, I would not rely on the track record here in the US. I have seen too many people die from the treatment, not the cancer. But, that is just my opinion. Your examples seem to point to parents who refuse treatment due to religious reasons, which is in no way the case in my situation, or the case in many others. Regardless, why isn't a judge banging down my door? Because, while my daughter is well within surgical range, it isn't an emergency. And, I am sick of it being treated as one the minute a patient hits the 40-50 degree mark. I am tired of parents being told "No, your child's surgery can't wait until summer." I am tired of hearing "there are no other options," when there are. It is not that there "are no other options," it is that the surgeons either don't know about them, or don't believe in them. That doesn't give them the right to claim that they don't exist. Case in point-my own, which happens to reflect that of many others I have spoken with: I had the option of VBS-but was told "there are no options." Had my 3 surgeons at the time had no idea who Dr. Betz was? I had the option of Cheneau/Schroth-but was told "there are no options." I had the choice to wait until summer for my daughter's surgery, or 2 years, or 3, or 10 for that matter. But, was told, "there are no options" "This can't wait until summer" and if I chose to do so, I would be endangering my child. Well, there were options-one being to wait. So, yes, I blame the surgeons for closing the doors to patients through their ignorance, and sometimes even their fear tactics, when they should either admit that there at least "might" be other options, or give up the position of door keeper. And, I see the same thing happening on the forum at times-the closing of mamamax's threads for one.

I wasn't saying there are NO surgeons focusing on prevention, but how many-really? And, how many beyond bracing and surgical techniques? I realize no one can have all of the answers. Which is why, if they really cared to expand scoliosis care, they would rally for more integrated care, and step down from their position as the authority in scoliosis treatment (beyond surgery that is). If this is started sooner than later, then there will be others to steer the ship, or at least, to help steer the ship-thus the possibility for better care. But, instead they focus on surgery-which is what they should be focusing on.

Yes, I can post the other options that did help. Waiting for one, which allowed my daughter to grow 4 inches (and whatever she has remaining), and give me time to search for whatever I can before she has reached maturity. Schroth and Cheneau for two. It has allowed my daughter to to increase her lung function, increase her core muscles, reduce her pain, and reduce her misalignment by over 4 cm. I will know Tuesday if her Cobb angle has progresses at this point or not. But, while I worry about Cobb angle, it is not the only factor driving my decisions. This may be where we differ.

I understand that there may not exist enough "proof" out there in the literature that treatments like the above work. But, what are we supposed to do, wait around for them to come out while our kids get worse, or just listen to surgeons who give us limited options?

I am not only assuming there must be good conservative treatments only because I want there to be. I am not that ignorant. I am not even just assuming-see above-there were other options-they just weren't expressed. And, yes, I was always free to explore other options, which I did, for 7 years and counting. But, while parents are doing this, not only are they losing time, but often times they are dismissed by their surgeon for doing so.

Increased lung capacity can occur before a patient reaches surgical range. Some patients have reduced lung capacity with a 30 degree curve, while some at 60 degrees don't. I did not manufacture this issue, it actually exists.

Fusion and revision actually only don't blow my mind. They used to, but they haven't for years. It is a very easy concept to wrap my head around. You are assuming this. I just want to try everything first to avoid both.

I agree that perhaps the MD's/Phd's will be the ones improve scoliosis care-only time till tell.

I am always considering my approach. I have always looked where I went wrong in the last 7 years, and have changed my approach many times to be more opened minded. But, I am not basing my opinions on my experiences alone. I am also basing them on the numerous parents I have spoken with who have had similar experiences. I am not talking about 1 or 2-but many.

Saying I am trying to get blood from a stone, is like saying the orthopedists aren't capable of change. Or at least, the system in regards to scoliosis care isn't capable of changing, isn't capable of admitting that right now, scoliosis treatment is not enough. It is capable, and I think eveyrone will agree that it isn't enough. The only way it can be improved, in my opinion, is by an integration of several other types of specialists-but first, the surgeons have to either step down from the throne, or be de-throned from being the authority.

In the end, I think like Concerned Dad said, it is fair that we can agree to disagree, which obviously in many cases, we do.

Pooka1
11-08-2009, 02:29 PM
"The universe of track records?" I don't even know how to respond to this. I was unaware that the universe held a track record.

No the "universe" of track records simply means ALL the track records out there. It is not mean the track record of the universe.

When someone refers to the "universe" of something it just means everything within that something.


In the end, I think like Concerned Dad said, it is fair that we can agree to disagree, which obviously in many cases, we do.

Okay.

concerned dad
11-08-2009, 02:29 PM
I understand that there may not exist enough "proof" out there in the literature that treatments like the above work. But, what are we supposed to do, wait around for them to come out while our kids get worse, or just listen to surgeons who give us limited options?


I really like how this statement ties in with my comments about Emergency Use Authorization of drugs (and, similarly, compassionate use authorization).

Pooka1
11-08-2009, 02:36 PM
I really like how this statement ties in with my comments about Emergency Use Authorization of drugs (and, similarly, compassionate use authorization).

Disliking the fact that reality bites doesn't make it not so.

We all wish there were effective preventative treatments obviously. It's just that some of us don't throw innocent professionals under the bus when making that point. Comments about giving up thrones are simply not rational when discussing orthopedic surgeons and their role in treatment.

Anyone and everyone is free to develop an effective conservative treatment. The world is still waiting. It could happen though it is not likely to emerge from the present list as some of these modalities have been around for decades and are not obviously effective.

My money is on the molecular guys to solve this, NOT the surgeons.

bas2101
11-08-2009, 02:44 PM
PS-

Sharon-we are all biased-even when we do our best no to be. Claiming that science is the best game in town, is bias.

Concerned Dad-The pretext for this thread was indeed in regards to who gets to decided what is or isn't discussed on this forum. But, it comes from the much larger picture of who gets to decide when it comes to our medical choices. We assume it is us of course, but often times-whether it be from lack of information, withheld information, judicial decisions, funds to pay for treatment, fear tactics, the squashing out of other choices, whatever-it is not.

Pooka1
11-08-2009, 02:49 PM
PS-

Sharon-we are all biased-even when we do our best no to be. Claiming that science is the best game in town, is bias.

Oh really? What is better than the scientific method in rooting out bias and gaining REAL knowledge?

Nothing.

Science is the only game out there that is self-correcting and where you can actually get points for proving YOURSELF wrong.

It is truly the only game in town for getting to the bottom of anything. This is not news.

bas2101
11-08-2009, 02:52 PM
Just because science is unbiased (although I disagree here), does not mean favoring it isn't. But,we can agree to disagree on this too.

hdugger
11-08-2009, 08:01 PM
I love science, but it's really an inadequate tool for complex issues. If you have a simple issue with a single cause, science is your tool. If you have a complex issue with multiple influencing factors, science is going to have a very hard time getting to the bottom of the problem.


Oh really? What is better than the scientific method in rooting out bias and gaining REAL knowledge?

Nothing.

Science is the only game out there that is self-correcting and where you can actually get points for proving YOURSELF wrong.

It is truly the only game in town for getting to the bottom of anything. This is not news.

Pooka1
11-08-2009, 08:14 PM
I love science, but it's really an inadequate tool for complex issues. If you have a simple issue with a single cause, science is your tool. If you have a complex issue with multiple influencing factors, science is going to have a very hard time getting to the bottom of the problem.

I disagree in principle and practice.

But assuming you are correct, name anything better.

Pooka1
11-08-2009, 08:14 PM
Just because science is unbiased (although I disagree here), does not mean favoring it isn't. But,we can agree to disagree on this too.

You are arguing with taking issue with the only game in town?

Name something, anything, that is better.

hdugger
11-08-2009, 08:50 PM
For scoliosis, to the best of my knowledge, *nothing* is based on good science. Not the surgical treatment, not the bracing, not chiropracters, not exercise . . . nothing. It's all just muddling through. We try something - if it seems to work, we go on doing it. We tinker a little and make slight improvements. And, so it goes. Rinse and repeat.

So, I'm voting for muddling through. Without it - if we instead waited for the results of pure, good science - we'd have absolutely nothing to offer those with scoliosis.


I disagree in principle and practice.

But assuming you are correct, name anything better.

LindaRacine
11-08-2009, 10:19 PM
Did pigs start flying. (Thought for certain they must, as Sharon and BalletMom have agreed on something.)

Arthur Copes was an unlicensed orthotist, not a chiropractor.

--Linda

Pooka1
11-09-2009, 05:27 AM
For scoliosis, to the best of my knowledge, *nothing* is based on good science. Not the surgical treatment, not the bracing, not chiropracters, not exercise . . . nothing. It's all just muddling through. We try something - if it seems to work, we go on doing it. We tinker a little and make slight improvements. And, so it goes. Rinse and repeat.

So, I'm voting for muddling through. Without it - if we instead waited for the results of pure, good science - we'd have absolutely nothing to offer those with scoliosis.

Yes hands are tied. But even people muddling through are at least trying to use the scientific method on the way when they can. The BRaIST study is one example. Surgeons depart from that into "muddling through" such as uncontrolled studies, "anecdote as data," continuous improvement of surgical techniques based on the previous problems, etc. in the mean time.

That they are forced to muddle through doesn't mean science isn't the gold standard nor that it wouldn't be best if they could use the scientific method. Nobody is going to choose anecdote if they can test hypotheses adequately.

mamamax
11-09-2009, 06:02 AM
Arthur Copes was an unlicensed orthotist, not a chiropractor.

--Linda

Linda makes an important point here! Mr. Copes was indeed an unlicensed orthotist and not a chiropractor. The licensing and oversight of the chiropractic profession is handled on a state level in the US - maybe orthotists are also? Louisiana (where Copes practiced) is not one of the more "stricter" states in terms licensing and oversight of chiropractors. The title Dr is legally granted to Chiropractors based upon their level of education. Most folks understand that title is not the same as MD - or at least I certainly hope they do.

Some chiropractors have gone on to specialize, and dedicate their practice to scoliosis treatment, trained with the inventors of the Spinecor brace (and continue to work closely with them), achieved certification to treat (unsupervised), document their results and publish them in the Scoliosis Journal, prepare SOSORT presentations, and have traveled to Germany several times in order to obtain Schroth certification.

Certification to treat with Spinecore on an unsupervised basis is, a big big thing. And something bty - that Drs Weiss and Wong did not have when they conducted their less than positive studies. Neither to this date, are certified by the manufacturer to treat on an unsupervised basis - that information can be found at the manufacturer's web site. Just an FYI for those who rely heavily on studies ;-)

tonibunny
11-09-2009, 08:57 AM
To be honest, if someone says "Hi, I'm a Doctor, I can treat your medical condition" then I do assume they mean they are a medically qualified doctor.

And if someone says "Come to our clinic, we have some of the most experienced scoliosis doctors in the world working there", I assume they mean they are medically qualified doctors too.

I think that it is deliberately misleading not to state that they are chiropractors. My best friend is a Doctor of Classics, and he knows a lot about what it's like to live with scoliosis. Would he be misleading anyone if he said to them "hello, I'm a doctor and I have a lot of experience with scoliosis"?

concerned dad
11-09-2009, 09:45 AM
One more click (http://www.themonastery.org/?destination=ordination)and I become

Reverand Concerned Dad

:eek:

Thankfully, the situation isnt that bad for Chiropractors.

CHRIS WBS
11-09-2009, 11:19 AM
The gold standard? I mentioned earlier in the thread, that scoliosis should treated with an integrated approach between many physicians, including the surgeon, if need be. Since scoliois affects many systems of the body-nervous, skeletal, muscular, immune, respiratory, endocrine (potentially), and also connective tissue, lungs, heart, genes, and so on, there should as many specialists, treating a patient in tandem. Including orthorist & PT if need be.

Good luck with that one. With sweeping healthcare reform underway, a boatload of specialists treating a scoliotic ain’t gonna happen.

frolicin
11-09-2009, 12:01 PM
Do what works for you even if it means doing what ever you have to, to find what you need. Don't discount any type of treatment until you find your answer. And don't listen to some of the posters here that like to argue over scraps of data. Just listen to your gut feeling and don't give up. There are answers out there and they might come from "mainstream" or "alternative" methods, who cares, they are out there if you look hard enough and keep an open mind.

jrnyc
11-09-2009, 01:56 PM
Hi Brooke
as for integrated approach with different specialists working together...in medicine, i have found that is rare...when lyme patients were deathly sick with orthopedic, neurological & all kinds of other problems, as lyme is a multi-systemic disease, they didnt cooperate or work together...why would they do so for scoliosis? i dont know why, but medical doctors seem to rarely coordinate treatment between specialties..that has been my experience, anyway...

jess

Karen Ocker
11-09-2009, 02:25 PM
Attempts at scoliosis treatment-all non-surgical until the 1900's. Surgery tried because of their failures out of desperation.


http://drlloydhey.blogspot.com/2008/06/history-of-scoliosis-treatment-3000-bc.html

Karen Ocker
11-09-2009, 02:48 PM
http://www.uihealthcare.com/depts/medmuseum/wallexhibits/scoliosis/history/treat1920.html

http://www.uihealthcare.com/depts/medmuseum/wallexhibits/scoliosis/treatment/forms.html

http://www.uihealthcare.com/depts/medmuseum/wallexhibits/scoliosis/treatment/observation.html

Karen Ocker
11-09-2009, 02:59 PM
http://www.uihealthcare.com/depts/medmuseum/wallexhibits/scoliosis/history/treat1920.html

Pooka1
11-09-2009, 03:30 PM
Did pigs start flying. (Thought for certain they must, as Sharon and BalletMom have agreed on something.)

Peoples of the world can unite around the common notion that modified hand-held jig saws are not likely to constitute a cure for scoliosis. :D

mamandcrm
11-09-2009, 04:52 PM
Hi Brooke,

I hope your daughter's x-ray tomorrow goes well although it sounds like you are prepared for whatever the numbers are.

Chris

mamandcrm
11-09-2009, 05:07 PM
For scoliosis, to the best of my knowledge, *nothing* is based on good science. Not the surgical treatment, not the bracing, not chiropracters, not exercise . . . nothing. It's all just muddling through. We try something - if it seems to work, we go on doing it. We tinker a little and make slight improvements. And, so it goes. Rinse and repeat.

So, I'm voting for muddling through. Without it - if we instead waited for the results of pure, good science - we'd have absolutely nothing to offer those with scoliosis.

hdugger,

You hit the nail right on the head in my book except that I do think the surgery is based on good science. But I will do everything in my power to try to keep my kid from needing it. It would be nice if someone somewhere would do a study of bracing, and any other remotely promising therapies, in JIS patients (whom I suspect may respond very differently to treatment than AIS patients) but I'm not waiting around for it.

Karen Ocker
11-09-2009, 06:02 PM
Read all the historical info I posted in the previous 2 posts today. That will show all the alternatives tried over the years before surgery was even considered.

mamamax
11-09-2009, 06:09 PM
One more click (http://www.themonastery.org/?destination=ordination)and I become

Reverand Concerned Dad

:eek:

Thankfully, the situation isnt that bad for Chiropractors.

You had me laughing on that one CD :-) Did you know that if you do decide to do this, you will be able to legally marry folks - and of course, we will all be calling you for counseling!

Regarding chiropractors in the US ...

Education Requirements
From the American Chiropractic Association
http://www.acatoday.org/content_css.cfm?CID=746

Educational requirements for doctors of chiropractic are among the most stringent of any of the health care professions.

The typical applicant at a chiropractic college has already acquired nearly four years of pre-medical undergraduate college education, including courses in biology, inorganic and organic chemistry, physics, psychology and related lab work. Once accepted into an accredited chiropractic college, the requirements become even more demanding — four to five academic years of professional study are the standard. Because of the hands-on nature of chiropractic, and the intricate adjusting techniques, a significant portion of time is spent in clinical training.

Doctors of chiropractic — who are licensed to practice in all 50 states, the District of Columbia, and in many nations around the world — undergo a rigorous education in the healing sciences, similar to that of medical doctors. In some areas, such as anatomy, physiology, rehabilitation, nutrition and public health, they receive more intensive education than their MD counterparts.

Like other primary health care doctors, chiropractic students spend a significant portion of their curriculum studying clinical subjects related to evaluating and caring for patients. Typically, as part of their professional training, they must complete a minimum of a one-year clinical-based program dealing with actual patient care. In total, the curriculum includes a minimum of 4,200 hours of classroom, laboratory and clinical experience. The course of study is approved by an accrediting agency which is fully recognized by the U.S. Department of Education. This has been the case for more than 25 years.

This extensive education prepares doctors of chiropractic to diagnose health care problems, treat the problems when they are within their scope of practice and refer patients to other health care practitioners when appropriate.

mamamax
11-09-2009, 06:10 PM
Hi Brooke,

I hope your daughter's x-ray tomorrow goes well although it sounds like you are prepared for whatever the numbers are.

Chris

Ditto here Brooke - all the best to both of you!

Pooka1
11-09-2009, 07:59 PM
Read all the historical info I posted in the previous 2 posts today. That will show all the alternatives tried over the years before surgery was even considered.

Of course you are right.

Of course conservative treatments have been around for ever.

Of course people will continue to hope that one day one will work.

Of course that might happen.

But how likely is that looking given the history?

If a conservative treatment is ever shown to be effective, I predict it will not come from among the present choices.

Pooka1
11-09-2009, 08:16 PM
Chiropractic Admission Standands Lowest among Health Professionals

http://www.chirobase.org/03Edu/adm.html

A survey comparing U.S. chiropractic colleges with five other types of professional schools has found that chiropractic schools had the lowest standards. Publications and telephone inquiries were used to compile information on (a) the percentage of the previous year's entering class with a bachelor's degree, (a) the minimum grade point average (GPA) required for admission, and (c) the average GPA of the previous year's enrollees. The researchers noted that although the degree of undergraduate success may reflect the potential for professional success, further research would be needed to confirm this. The study found:

--------------------

So. Less than half have a college degree, and the average minimum GPA to get into a chiro college is... wait for it... 2.38. The average GPA of enrollees is 2.90. :eek::eek::eek::eek:

In contrast, more than 99% of med school folks have a college degree and the average minimum GPA to get in is 3.16. The average GPA of enrollees is 3.56.

I think my two almost 15 y.o.s olds could gain admittance to chiro college without a high school diploma.

Pooka1
11-09-2009, 08:16 PM
You had me laughing on that one CD :-) Did you know that if you do decide to do this, you will be able to legally marry folks - and of course, we will all be calling you for counseling!

Regarding chiropractors in the US ...

Education Requirements
From the American Chiropractic Association
http://www.acatoday.org/content_css.cfm?CID=746

Educational requirements for doctors of chiropractic are among the most stringent of any of the health care professions.

The typical applicant at a chiropractic college has already acquired nearly four years of pre-medical undergraduate college education, including courses in biology, inorganic and organic chemistry, physics, psychology and related lab work. Once accepted into an accredited chiropractic college, the requirements become even more demanding — four to five academic years of professional study are the standard. Because of the hands-on nature of chiropractic, and the intricate adjusting techniques, a significant portion of time is spent in clinical training.

Doctors of chiropractic — who are licensed to practice in all 50 states, the District of Columbia, and in many nations around the world — undergo a rigorous education in the healing sciences, similar to that of medical doctors. In some areas, such as anatomy, physiology, rehabilitation, nutrition and public health, they receive more intensive education than their MD counterparts.

Like other primary health care doctors, chiropractic students spend a significant portion of their curriculum studying clinical subjects related to evaluating and caring for patients. Typically, as part of their professional training, they must complete a minimum of a one-year clinical-based program dealing with actual patient care. In total, the curriculum includes a minimum of 4,200 hours of classroom, laboratory and clinical experience. The course of study is approved by an accrediting agency which is fully recognized by the U.S. Department of Education. This has been the case for more than 25 years.

This extensive education prepares doctors of chiropractic to diagnose health care problems, treat the problems when they are within their scope of practice and refer patients to other health care practitioners when appropriate.

Apparently, this is all lies.

mamamax
11-10-2009, 03:47 AM
The article above regarding Chiropractic standards has not been updated since 1999. The article also fails to mention specifically where the information in it was obtained from. Apparently the article is based on someone's "survey", parameters of which are also not defined. Not exactly the kind of article I would use as a reference in a college paper - but hey, it works for someone with an agenda!

As for calling the American Chiropractic Association a bunch of liars based upon the information they post on their web page - compared to someone's undefined survey - well, lets just say I'm not convinced.

Pooka1
11-10-2009, 05:29 AM
When you post self-serving biased material from chiropractors, you should expect to be called on it.

I think we all know which way the wind is blowing on chiro versus medical school.

mamamax
11-10-2009, 05:55 AM
Oh my gosh Sharon. Well, if you post outdated information (over a decade old) gathered through a very poorly defined survey - then you should expect to be called on that!

People well understand the difference in professions - that is not the issue.

tonibunny
11-10-2009, 07:29 AM
Perhaps people who usually reside in the US understand the difference between the professions, but coming from outside, it is really difficult to work out.

As I've said before, here in the UK chiropractors are not allowed to refer to themselves as "Doctors" unless they qualify that at all times by explicitly stating that they are chiropractors. They can't say "Hello, I'm a Doctor, I can help you" - they would have to say "Hello, I'm a Doctor of Chiropractic, I can help you". They also have to make it quite clear that they are not a registered medical practitioner.

There may be many people who have come to the US from outside, who might believe a chiropractor who said "Your son's scoliosis is very severe and it is important that he is seen by one of the very best doctors. Come to our clinic, some of the most experienced scoliosis doctors in the world work there!". NB this is some advice I have seen given by a CLEAR Institute chiro to the parents of a pre-teen boy on an internet forum; those parents could have been anywhere in the world, and wouldn't necessarily know that the person giving them advice wasn't a medically qualified doctor.

I just think it would be really helpful if the distinction between Chiropractor and MD was legally enforced to be as clear as it is in the UK.

mamamax
11-11-2009, 05:32 PM
Hi Toni ~

Yes, I do think that most people in the US understand the difference in professions and titles. I do not know enough about the situation you speak of with Clear to comment on it. But your post, and the topic finds me pondering a few things.

As you probably know, my treatment providers are chiropractors who specialize only in scoliosis treatment, are Spinecor and Schroth certified (certified to a level where they are proficient to apply the techniques unsupervised), they have trained also with the Canadian MDs (surgeons) who invented the brace, continue to work closely with them - conduct research studies on a continuing basis, have participated in SOSORT presentations, published work in the Scoliosis journal - and teach at the University level. As members of the American Chiropractic Association, they make their profession/title quite obvious on their web page.

Over the last 40 years I have sought out the services of a chiropractor from time to time in seeking pain relief. I've never personally experienced one of them misrepresenting their profession or title. However - some have, and that is deplorable. Mis-representation happens many places both within and without all the many different medical professions - and when that happens there are legal steps here in the US that one can and should take. I also think it is important not to deem an entire profession corrupt due to the unethical practices of a few.

tonibunny
11-11-2009, 06:09 PM
I also think it is important not to deem an entire profession corrupt due to the unethical practices of a few.


Oh, I totally agree with this :) I'm sure that the vast majority of chiros are ethical and honest, and have no problems working with medically qualified doctors when it is necessary for the best interests of their patients.

What's worrying is that a lot of those that I've seen promoting themselves on scoliosis websites have been ones that are trying to mislead or scare people, and they're doing the honest members of their profession a great disservice.

mamamax
11-11-2009, 07:54 PM
I totally agree with you Toni! Those in any profession who would intentionally embellish, twist, and distort truth for the sake of misleading (and scaring) others do a great disservice to us all. Lord knows the truth is scary enough without altering it.

That dern Mayan calender comes to mind as an off topic example - many well respected scientific minds see its ending as a simple reset - but for the sake of entertainment (and profits) there are those making it appear as a terrifying doomsday prophesy.

bas2101
11-14-2009, 12:40 PM
Follow up....


My dd was dx with scoliosis at 7 yrs old with 40T/23L. That was 2002. It was suggested that we either brace her for somewhere around 10 years, or try growing rods. Both prognoses for treatment were not good according to the orthopedists, so we set out to try all and everything we could find otherwise.

I do not wish to list the numerous treatments we sought from 7-12 years old, because I do not wish to degrade a treatment, simply because it did not halt my daughter’s progression.

By Jan 2008, almost 13 yrs old, my dd had progressed to 68T/46L or 70T/42L (depending on who read it). We were considering surgery at this time, but were not convinced we had tried everything. At this time she was pre-menarch, Risser 0, and had a lot of growing left to do.

In Feb 2008, we immediately began Scrhoth and a Rigo-Cheneau brace. She has been wearing the brace 23/7 (with the exception of Schroth, PE, and the occasional break), and doing Schroth 5x/week for about 45 minutes each (sometimes less). She has been doing this for the last 1 year and 8 months.

Her current out of brace x-ray reads 59.5T/50L. While, she is nowhere in the clear, she has improved while growing over 4 inches.

When we saw the surgeons in Jan 2008, they said there was nothing we could do, and that her surgery could not even wait until summer because of the threat of further progression. She was pre-menarch, Risser 0, and still had a lot of growth left. Yet, these indicators were the same reasons we were still able to brace her and have some confidence that it would either stabilize or improve her curve. While her growth was her enemy, it was also her only hope.

While, scoliosis will always be a part of my dd’s life, I believe our positive experience is a testament to Cheneau/Schroth. My daughter was pre-menarche, Risser 0, and grew over 4 inches, while taking her main curve from 68-70 to 59.5 (60 if you wish). She also improved her lung function (which is over 100%), her alignment by over 4.5 cm, and was able to carry out her growth. I only wonder what improvements she would have had if we had started this sooner (oh well!).

Since she is currently still growing at 14 yrs, Risser 2, and barely post-menarche, she will remain braced for the next year or so, and then begin the weaning process-at which point, Schroth will be more important for her quality of life. If she chooses surgery in the future, it will be her choice. But, for now, her scoliosis is manageable, and not the emergency it was made to be 2 years ago.

Anyone interested in more details, can PM me.

Ballet Mom
11-14-2009, 02:45 PM
My dd was dx with scoliosis at 7 yrs old with 40T/23L. That was 2002. It was suggested that we either brace her for somewhere around 10 years, or try growing rods. Both prognoses for treatment were not good according to the orthopedists, so we set out to try all and everything we could find otherwise.


By Jan 2008, almost 13 yrs old, my dd had progressed to 68T/46L or 70T/42L (depending on who read it). We were considering surgery at this time, but were not convinced we had tried everything. At this time she was pre-menarch, Risser 0, and had a lot of growing left to do.

In Feb 2008, we immediately began Scrhoth and a Rigo-Cheneau brace. She has been wearing the brace 23/7 (with the exception of Schroth, PE, and the occasional break), and doing Schroth 5x/week for about 45 minutes each (sometimes less). She has been doing this for the last 1 year and 8 months.

Her current out of brace x-ray reads 59.5T/50L. While, she is nowhere in the clear, she has improved while growing over 4 inches.


Hi Brooke,

I think it's wonderful that you were able to make your own decisions regarding your daughter's treatment and it has been successful for you. Thank God we live in a country where we are still able to make our own treatment decisions, at least for the moment.

I really think the Cheneau brace should be studied more here in the U.S. I think it is able to get greater correction than the typical TLSO braces out there, and apparently works three-dimensionally also, and so gets better results than a lot of the braces out there, even on the more aggressive curves.

I have to say, my daughter has obtained excellent results using over-correcting night braces and exercising the spine daily through ballet, not Schroth. So other things work also, however, I do see the Cheneau/Shroth combo seemingly to work well on the most agressive curves and that should certainly be in the US orthopedists' arsenal....not simply ignored because it's from Europe.

Ballet Mom
11-14-2009, 02:53 PM
Maria-

Thank you for getting the VBS info out there. Even though my daughter is no longer a candidate, she would have been. And, the procedure was around when she was dx, only no one mentioned it to us. I don't expect that the doctors should have recommend it against their better judgment, but they could have at least mentioned it as treatment that was currently being used for scoliosis. I assume they knew it was being used. Then, we at least would of had the option to look into it further. And, would potentially not be in the position we are in today.

Brooke

Hi Brooke,

I just wanted to point out that according to Dr. Betz himself, thoracic curves greater than 35 degrees have "dismal" results with the stapling. They are now starting to use growing rods in conjunction with the stapling on curves greater than 35 degrees which means mutliple surgeries during growth, just like regular growing rods. And still, no longterm follow-up. Bracing has been around a long, long time, and no surgery required.

Here's a link to the presentation made by Randy Betz MD, regarding the stapling results at this year's POSNA conference in case you're interested.

Look for the video entitled "Is Non-Fusion Surgery the Answer in AIS? Clinical Outcomes of NITINOL Staples".

Click on the "One Day Course-Adolescent Idiopathic Scoliosis: Understanding the Deformity and Current Treatment" first.

http://posna.gmetonline.com/PresentationSearch.aspx?fixedkey=ZSuUICNsUBWkgVk&subscriptionpackageid=31

bas2101
11-14-2009, 03:52 PM
Balletmom-

Thank you for the information. I will take a look.

I am glad your daughter is doing well. I hope I didn't insinuate that I think Cheneau/Schroth is the only option out there. I just know it is one option that has worked for some kids-appropriate literature or not. I wanted to relay our experience, and others can take from it what they like.

mariaf
11-14-2009, 08:36 PM
Hi Brooke,

I just wanted to point out that according to Dr. Betz himself, thoracic curves greater than 35 degrees have "dismal" results with the stapling. They are now starting to use growing rods in conjunction with the stapling on curves greater than 35 degrees which means mutliple surgeries during growth, just like regular growing rods. And still, no longterm follow-up. Bracing has been around a long, long time, and no surgery required.

Here's a link to the presentation made by Randy Betz MD, regarding the stapling results at this year's POSNA conference in case you're interested.

Look for the video entitled "Is Non-Fusion Surgery the Answer in AIS? Clinical Outcomes of NITINOL Staples".

Click on the "One Day Course-Adolescent Idiopathic Scoliosis: Understanding the Deformity and Current Treatment" first.

http://posna.gmetonline.com/PresentationSearch.aspx?fixedkey=ZSuUICNsUBWkgVk&subscriptionpackageid=31

Ballet Mom,

That link did not work for me unfortunately.

In any event, it's true that Dr. Betz and others have refined the criteria for VBS to include mainly curves in the mid-30's and below.

That said, my own son was "stapled" at 40 degress almost six years ago and is doing well. I know several other children who were around 40 degrees when they had VBS performed and are also doing well a few years later. Many were younger children, such as my son who was 5 1/2 at the time of surgery.

Because the results on curves over 35 are not as good as the results for curves under 35 degrees (which have extremely high success rates), Dr. Betz has chosen that point as the general cutoff - reason being, he does not want to see surgery performed on any child without a very strong chance of success.

I know this not because of articles I've read online, but because I see Dr. Betz every 4-6 months and I often e-mail him with questions as well. I try to keep up on all the latest data and information with regard to VBS since I co-moderate a VBS website and want to be able to give parents the latest, most accurate information. He's been wonderful and very forthcoming in providing this information.

It is also important to note that each child is evaluated on an individual basis in order to determine if they are good candidates for VBS. So a child with a curve in the high 30's who is, let's say, very flexible might be considered a candidate, while a child with a 30 degree curve might not - if, say, there was not enough growth remaining for VBS to be effective.

In addition, Dr. Betz and his team often recommend bracing if they feel it is the best option for a particular child.

For these reasons, the best thing to do - if one is interested in VBS or any other treatment method for that matter - is to seek a consult by a doctor who is trained in these treatment methods.

While the hybrid rod being used at Shriners (which is more similar to the VEPTR in how and where it is attached, and therefore does not cause spontaneous fusion like traditional growing rods) is a surgery that requires lengthenings 1-2 times per year, for some children (whose curves have proven to be too aggressive for either bracing or VBS to be effective), it is the only option (other than fusion). I know a girl who just had a lengthening this past week and she was back in school within 2 days! That is NOT to take any surgery lightly - but again, some curves do require a more aggressive form of treatment, in the hopes of avoiding fusion if possible.

mariaf
11-14-2009, 08:46 PM
Bracing has been around a long, long time, and no surgery required.

I have to assume you mean that no surgery is required IF bracing is successful. Of course, we all know patients for whom bracing failed and they went on to fusion.

I'm not knocking bracing - just trying to clarify the statement.

Ballet Mom
11-15-2009, 02:46 AM
Hi Maria,


That link did not work for me unfortunately.

I think the site maxed out on it's broadband quota, try again today.



In any event, it's true that Dr. Betz and others have refined the criteria for VBS to include mainly curves in the mid-30's and below.

That said, my own son was "stapled" at 40 degress almost six years ago and is doing well. I know several other children who were around 40 degrees when they had VBS performed and are also doing well a few years later. Many were younger children, such as my son who was 5 1/2 at the time of surgery.

I was talking about thoracic curves. Dr. Betz states that six of the eight thoracic curves greater than 35 degrees progressed past fifty degrees. That is dismal. The lumbar curves have a much better success rate with stapling. Of course, bracing is also more effective on lumbar curves than on thoracic curves.
...


It is also important to note that each child is evaluated on an individual basis in order to determine if they are good candidates for VBS. So a child with a curve in the high 30's who is, let's say, very flexible might be considered a candidate, while a child with a 30 degree curve might not - if, say, there was not enough growth remaining for VBS to be effective.

That is also cherry-picking the kids who would be most-likely to be successful with bracing, i.e. those with a flexible spine. It is interesting that by stapling the thoracic curves that are less than or equal to 35 degrees, Dr. Betz had a success rate of 79 percent...defined by an increase of ten degrees or less, apparently. That doesn't seem much better than bracing by itself.

I'm sure this surgery has its uses, if my child was going to spend ten years in a brace I might be looking into it, or if I had a child that absolutely refused to wear a brace. However, if my daughter had been stapled with her 35 degree thoracic, extremely flexible curve, she may very well have ended up with fusion surgery.

Ballet Mom
11-15-2009, 02:54 AM
I have to assume you mean that no surgery is required IF bracing is successful. Of course, we all know patients for whom bracing failed and they went on to fusion.

I'm not knocking bracing - just trying to clarify the statement.


I meant no surgery is required to begin or during brace treatment. If the treatment fails, then surgery may be required, as we all know.

The whole purpose of my post was just to let Brooke know that it was appropriate that her orthopedists didn't refer her onto this procedure because now that more data is in, her daughter most likely would have ended up with fusion surgery.

Ballet Mom
11-15-2009, 02:57 AM
Balletmom-

Thank you for the information. I will take a look.

I am glad your daughter is doing well. I hope I didn't insinuate that I think Cheneau/Schroth is the only option out there. I just know it is one option that has worked for some kids-appropriate literature or not. I wanted to relay our experience, and others can take from it what they like.

I think it's great you shared your details. I think your data should help convince people that the Cheneau brace should be studied in more detail here in the States. Thank you.

bas2101
11-15-2009, 08:22 AM
I am not necessarily convinced that VBS would not have been an option for my daughter. She was only 7, and very flexible. While 6/8 progressing to surgery seems dismal, it is only 6/8. Not a very large group. But, what is past is past, and I'll never know. So, hopefully others will.

mariaf
11-15-2009, 08:46 AM
Hi Maria,



I think the site maxed out on it's broadband quota, try again today.




I was talking about thoracic curves. Dr. Betz states that six of the eight thoracic curves greater than 35 degrees progressed past fifty degrees. That is dismal. The lumbar curves have a much better success rate with stapling. Of course, bracing is also more effective on lumbar curves than on thoracic curves.
...



That is also cherry-picking the kids who would be most-likely to be successful with bracing, i.e. those with a flexible spine. It is interesting that by stapling the thoracic curves that are less than or equal to 35 degrees, Dr. Betz had a success rate of 79 percent...defined by an increase of ten degrees or less, apparently. That doesn't seem much better than bracing by itself.

I'm sure this surgery has its uses, I know if my child was going to spend ten years in a brace I'd be looking into it or if I had a child that absolutely refused to wear a brace. However, if my daughter had been stapled with her 35 degree thoracic, extremely flexible curve, she may very well have ended up with fusion surgery.

Hi Ballet Mom,

By the way, my son's curve is thoracic (which I actually never thought of pointing out but I guess it's relevant).

I agree with bas2101 that 6/8 is a very small group. In fact, I personally know another child, besides my son, that had two curves (T/L) and started out at 42 degrees before VBS and is now also in the mid 20's about 3 years post op. Can these be the two successes? I find that strange but I guess it's possible.

You make a very good point though when you say that curves that will respond well to VBS may very well be some of the same ones that respond well to bracing (although, as in my son's case, bracing was only holding the curve, whereas VBS can reduce it). That's why VBS is sometimes referred to as an alternative to bracing.

Would I opt for VBS if my child had, say, a 30 degree curve and only had a year or two of bracing remaining in order reach skeletal maturity? Of course not.

But there are so many factors to take into consideration (size and location of curve, how much growth is remaining, whether or not the curve is flexible, whether or not compliance with bracing will be an issue, etc.).

It's so hard for any of us to say whether bracing, or VBS, will prevent fusion for a particular patient. I doubt the doctors even know. So all we can do, as parents, is educate ourselves, get a few opinions from doctors trained in the treatment method(s) we are pursuing (whichever ones they may be), and make a decision from there based on our child's particular situation.

I will all of our children the best possible outcome :)

mamandcrm
11-15-2009, 04:42 PM
Hi Brooke,

That's great that your dd's curve has improved. Hopefully with the months remaining she will see more improvement. I have become a believer in the Cheneau brace for many kids. That a child with a curve as progressed as your dd's can improve is a valuable thing. And she is not the only one I know of. I have personally spoken with the parent of a teenager at surgical level (who does Schroth as well) who is now under 30*. My gut (and experience with with what I know of in the practice we are in) is that younger, more flexible children with less advanced curves (under 45?) can see some fantastic results and that needs to be explored. But to be able to pull a surgical level child back from the brink is a really good result. Soon she will be mature, and surgery if she chooses it may still be in her future, but not as a young child. That's great. Thanks for posting.

beauvais
01-06-2010, 02:06 PM
We travel 12 hours to Luke for my daughter's Cheneau brace and I got the prescription by going to the appointment with my orthopedist and asking specifically for it. She is so convinced that we need surgery eventually that she did it to humor me. She also wrote me a script for Shroth PT and she'll do whatever we want just to prove to us we need surgery. If it works, then fine, but I have my scripts and that is all that matters. We also see a chiropractor who practices the Pettibon technique and who has great insight into alternative care for scoliosis (he's a hidden jewel among chiropractors). Between the two, I have a balance of information from the two opposing sides. My chiropractor is who recommended Luke, not my Orthopedist. When the day comes when the Orthopedist says it's time for surgery (and it will come), I'm not sure what we'll do, but I have a team of knowledgeable people in place to help guide me. I understand your frustrations, and I like a person who thinks outside the box :)
Blessings to you!