Scoliosis stories wanted

[bas2101]

Hello,

My daughter was diagnosed with scoliosis at the age of 7. She is now 13, and undergoing physical therapy 5 days a week, along with being braced full time. We have turned to bracing, along with "alternative" therapies over the last 6 years as a way to hopefully avoid surgery-even when it was advised by several orthopedists that we were making poor decisions.

I am also a writer, and am currently writing a piece on scoliosis and patients' and parents' experiences/stories with alternative therapies-even when the orthopedists advised against it. I am also interested in patients who have had surgery after trying alternative treatment that had failed. This piece is not going to be published, but rather will be used for graduate school. If I intend to publish it in the future, I would keep all privacy needed.

Ideally I am looking for stories/experiences from those living in the NYC area, but will welcome anyone willing to share.

Thank you so much.
B.Smith

I can also be reached at bas2101@columbia.edu

[Pooka1]

Okay I see.

But how can a bunch of nonscientific anecdotes constitute research?

If clinicians and scientists in this field are hard-pressed to publish meaningful studies on mainstream treatment modalities, what can you add, even just as a graduate school thesis/dissertation, about alternate treatments that the purveyors of said treatments can't add themselves?

I'm not trying to discourage you. I'm just wondering about what you hope to accomplish.

[bas2101]

First of all, I am not a scientist, nor do I claim to be such-I am a writer.
I am interested in people's stories, which I am writing as a non-fiction piece, not a medical research paper. There are many people out there who have defied the norm, with encouraging results-even if such cases are not scientifically documented, or even if such cases are documented as a single case study. Nevertheless, I am not just interested in stories that have gone against the "norm," but rather, the paths that scoliosis patients are taking or have taken-even if the result is surgery. I am not against surgery, or the medical research that exists. I am however discouraged with the orthopedists' unwillingness to offer next to nothing in the way of options while we watch and wait for our children to get worse. I am not trying to re-write the scoliosis paradigm, just write a piece showing what patients are trying and the obstacles they face while they are dealing with their condition. And while you may not believe that this could contribute anything new, I do-so do the many people who have been willing to share with me over the last several months.

[christine2]

I would love to share my familys story with you. We have made great sacrifices in order to try to treat my daughters scoliosis. I am limited on time so a phone interview would be less time consuming. You may PM me so we can touch base privately.

[txmarinemom]

First of all, I am not a scientist, nor do I claim to be such-I am a writer.
I am interested in people's stories, which I am writing as a non-fiction piece, not a medical research paper.

Pardon my ignorance, but how do you intend to write about something you don't know ... and as Sharon mentioned, based on anectoctal accountings?

Do you know anything about the newer scoli treatments? I think you may be over your head.

[bas2101]

Since I have been dealing with my daughter's scoliosis for the past six years, I can say that I KNOW the subject of scoliosis very well . And, YES, I know about the newer scoliosis treatments, as over the last several years I have been to 4 well regarded orthopedic surgeons who have explained their procedures to me IN DETAIL, in addition to following the research literature regarding conservative and surgical treatments on my own time.

And, how do I intend to write about something "based on anectoctal accountings?" With dignity and respect to those who want and need their stories told. People's stories regarding their journey with scoliosis is as important as the scientific research available, as clearly it is half of "the story," and for the most part, is missing from available literature.

I am curious as to why you feel the need to demean my efforts, and frankly many of those who visit this site. Remaining open-minded is the only way in which we can accept and respect the differing ways in which others are dealing with their scoliosis, as it is obvious that no two patients follow the same path-surgery or not. I thought that this forum was a chance to do that, not a place to showcase arrogance and intolerance.

[Pooka1]

Since I have been dealing with my daughter's scoliosis for the past six years, I can say that I KNOW the subject of scoliosis very well . And, YES, I know about the newer scoliosis treatments, as over the last several years I have been to 4 well regarded orthopedic surgeons who have explained their procedures to me IN DETAIL, in addition to following the research literature regarding conservative and surgical treatments on my own time.

I suspect you do know a lot at this point. But that only makes your collecting anecdotes even more curious.

And, how do I intend to write about something "based on anecdotal accountings?" With dignity and respect to those who want and need their stories told. People's stories regarding their journey with scoliosis is as important as the scientific research available, as clearly it is half of "the story," and for the most part, is missing from available literature.

That would be a contribution if you clearly state that these are anecdotes and mean nothing to the science of the situation, especially the paranormal treatments. The danger is HUGE that desperate people are going to read your work and get false hope or try some nutty approach that wastes time and money.

For me, the science is 110% of the story. The human interest angle can't be qualified enough for me. It is less than useless to me in my trying to find the best care for my daughters.

I am curious as to why you feel the need to demean my efforts, and frankly many of those who visit this site. Remaining open-minded is the only way in which we can accept and respect the differing ways in which others are dealing with their scoliosis, as it is obvious that no two patients follow the same path-surgery or not. I thought that this forum was a chance to do that, not a place to showcase arrogance and intolerance.

Open-minded is one thing. A lay person writing about uncontrolled experimental and random outcomes, especially of paranormal treatments, in a strictly anecdotal fashion is too dangerous in terms of falsely raising the hopes of desperate people in my opinion.

YMMV.

[Pooka1]

Perhaps I can show you some examples from your own writing that are already biased and where you might claim not to try to be doing science, you really are trying to do so...

First of all, I am not a scientist, nor do I claim to be such-I am a writer.
I am interested in people's stories, which I am writing as a non-fiction piece, not a medical research paper. There are many people out there who have defied the norm, with encouraging results-even if such cases are not scientifically documented, or even if such cases are documented as a single case study.

Okay see here you seem to have concluded that the encouraging results were due to "defying the norm." Without a controlled study, you simply can't know or say that. You then go on to pooh-pooh scientific documentation as perhaps being unnecessary to make this case.

There seems to be great danger in someone reading you paper and seeing some random person thinks they were cured with bat guano or something and then go out and waste their time/money on bat guano.

Nevertheless, I am not just interested in stories that have gone against the "norm," but rather, the paths that scoliosis patients are taking or have taken-even if the result is surgery. I am not against surgery, or the medical research that exists. I am however discouraged with the orthopedists' unwillingness to offer next to nothing in the way of options while we watch and wait for our children to get worse.

"Unwillingness?" Do you think they have all these effective treatments that they are simply unwilling to share with desperate patients? Don't you think that if watching and waiting was known to be dangerous then all these orthopods would be sued out of existence by now?

Do you see how you have a strong bias in your wording and how that might be dangerous to desperate folks?

I am not trying to re-write the scoliosis paradigm, just write a piece showing what patients are trying and the obstacles they face while they are dealing with their condition. And while you may not believe that this could contribute anything new, I do-so do the many people who have been willing to share with me over the last several months.

I think what you are planning needs to be qualified at every turn saying that it is non-scientific, random, anecdotal, and has no bearing on the outcome of any other case. Unfortunately, even if you do that, there are still going to be plenty of desperate people who will try something just because someone you interviewed thought (not proved) it worked for them. Lay folks talking to lay folks is the blind leading the blind, sorry to say.

There is a reason science is done in the way it is done. Just taking one issue, the lack of a control group makes a huge swath of the scoliosis literature worthless and results in wildly overestimated success rates for bracing.

[bas2101]

As I stated in a previous post, I am not writing scientifically documented research. Although, I do not believe that people's experiences in regards to such research can be separated from the research itself. Scientifically documented research is telling the story from the scientists/physicians point of view only. "Western Science," like any science is a dogma, not universal law. And, like any science, it has its loopholes, errors, politics, one-sided viewpoint etc. Especially in the case of scientific research that attempts to make qualitative assessments in regards to issues like pain, self-esteem, quality of life, and any other subjective matter. For example, filling out a little circle with a number #2 pencil can in no way determine the quality of someone's life, pain, esteem, future, etc., despite that this is used in some documented "scientific research."

Am I devaluing Western medicine and the progress of research thus far? No. I am simply questioning it, and would hope that anyone else would do the same when it involves their life. Telling people's anecdotal stories is in no way any more dangerous than being left with nothing in terms of what to do for scoliosis except to comply with the standard "watch and wait," brace, or surgical options. It is no more dangerous than leaving someone out there to the victimization of both alternative scams that pry on patients' desperation and surgeons who refuse to explore other options.

I assume that when you decide upon a treatment for your daughters, you first speak to others who have already gone through such treatment, surgery or otherwise. Such advice/opinions/side of the story is anecdotal.

Again, I am telling people's stories, which I assume will include stories revolved around "uncontrolled experimental and random outcomes" in addition to stories that reflect documented scientific research. Dangerous is being uninformed in any form of treatment. Dangerous is taking one person's or one paradigm's word at face value.

[bas2101]

In response to your later post:

When I referred to "scientific documentation" I was referring to it in the sense of it being documented in the literature, not the absence of the use of science whatsoever. I believe that is not imperative to have scientifically documented literature in order to "defy the norm" of a paradigm, although I do believe that it unfortunate. If a scoliosis patient has success and it is not scientifically documented in the literature, that does not mean that their success did not happen, or has no value-these are some such stories that I have found and may continue to find. And, I am not talking about bat guano therapy, or whatever that is, I am talking about people who have had their curves reduced as PROVEN by their x-rays (and I am not talking about those within the margin of error), as well as people whose x-rays may have remained the same or worse, but whose quality of life has improved (according to THEM).

And, although I am not writing my research as a scientific document, or medical paper in the western sense, of course there will be scientific documentation used within my paper; x-ray results, MRI's, growth, chest expansion, pulmonary function and so on. I am not trying to tell just one side of the story, mind you. I will be including stories of those who have had surgery and those who have not. I am very well aware that many therapies out there are bunk, and waste people's time and money...only for them to need/want surgery in the end. I am also aware that there are many people out there who choose surgery as their first choice of treatment, and that it is successful for them. But regardless of one's choice , I believe that there is great danger in anyone believing that anything offered whatsoever can cure their scoliosis.

I do not believe that orthopedists are unwillingly withholding valuable information from patients, but I do believe that in general there is an unwillingness for them to explore other options, aside form the standard three.

I most certainly will make clear any and all disclaimers necessary for any paper that I write, on scoliosis or otherwise.

I will not just be speaking with "lay folk," but also professionals in the field.

[Pooka1]

As I stated in a previous post, I am not writing scientifically documented research.

I realize that is your intention. But your rhetoric ("unwilling" doctors, claimed success from paranormal approaches, etc.) edges dangerously close towards making scientific conclusions absent any evidence.

There is a McClean's article that is posted here from time to time written by a lay person that is riddled, shot-through, etc, with scientific inaccuracies. That is the danger of lay folks thinking they can write about this stuff. How can you be sure your piece won't be similar?

In fact lay folks CAN write about this stuff if they do the necessary reading and have the piece reviewed by at least three professionals. It takes rigorously removing the biased that aren't scientifically supported (see examples above from your own writing).

Although, I do not believe that people's experiences in regards to such research can be separated from the research itself. Scientifically documented research is telling the story from the scientists/physicians point of view only. "Western Science," like any science is a dogma, not universal law.

The scientific method is the very opposite of dogma. It is a system of inquiry that is self-correcting. Science is the one field where you can actually get points for pointing out errors in your OWN thinking and previous research. It is an open-minded, controlled way forward that is literally the only game in town for weeding out false claims that hopefully leave the "truth" as the last thing standing.

"Universal laws" exist when all the evidence points to "A" and none points to"B" or anything else but is still technically provisional. Medicine in general, and scoliosis research in particular, include an art term and seem to encompass such large variation such that the only hope for figuring it out is large, controlled studies. And even then, more work in required to determine which cases will progress to what point and which won't. The next step is to rigorously test which, if any, of a the treatments are effective. It's a long road.

The fact that western medicine hasn't yet nailed this is not a reason to turn to non-western medicine as if that must hold promise simply because western medicine hasn't yet cracked this nut. That seems to be a cherished premise of yours.

ETA: You are setting up a false dichotomy which is a common logical error in thinking. It's the same error creationists make when they think they have disproven evolution that then therefore creation is true. Well, evolution (change over a few billion years) is a fact and therefore they haven't disproven it. But let's say the main mechanism of evolution (natural selection) is shown to not be the correct. In that case, it will be replaced by another SCIENTIFIC theory, NOT a religious dogma. False dichotomy.

And, like any science, it has its loopholes, errors, politics, one-sided viewpoint etc.

Am I devaluing Western medicine and the progress of research thus far? No. I am simply questioning it, and would hope that anyone else would do the same when it involves their life.

Western medicine has more successes than you can even imagine. And questioning it is essential but only when done by folks who are in a position to correctly falsify a provisional claim, not by random lay folks who don't understand the value of the scientific method which is literally the only game in town.

[Pooka1]

I do not believe that orthopedists are unwillingly withholding valuable information from patients, but I do believe that in general there is an unwillingness for them to explore other options, aside form the standard three.

What do you base this on? It sounds completely unfounded? What is the evidence for this claim?

ETA: If medical researchers don't pursue paranormal treatments then you can't criticize them. They are simply being scientists.

If there was any evidence, even totally empirical, for any paranormal treatment then it would fall into "medicine" and not "woo-woo."

For example, as I understand it, scientists really don't know why Lithium works for manic depression. But we can still know it works empirically through controlled studies using the scientific method. So that is "science." Chiropractic, for example, has had decades and decades to prove certain claims and still they remain unproven. That is "woo-woo."

See the difference?

There is no a priori resistance to chiro among medical researchers. The resistance is due to the TOTAL and COMPLETE vacuum of evidence that it works for certain conditions.

[bas2101]

We all have bias in our writings to some degree, as do you. I highly doubt that you have never considered any anecdotal feedback, even 1%, when making decisions for your daughters, even though you claim that you adhere to science 110%. As I said previously, I find it impossible to separate scientific documentation/evidence from anecdotal evidence.

My rhetoric never included "paranormal approaches," you are merely interpreting it this way.

Actually, "scientific method" is dogma like any other form of body of knowledge. And, it tends to marginalize other such dogmas, thus making it anything but "open-minded." Throughout history, even science has admitted itself wrong on numerous occasions. But, clearly we differ on this, and to each her own.

I agree that scoliosis treatment needs further and constant research-and that the journey to finding a more absolute treatment is a long way ahead of us. I am not sold that non-western medicine is THE approach to scoliosis treatment, but I don't deny that it is important to explore it further. I never said that non-western medicine "must hold promise," or that it is a "cherished premise" of mine, but I will not ignore its potential. I personally believe that the best way to research scoliosis, or anything for that matter, would be to converge the knowledge of both western and non-western approaches, as to reduce the chance at leaving anything unturned.

Questioning scientific research only by those already a part of its paradigm, is the epitome of bias. I suppose then that every "lay folk" on this site should not question their orthopedic simply on the basis that they are "lay folk." Sorry, I was raised to think for myself and will never agree with this. Yes, I will listen to an orthopedist's opinion, as I will the opinions of others in regards to scoliosis treatment. In the end, I will question all of it, whether I am a "lay folk" or not...and I am sure that most people reading this would do the same.

I have to go...

[Pooka1]

My rhetoric never included "paranormal approaches," you are merely interpreting it this way.

Here are some quotes from your first post...

"We have turned to bracing, along with "alternative" therapies over the last 6 years as a way to hopefully avoid surgery-even when it was advised by several orthopedists that we were making poor decisions."

"I am also a writer, and am currently writing a piece on scoliosis and patients' and parents' experiences/stories with alternative therapies-even when the orthopedists advised against it. I am also interested in patients who have had surgery after trying alternative treatment that had failed."

If you don't mean "paranormal" when you say "alternative" then what exactly do you mean?

[bas2101]

The term "alternative" is not synonymous with "paranormal," although paranormal could fall under alternative, so I see your point.

By "alternative," I mean treatments that are not part of the mainstream standards of orthopedists; "wait and watch," bracing, surgery. This could potentially include "paranormal" approaches, but it can also included approaches outside of the mainstream that have scientific basis. I understand that the term "alternative" can fall within a gray area.

Have a good day, I have to get outside.