Who Decides?

[Pooka1]

Originally Posted by bas2101

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]

Originally Posted by bas2101

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]

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]

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]

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]

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]

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]

Originally Posted by concerned dad

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]

Originally Posted by bas2101

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?

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]

Originally Posted by Ballet Mom

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.

Originally Posted by Ballet Mom

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.

Originally Posted by Ballet Mom

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]

Originally Posted by concerned dad

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]

Originally Posted by Pooka1

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]

Originally Posted by concerned dad

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]

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]

I agree with everything in Ballet mom's post above, especially the points about (most) chiros.

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.