Interesting Office Visit & Present for Sharon

[hdugger]

Yes that's how science works. For example, evolution and a few billion year old earth is "in" and creationism is "out" based on the evidence.

If we had the equivalent of a theory of evolution for scoliosis, I'd be delighted.

Instead, what we have is some pretty foggy notions about the ultimate cause and exactly zero proven methods for restoring a "normal" spine. Instead, what medicine has to offer is a method of permanently deforming the spine in order to make it straight. (And my apologies for the terminology - as a non-scoliosis patient, I know that "normal" and "deformed" are pretty loaded term for me to use, but I don't know how else to clearly express the idea. Know that I am referring to the shape of the spine and not the person.). I'm not knocking medicine - I know that it's doing its best - and I have a son who is more likely then not to have the surgery. But, still, the medical approach to scoliosis is not our shining moment in the sun. It is more akin to stomach stapling for obesity then to setting a broken arm. It's a strong arm method to wrestle the curve out of a spine, and the strong-arming shows.

Given the state of science in this field, it's hard to see how any treatment method, including surgery, can be "in." They're all just varying degrees of "out" and we, patients and family, are searching for "in."

[Pooka1]

Questioning by moderators is useful. Innuendo is not. One of the lines I responded to - "I'm guessing that he's not as popular a surgeon as you've lead us to believe" - was not a fact or a question, but a vieled suggestion that the poster was either uninformed or outright lying. If you're trying to encourage rather then shut down discussion, the approach is to honestly clear the air and state your concerns - "I know that people will be influenced by what a well-regarded SRS doctor says, and I'm a little concerned, based on the information that you've provided, that the specialist you're referring to might not be a well-regarded SRS doctor. Can you help clear that up?"

Yes I see why you are making this point but that exchange has a particular history with claims made but not advanced. I knew why Linda said it because I recall the previous exchange.

OK, not perfect, but you get the point. You give the person (and yourself if, as in this case, the mistake turns out to be your own) a graceful out while still attempting to elucidate information. The innuendo approach suffers from both being less factually clear as well as tending to put people's backs up.

Yes I agree that is best. Equally, there are some here, not talking about Mamamax, who are intractable to facts and reason. What do you do about that? You can give people graceful outs, gently help their understanding, etc. but they continue misleading others. What then?

You're setting up a false dichotomy here. All substance has form. Some form encourages discussion and other form discourages it. Personal invective dampens discussion. That's why scientific articles do not generally start with "That idiot Dr. so and so has his head up his backside." The statement is not useful because it focuses negatively on the individual instead of exploring the topic.

Yes exactly so. Ad homs are the recourse of folks who can't engage the substance. Nobody gets jumped on immediately or should get jumped on immediately. But what do you do with the intractable ones?

Factual information is low in heat.

Completely disagree. Facts are what people MOST object to much of the time. There are people here who are so personally mad about the fact that medicine hasn't solved scoliosis that they think the entire enterprise is rotten and thus look elsewhere (as if any other approach has a better shot).

On this board, topics about anything but surgery are almost *all* heat and very little fact. The form (heat) is stifling the free exchange of ideas and ends up making the topics almost unreadable.

This is a "shoot the messenger" comment. It is not the fault of people pointing out the lack of evidence for conservative approaches that there is a lack of evidence for conservative approaches. In fact "shoot the messenger" is a common theme at this point. Can we agree shoot the messenger is never correct or appropriate?

[Pooka1]

If we had the equivalent of a theory of evolution for scoliosis, I'd be delighted.

Instead, what we have is some pretty foggy notions about the ultimate cause and exactly zero proven methods for restoring a "normal" spine. Instead, what medicine has to offer is a method of permanently deforming the spine in order to make it straight. (And my apologies for the terminology - as a non-scoliosis patient, I know that "normal" and "deformed" are pretty loaded term for me to use, but I don't know how else to clearly express the idea. Know that I am referring to the shape of the spine and not the person.). I'm not knocking medicine - I know that it's doing its best - and I have a son who is more likely then not to have the surgery. But, still, the medical approach to scoliosis is not our shining moment in the sun. It is more akin to stomach stapling for obesity then to setting a broken arm. It's a strong arm method to wrestle the curve out of a spine, and the strong-arming shows.

I agree. I have seen it stated that fusion replaces one condition for another... a curved, flexible spine is replaced by a straight, rigid one. But that's the best, if not only, hope for some. At least a fused spine is stable given a solid fusion.

Given the state of science in this field, it's hard to see how any treatment method, including surgery, can be "in." They're all just varying degrees of "out" and we, patients and family, are searching for "in."

Well I responded to your comments trying to equate the state of surgery and that of conservative treatments and how much data is collected for each in the short and long term. Among other points I made, surgery almost always has a definitive outcome that can be known much sooner so it is inherently a more tractable research subject than any conservative treatment. It is still true to say fusion is the only thing that will stop progression in anything close to a permanent fashion.

[hdugger]

Yes I agree that is best. Equally, there are some here, not talking about Mamamax, who are intractable to facts and reason. What do you do about that? You can give people graceful outs, gently help their understanding, etc. but they continue misleading others. What then?

Given that we don't know where we're going, I'm not certain how we judge whether one is leading or misleading. In all such situations, I'd recommend a bracing dose of humility coupled with alot of "well, what I think is . . " The thing is, we don't seem to have facts of any sort to back up *any* of our opinions. Does bracing work? Beats the hell out of me. Could putting a child in a torso rotation machine work? Could be.

Given the state of our confusion, it doesn't seem that we have many facts with which to tract people. So, again, lots of humility and admission of our own confusion is probably the best way forward. The only situation in which I'd recommend a full frontal assault is when "outsiders seeking money" invade the forum and try to spook people away from their wallets.

Beyond that, we're all just parents and patients trying to do the best for ours. It's pretty difficult not to be overcome with sympathy for everyone here, hence the reason why the harsh tones are so jarring.

[Pooka1]

Could putting a child in a torso rotation machine work? Could be.

Yes it very well could be. So when someone continually comes on here claiming it works every time, without fail, in every patient, and more than one person cautions that poster about the unwarranted certitude, what do you do then? Specifically I mean. Ignore it? Have bunnies mortgaging their house to buy a machine because the moderator didn't zap the post?

[hdugger]

Well I responded to your comments trying to equate the state of surgery and that of conservative treatments and how much data is collected for each in the short and long term. Among other points I made, surgery almost always has a definitive outcome that can be known much sooner so it is inherently a more tractable research subject than any conservative treatment. It is still true to say fusion is the only thing that will stop progression in anything close to a permanent fashion.

Yes, surgery has studies, but it definitavely does not restore a normal spine (nor does it claim to) and it brings its own set of risks and long-term complications. That makes it well-studied but "out". Compare it to effective medicine, like antibiotics for an infection, to see just how far "out" it is. It's "in" only in the sense that the alternative (not treating a seriously progressing spine) is even further "out". But it certainly is not the kind of "simple fix" that would shut down all further discussion about other treatments.

That leaves us searching for "in" - something that actually works. I would hope that we'd be able to stop slugging it out for long enough to focus on that.

[Pooka1]

Yes, surgery has studies, but it definitavely does not restore a normal spine (nor does it claim to) and it brings its own set of risks and long-term complications. That makes it well-studied but "out". Compare it to effective medicine, like antibiotics for an infection, to see just how far "out" it is. It's "in" only in the sense that the alternative (not treating a seriously progressing spine) is even further "out".

Yes I agree. And I bolded a sentence that made me laugh out loud. I'm still giggling actually. Well put!

But it certainly is not the kind of "simple fix" that would shut down all further discussion about other treatments.

No. But I contend a near-perfect vacuum of evidence for decades and decades in some cases for any of these other treatment options should shut down claims of efficacy though not discussion. Neither Linda, not Pam nor anyone has said conservative treatments are useless. They are clearly useful for pain. To date, they have not been shown to permanently halt progression or permanently reduce curves. If pointing out that fact is shutting down discussion then I don't know what else to say. Hope springs eternal.

And the fact that surgery is not an ideal solution doesn't automatically make conservative treatments magically better. Rather they must pony up their own evidence and sink or swim on the merits of that, not of teh vagaries of surgical solutions.

That leaves us searching for "in" - something that actually works. I would hope that we'd be able to stop slugging it out for long enough to focus on that.

It is my hope that folks back claims up with evidence.

[hdugger]

Yes it very well could be. So when someone continually comes on here claiming it works every time, without fail, in every patient, and more than one person cautions that poster about the unwarranted certitude, what do you do then? Specifically I mean. Ignore it? Have bunnies mortgaging their house to buy a machine because the moderator didn't zap the post?

I have that question about lots of posts, though. There are people who post that surgery cures pain and that anyone who isn't getting surgery is wasting precious time. On the other side, there are people who strongly suggest that bracing doesn't work, thus discouraging people for whom it might be an effective strategy. The answer is, we just don't know, and it's likely that some stupid remark we make may damage someone else. Heady stuff, but what are you going to do? The best you can do is put lots of posts around the forum reminding people of that fact. Maybe we ought to be required to put it in our sigs "I'm lost, don't follow me!"

But, in any case, it's certainly not a problem linked to one poster or one opinion. The forum is rampant with overconfidence for such a fuzzy field. A HUGE dose of humility dust scattered liberally would help!

[Pooka1]

I have that question about lots of posts, though. There are people who post that surgery cures pain and that anyone who isn't getting surgery is wasting precious time.

Haven't noted that. Surgery can cure pain. Nobody who knows what the heck they are talking about claims it is guaranteed to do so, though.

On the other side, there are people who strongly suggest that bracing doesn't work, thus discouraging people for whom it might be an effective strategy.

I am careful to say it hasn't been shown to work. Big difference from what you wrote.

Folks know it but they have to show it.

The answer is, we just don't know, and it's likely that some stupid remark we make may damage someone else. Heady stuff, but what are you going to do? The best you can do is put lots of posts around the forum reminding people of that fact. Maybe we ought to be required to put it in our sigs "I'm lost, don't follow me!"

But, in any case, it's certainly not a problem linked to one poster or one opinion. The forum is rampant with overconfidence for such a fuzzy field. A HUGE dose of humility dust scattered liberally would help!

Careful wording always and I am not talking about form here.

I mean not claiming more for a treatment modality than the evidence supports.

[mamamax]

It's been 24 hours since I posted/shared my office visit with my surgeon yesterday. The good looking one from Egypt, the non-SRS guy. He is in a practice that I have been seeing for the last five years. When I leave from one of our visits, it is with hugs - and we have established a rapport that may be considered less than clinical by some - he and I speak with each other more as two old friends than superior medical doctor and intellectually inferior lay patient. I do value greatly our relationship and his professional opinion.

I was thinking today about the comments both he and the SRS surgeon have made to me. The SRS surgeon is the one who cautioned me to understand that going on disability following surgery may be a possibility I should prepare for. My Egyptian, a bit more candid. Why would someone receive such a diagnosis in a world where surgery seems to be so commonplace, and worthwhile? Maybe it is because their patient, at 60, may not be an excellent candidate for surgery, and in fact may spend the majority of life that is left in difficult recovery, the stress causing other medical conditions in an aging patient with no other medical conditions outside the obvious scoliosis. What real need would there be of this when quality of life today is better than it was a little over a year ago? So long as present curvature remains stable. Next visit I'll ask my beautiful Egyptian for more specifics to satisfy the curiosity that has peaked as a result. I have a feeling it will have something to do with weighing risks and benefits for me personally - and not necessarily according to published studies.

I'm not sure I understand why moderator innuendo was necessary as a response to my posting yesterday. Nor do I pretend to understand the out right hostile attack from Pam. Neither represent the goals and purposes established for this patient led forum, which is designed to: allow patients, parents, and family members to communicate and receive support in an open environment that shows courtesy and respect for all, by everyone (These are not my words, but the words of the founder, Joseph O'Brien).

And the end of the day - reading through all the posts, I want to thank ToniBunny again for showing the compassion that great forum discussion and leadership is made of, Sharon for understanding the one bright spot in the day and knowing that my mentioning of it was not some passive/aggressive attempt to invite hyper aggressive responses - and maybe most of all, hdugger who has so eloquently said (about the true spirit of Scoliosis forum support):

We seek out these forums in the most fragile periods of our lives, concerned for our children or ourselves, full of pain and fear. It's not really the time for flamboyant self-expression.

Each little "gotcha" post turns away someone who wants to ask a question. And the preponderance of "gotcha" posts in certain topics makes it almost impossible to freely explore ideas - it's as if there were little mine fields everywhere. At a time when we most need the freedom to explore ideas, the minimal job of a moderator is to clear the minefield and make discussion possible.

I don't expect everyone to behave - it's a trying time, people are in pain, and frankly feeling bitchy and at wits end. But I would press upon you the image of walking into a waiting room and seeing people waiting for reports for their child/love one/self, and then decide what tone is appropriate.

The last sentence above - perhaps the most profound.

I have greatly enjoyed the conversation between Sharon and hdugger - much food for thought (and Sharon, LOVE your new signature!).

Spinecor brace adjustment today. A much more enjoyable office visit - will post in the next day or two.

[Pooka1]

It's been 24 hours since I posted/shared my office visit with my surgeon yesterday. The good looking one from Egypt, [...]

I agree there is evidence swarthy men are attractive.

[...] and maybe most of all, hdugger who has so eloquently said (about the true spirit of Scoliosis forum support):

I am beginning to suspect you like dhugger better than me and Pam and even Tonibunny. I realize she is smart and stuff but we are trying.

(and Sharon, LOVE your new signature!).

It's plagiarized.

Spinecor brace adjustment today. A much more enjoyable office visit - will post in the next day or two.

I certainly hope you are finding whatever relief you seek.

[hdugger]

I am careful to say it hasn't been shown to work. Big difference from what you wrote.

Sorry, I wasn't try to obliquely call you out - I'm not all that oblique - but I have heard stronger statements against it.

Even the more cautious statements mark a departure in the normal party line about doctor's recommendations (and I've been part of those cautious statements as well). Anyway, what we normally say to anyone asking about anything is "you should do what your doctor recommends." Lots of these doctor recommendations aren't based on sound science - how long exactly, for example, should you avoid twisting after surgery - but we defer to the doctor pretty much on all counts.

Except, that is, when someone comes in whose doctor has recommended bracing. And then, suddenly, we're all over the thread, dragging out our rusty studies and parsing numbers.

Again, I've done it a few times, but I think it has the overall effect of discouraging patients from bracing. Why is it, again, that we think we know more then their doctor in this one instance? How can their doctors be fit to make all other decisions regarding their treatment, but suddenly less trustworthy then our highly speculative guesses in this one instance?

I don't at all mean that we can't discuss the topic, but it does seem like an odd way to greet some newcomer who's come in with some simple questions about the bracing that their doctor recommends.

I mean not claiming more for a treatment modality than the evidence supports.

Yes, that's what I mean too. I see lots of posts that would fall into that category, especially given the state of the evidence. It's not at all limited to Dingo's enthusiasms.

[Pooka1]

Yes, that's what I mean too. I see lots of posts that would fall into that category, especially given the state of the evidence. It's not at all limited to Dingo's enthusiasms.

Yes but some raise it to symphonic levels.

[txmarinemom]

Mamamax,

Could you explain what is is about your ±52 curve that would require (possibly) 3 surgeries, and what would you - or your doctor - qualify as "A LOT of thoracolumbar rotation"?

I don't think I'm a rarity when I say of all the pain management doctors I've seen (over all the years), I've never had one who attempted to measure my Cobb. It just isn't within their scope. I wish I could convey to you - without twisting your knickers further than they already are - just how alarming what you said you were told by this doctor comes across to some of us.

Why would surgery on a relatively small curve put you in a wheelchair (according to your "beautiful Egyptian")? How exactly were your issues "that come with being well seasoned - degenerative disc disease, some arthritis and a few other things I don't know how to spell" diagnosed?

Regardless of how you perceive my intentions here, I'm concerned you aren't getting proper care, and I'm worried it doesn't seem to bother you.

Don't you find a diagnosis of a "really really really bad back" concerning?

That isn't "lay", Maxene ... that's a pat on the head.

Regards,
Pam

[LindaRacine]

I have that question about lots of posts, though. There are people who post that surgery cures pain and that anyone who isn't getting surgery is wasting precious time. On the other side, there are people who strongly suggest that bracing doesn't work, thus discouraging people for whom it might be an effective strategy. The answer is, we just don't know, and it's likely that some stupid remark we make may damage someone else. Heady stuff, but what are you going to do? The best you can do is put lots of posts around the forum reminding people of that fact. Maybe we ought to be required to put it in our sigs "I'm lost, don't follow me!"

But, in any case, it's certainly not a problem linked to one poster or one opinion. The forum is rampant with overconfidence for such a fuzzy field. A HUGE dose of humility dust scattered liberally would help!

If you see anyone posting that surgery cures pain, please report it. There is clearly a difference between posting one's experience and posting non-facts like "X brace stops curve progression" or "surgery cures pain."

By the way, I bet I can find a dozen of my posts discouraging people from surgery for every one you find encouraging someone to have surgery. You're seeing what you want to see.