Interesting Office Visit & Present for Sharon

[mamamax]

As someone with scoliosis (surgically untreated), pain management has become an issue as I age. Last year the pain was so sever (from the moment I would get out of bed in the morning) that I consulted with an SRS surgeon about possible surgery. I was told that my spine could be straightened and that it would take two, possibly three operations to do this. And that if I elected surgery, that I should prepare for the possibility of going on disability. I struggled with that information and decided to give Spinecor a try first, in April of this year. I'm very glad I did, I no longer wake up in pain. I've been able to cut my pain medication in half - and often don't need it at all - as long as I can pretty much move throughout the day at my own pace. At the same time - while I can do more physically, in the course of doing more, I will still sometimes experience pain - albeit the pain is localized in just one area as opposed to my entire back .. hence I still see another surgeon in the same practice as my SRS surgeon, for pain management.

I adore the specialist that I see for this. He's from Egypt - fantastic looking :-) patient with all the questions I have and very informative. I've been feeling some fatigue. A urinalysis was ordered to make sure I'm metabolizing the medication ok - seems fatigue can be a sign of not doing so because the liver is compromised.

Anyway, in the course of today's visit, I was told I had a really really really bad back. Love it when I'm talked to in lay terms I can understand :-) He said my back is so bad that if I did have surgery that I would probably end up in a wheelchair (he said shrugging his shoulders). Ironically I was told 40 years ago, that if I didn't have surgery I would end up in a wheelchair by age 50. He also said that even though I can do more before feeling pain - that I shouldn't because I could cause damage to my spine. No more washing my own car he said - and that I should find a way to have others do anything possible, like laundry and grocery shopping. He said this is how he would advise his own sister (was happy he didn't say grandmother).

My cobb angles are not all that bad - started with the largest of two at 52 degrees left (46 out of brace last Spinecor xray). And fortunately my heart and lungs are not compromised. A LOT of thoracolumbar rotation though. And of course all the things that come with being well seasoned - degenerative disc disease, some arthritis and a few other things I don't know how to spell. I find it curiously odd that even with the vastly improved instrumentation of today, that surgery is not my best option, given my condition.

I find myself pondering tonight. What if I had surgery 40 years ago, with near antiquated instrumentation by now - I would still have had the degenerative disc disease and all the rest of the fun aging stuff by now. Where would I be? Back to square one with pain management? I don't know.

Brace adjustment tomorrow - returning to my specialist in three months for the yearly xray check.

Here's my present for you Sharon - I remember you saying that you would pay to see two independent people measure the same xray and come up with the same cobb angles. I asked my specialist to pull out the xrays from a few days before being fitted with my brace. As you know my spinecor provider took before brace xrays ... both measurements, that of the surgeon and my spinecor provider are: the same! The office visit today was not all that uplifting until that point - Is this close enough to put the check in the mail?

[jrnyc]

Hi mamamax
i read your post with interest...am wondering why the medical people describe your back in such extreme terms...i, too, have scoliosis, with rotation, spinal stenosis, degenerative disc disease, & severe arthritis in my spine...yet i was told by 3 of the top scoli surgeons in nyc (including dr boachie)that i could be operated on successfully with one operation (possibly divided into 2 days for anterior/posterior approach...so maybe that is 2 operations, i dont know)...i have never heard or had a doctor quoted as saying that a wheelchair would be the result after surgery, especially with today's improved instrumentation & techniques...?! all the doctors did say that i would need fusion to the sacrum due to degeneration of discs, but none suggested in any way that i would end up in some way completely dysfunctional..to the contrary...they all seemed to feel that i could have a fully functional life, should i decide on the surgery....

i just wonder why or how your situation is/got to be so extreme...?

i wish you the best...& continued success with the results you have been getting with bracing!

best regards
jess

[mamamax]

Hi jrnyc - to answer your question, I don't know ... but I think this is just another illustration of how one diagnosis can vary from specialist to specialist. I think we have seen that a lot in forum here.

I've heard the wheelchair word more than once .. the first time 40 years ago. It didn't happen, although the pain levels were unreal by age 59. And my surgeon today was being very candid in his opinion - and I noted used the word "probably" not "certainly" ... he was voicing his opinion based on his experience, and advising me as he would his sister.

If I were mega wealthy I'm sure I could fly around the world and get opinions more to my liking.

Thank you for your well wishes - never thought I'd be like a poster child for adult bracing :-)

[LindaRacine]

As someone with scoliosis (surgically untreated), pain management has become an issue as I age. Last year the pain was so sever (from the moment I would get out of bed in the morning) that I consulted with an SRS surgeon about possible surgery. I was told that my spine could be straightened and that it would take two, possibly three operations to do this. And that if I elected surgery, that I should prepare for the possibility of going on disability. I struggled with that information and decided to give Spinecor a try first, in April of this year. I'm very glad I did, I no longer wake up in pain. I've been able to cut my pain medication in half - and often don't need it at all - as long as I can pretty much move throughout the day at my own pace. At the same time - while I can do more physically, in the course of doing more, I will still sometimes experience pain - albeit the pain is localized in just one area as opposed to my entire back .. hence I still see another surgeon in the same practice as my SRS surgeon, for pain management.

I adore the specialist that I see for this. He's from Egypt - fantastic looking :-) patient with all the questions I have and very informative. I've been feeling some fatigue. A urinalysis was ordered to make sure I'm metabolizing the medication ok - seems fatigue can be a sign of not doing so because the liver is compromised.

Anyway, in the course of today's visit, I was told I had a really really really bad back. Love it when I'm talked to in lay terms I can understand :-) He said my back is so bad that if I did have surgery that I would probably end up in a wheelchair (he said shrugging his shoulders). Ironically I was told 40 years ago, that if I didn't have surgery I would end up in a wheelchair by age 50. He also said that even though I can do more before feeling pain - that I shouldn't because I could cause damage to my spine. No more washing my own car he said - and that I should find a way to have others do anything possible, like laundry and grocery shopping. He said this is how he would advise his own sister (was happy he didn't say grandmother).

My cobb angles are not all that bad - started with the largest of two at 52 degrees left (46 out of brace last Spinecor xray). And fortunately my heart and lungs are not compromised. A LOT of thoracolumbar rotation though. And of course all the things that come with being well seasoned - degenerative disc disease, some arthritis and a few other things I don't know how to spell. I find it curiously odd that even with the vastly improved instrumentation of today, that surgery is not my best option, given my condition.

I find myself pondering tonight. What if I had surgery 40 years ago, with near antiquated instrumentation by now - I would still have had the degenerative disc disease and all the rest of the fun aging stuff by now. Where would I be? Back to square one with pain management? I don't know.

Brace adjustment tomorrow - returning to my specialist in three months for the yearly xray check.

Here's my present for you Sharon - I remember you saying that you would pay to see two independent people measure the same xray and come up with the same cobb angles. I asked my specialist to pull out the xrays from a few days before being fitted with my brace. As you know my spinecor provider took before brace xrays ... both measurements, that of the surgeon and my spinecor provider are: the same! The office visit today was not all that uplifting until that point - Is this close enough to put the check in the mail?


Well, you've now given us plenty of clues (area of Florida, ethnicity, and good looking) as to who your surgeon might be, and I still can't figure it out. I have photos of all the active SRS members. I'm guessing that he's not as popular a surgeon as you've lead us to believe.

I've talked to hundreds, maybe thousands, of adult scoliosis patients. I can't remember anyone ever telling me that their specialist told them that surgery would result in the patient being wheelchair bound. I would question this surgeon's skill therefore.

What makes you think that you'd have DDD for certain? While the probability is high (with or without surgery), there's no guarantee.

[tonibunny]

Mamamax, it is great that you're having such good pain relief from the Spinecor. Sometimes I wish I could get hold of one myself (as a post fusion patient with residual curves of 45/35), it looks very comfy and supportive :)

The wheelchair thing has always struck me as something that can be used to influence patients by either scaring them into having surgery, or scaring them from having surgery. It's so emotive. Back in the 1970s kids were routinely told that they WOULD end up in a wheelchair if they didn't have the surgery, and these days I've seen surgeons appear to dissuade people with minimal curves who are keen on having surgery for cosmetic reasons by emphasising the risks.

Most people assume that "ending up in a wheelchair" means that they would probably end up with some degree of paralysis. In reality, I know several people with extremely severe uncorrected JIS and AIS of over 150 degrees, and none of them are wheelchair users for this reason. They do have very poor respiratory function and some rely on oxygen, which severely curtails their movements; I think that it is probably this, and pain, rather than paralysis that would force people with unfused scoliosis into a wheelchair.

It's a horrible thought :( Thankfully some of the people I know with curves of this magnitude have had successful surgery in recent years, which has kept them from needing oxygen and has definitely preserved their quality of life.

[mamamax]

Well, you've now given us plenty of clues (area of Florida, ethnicity, and good looking) as to who your surgeon might be, and I still can't figure it out. I have photos of all the active SRS members. I'm guessing that he's not as popular a surgeon as you've lead us to believe.

I've talked to hundreds, maybe thousands, of adult scoliosis patients. I can't remember anyone ever telling me that their specialist told them that surgery would result in the patient being wheelchair bound. I would question this surgeon's skill therefore.

What makes you think that you'd have DDD for certain? While the probability is high (with or without surgery), there's no guarantee.

Hi Linda - nice to see you :-) and happy belated birthday!

The pain management surgeon (from Egypt) is not the SRS surgeon. The SRS surgeon said I should prepare for the possibility of going on disability - the pain management surgeon (from Egypt) was offering a candid opinion based on his experience which no doubt is not on the same level as the SRS surgeon.

I don't know how popular my SRS surgeon is but no one has ever said anything bad about him here. The not-SRS surgeon said I had DDD - we're talking degenerative disc disease right? Anyway I would hope he's qualified to diagnose that.

I have had to hear the wheelchair word more than to my liking. 40 years ago in Virginia - a little over 10 years ago in Columbia Missouri (SRSs) ... both of those times as a prognosis if I didn't have surgery - then today if I did. Freaked me out.

[txmarinemom]

I guess I just have a few observations:

- What did you really hope to achieve by basically titling your post "So take THAT, Sharon"?

- "Really, really, really bad back ... " ... "so bad that ... "?

I'm having a tough time imagining a competent doctor - PM or ortho - using those terms - and admittedly, it negates his competence in my mind. I'm doubtful (with those vocabulary limitations) he's qualified to reliably comment on your Cobb. I'd say proceed at your own risk.

Bottom line? He may share office space with the proclaimed SRS surgeon, but he is ... not one.

We're back to apples to apples (vs. oranges) again.

- For someone who repeatedly regurgitates research refs, I'm surprised you might not know how to spell a few things about your own body. Mimic isn't a talent of all that much use; real knowledge IS.

- You're the first one to play innocent, calling for camaraderie (like in Dingo's "Torso Rotation" thread) when you dig yourself in a hole. You're also the first to persist in the smarmy, (not even) thinly veiled hostility in your posts. Look back at you questioning Sharon how she behaves in her professional life (which, I have no doubt, is as factual as here), and you're doing that grandmotherly thing with the "Certainly you know that ..." and "Glad you understand that ..." when no one agreed with you at all.

That's passive-aggressive behavior to a tee. You're all good until someone tilts your applecart ... and it has a wonky wheel *anyway*, sister.

Has it occurred to you, in all your "well-seasonedness" that *maybe* if you didn't behave a certain way, people might respond to you differently?

I'm surprised you only now mentioned today's appt. with all the other posting you did.

Regards,
Pam

[mamamax]

Pam

My comment to Sharon was in jest - trying to find some humor in this day. It was nice to see the same readings. I don't think Sharon would have taken offense -

Sharon - if you did, I'm sorry, meant no harm.

As for the rest - I was sharing my experience - like everyone else here.

Your post is horrible and probably the worst on record. I can think of only one word for it - poisonous.

[mamamax]

Mamamax, it is great that you're having such good pain relief from the Spinecor. Sometimes I wish I could get hold of one myself (as a post fusion patient with residual curves of 45/35), it looks very comfy and supportive :)

The wheelchair thing has always struck me as something that can be used to influence patients by either scaring them into having surgery, or scaring them from having surgery. It's so emotive. Back in the 1970s kids were routinely told that they WOULD end up in a wheelchair if they didn't have the surgery, and these days I've seen surgeons appear to dissuade people with minimal curves who are keen on having surgery for cosmetic reasons by emphasising the risks.

Most people assume that "ending up in a wheelchair" means that they would probably end up with some degree of paralysis. In reality, I know several people with extremely severe uncorrected JIS and AIS of over 150 degrees, and none of them are wheelchair users for this reason. They do have very poor respiratory function and some rely on oxygen, which severely curtails their movements; I think that it is probably this, and pain, rather than paralysis that would force people with unfused scoliosis into a wheelchair.

It's a horrible thought :( Thankfully some of the people I know with curves of this magnitude have had successful surgery in recent years, which has kept them from needing oxygen and has definitely preserved their quality of life.

Thank you Toni - because of your perspective I'll sleep a lot better tonight! And that's the truth. For the moment I have no heart and lung compromise .. oh Lord, hope to keep it that way. Thank you so much!

[txmarinemom]

Pam

My comment to Sharon was in jest - trying to find some humor in this day. It was nice to see the same readings. I don't think Sharon would have taken offense -

Sharon - if you did, I'm sorry, meant no harm.

As for the rest - I was sharing my experience - like everyone else here.

Your post is horrible and probably the worst on record. I can think of only one word for it - poisonous.

Passive-aggressive humor is NOT in jest. Although Sharon can certainly speak for herself, I'll give you a tip: Piety is not becoming, and if you have to toss in an apology after the fact, it wasn't funny in the first place.

It's unfortunate you only perceive poison as things that come your way.

[LindaRacine]

Mamamax...

The Pain Management visit begs the question... Why?



So far, for me as an adult, bracing with Spincor is performing beyond all my expectations.

As an adult, my protocol is different than that of an adolescent - I only wear the brace during the day - approximately 10-13 hours a day. This is what has been recommended for my specific condition - and as you will see up thread, this involved a progressive break in schedule. There has been an occasional time or two recently, when I have gone 24 hours without the brace (I know bad me), when I do pain levels remain dramatically reduced and comparatively non existent - the postural improvement also holds during this brief time period.


http://www.scoliosis.org/forum/showthread.php?p=85741#post85741

[txmarinemom]

Um, yeah ... what Linda asked ...

Aside from wondering why no mention of a PM visit alllllll day, I'm puzzled by the account of said visit that seems to come from a person who's never seen a PM. Something akin to me describing when the doctor checked my prostate.

[hdugger]

<begin metadiscussion>

I understand that this board is run in a different way, and for a different purpose, from the Scoliosis Support board. For this reason, I've disagreed with Dingo's complaints about the moderation style on this board.

The scoliosis support forum is well-staffed and has a supportive style, which lets them step into and calm down all disputes. This board has only one moderator and a more scholarly style, so it's understandable that the moderator would only respond behind the scenes to complaints about particular posts.

However, neither form of moderation supports "calling out" members or seeming to have a dog in the fight. Maybe I have an over-sensitive ear for these things, but I found this sentence:

"I'm guessing that he's not as popular a surgeon as you've lead us to believe."

jarring from a moderator, as well as the tone of this question:

"The Pain Management visit begs the question... Why?"

If a moderator has a question about the veracity of a post, there are ways of going about checking the information without seeming to be pitted against the poster. For an example, check out how the moderators at the Scoliosis Support forum handled Dingo's abstract. They were direct, honest, and caring. They wanted to get to the truth rather then to prove a point.

When moderators cannot remain impartial (or, at least *appear* to be impartial), it tends to poison the air in a forum. Those on the "in" side become brave and hyper aggressive (witness txmarinemom's post in this thread - this post would only be written by someone who is fairly sure the moderator agrees with her). Those on the "out" side take more vieled swipes, because they're likely to be muzzled (witness the locked threads and people pussy-footing around forbidden topics).

It's OK to have a "sassy and opinionated" moderator a political forum, where people's opinions have no immediate affect on the lives around them. But, a moderator dealing with people's health and well-being really has to hold themselves to a higher standard of impartiality and compassion. Everyone else can take sides, but the moderator, by definition, cannot. Or, they can, but they can never *appear* to take sides.

<end metadiscussion>

[txmarinemom]

... Those on the "in" side become brave and hyper aggressive (witness txmarinemom's post in this thread - this post would only be written by someone who is fairly sure the moderator agrees with her). Those on the "out" side take more vieled swipes, because they're likely to be muzzled (witness the locked threads and people pussy-footing around forbidden topics)

Hdugger,

As much as I ~really~ want to be part of the "cool crowd", you apparently haven't been here long enough to realize Linda doesn't always agree with me.

My comments aren't hers, nor can you (or I) even guess her personal opinion of them.

You refer to me as hyper-agressive, but at least I say what I mean. I'll take that any day over namedropping (ad nauseum), and transparency on the scale of used Neutrogena.

[hdugger]

txmarinemom,

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.

[hdugger]

txmarinemom,

I don't mean to suggest an in and out crowd, but in and out ideas. Whatever else you and Linda and differ on, you are in agreement in this thread.

On the hyper-agressive post: 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.

[Ballet Mom]

Brace adjustment tomorrow - returning to my specialist in three months for the yearly xray check.

Here's my present for you Sharon - I remember you saying that you would pay to see two independent people measure the same xray and come up with the same cobb angles. I asked my specialist to pull out the xrays from a few days before being fitted with my brace. As you know my spinecor provider took before brace xrays ... both measurements, that of the surgeon and my spinecor provider are: the same! The office visit today was not all that uplifting until that point - Is this close enough to put the check in the mail?

[/COLOR]

Hi Mamamax, glad you're getting help with your pain.

I must say I am confused though with all these specialists. You're returning to the pain specialist in three months for the x-rays or is this your chiropractor you're talking about, or the SRS guy down the hall?

Also, which specialist did you ask to pull the x-rays from? And then you had the pain specialist measure the Cobb angle, or is this the SRS guy from down the hall? I'm confused.... The surgeon (which one) had taken x-rays very close to the same time as the chiropractor? Or they measured the same x-ray?

[jrnyc]

I believe that Linda is the fairest of moderators...doesnt "take sides," doesnt criticize, & has the good of the patients at heart...and all who write in to this forum...always!


jess

[mamamax]

Mamamax...

The Pain Management visit begs the question... Why?



http://www.scoliosis.org/forum/showthread.php?p=85741#post85741

Yes Linda, that is correct - immediate pain relief upon fitting. Your question was answered in my first paragraph of this thread:

I've been able to cut my pain medication in half - and often don't need it at all - as long as I can pretty much move throughout the day at my own pace. At the same time - while I can do more physically, in the course of doing more, I will still sometimes experience pain - albeit the pain is localized in just one area as opposed to my entire back .. hence I still see another surgeon in the same practice as my SRS surgeon, for pain management.

[mamamax]

Hi Mamamax, glad you're getting help with your pain.

I must say I am confused though with all these specialists. You're returning to the pain specialist in three months for the x-rays or is this your chiropractor you're talking about, or the SRS guy down the hall?

Also, which specialist did you ask to pull the x-rays from? And then you had the pain specialist measure the Cobb angle, or is this the SRS guy from down the hall? I'm confused.... The surgeon (which one) had taken x-rays very close to the same time as the chiropractor? Or they measured the same x-ray?

Hi Ballet Mom - I get yearly xrays from my specialists/surgeons yearly .. to check for any progression. I return to these specialists every six months for pain management monitoring, or any other time I have a concern.

I had xrays taken days before fitting with my brace - I wanted a record of my beginning measurements from both my specialists and my brace provider - so two sets of xrays within days of each other. One set by the specialists, the other by the brace provider. Cobb angle measurements turned out to match.

[mamamax]

Dhugger & Toni Bunny -

Thank you for your comments. Yesterday was not an easy one, and it would have been considerably more difficult without your support and understanding.

[Pooka1]

My observations/opinions:

1. This board moderates to elevate facts over feelings. SSO, in my opinion, allows feelings at the expense of facts. I consider that somewhat misleading. That is why I have chosen to stop posting over there (except on one thread). I understand protecting people's feelings but NOT at the expense of facts. We are adults, not children.

2. Anyone familiar with the situation here would not say Linda and Pam are in great agreement on certain subjects.

3. Mamamax, I didn't take offense about the joke. Relax. I think what I was asking what is the Cobb angles measured by a chiro who wants to keep a growing kid in treatment for some alternative/unproven approach would have the same reading as a surgeon. And w.r.t. your chiro and surgeon agreeing on your (adult, pre-brace) measurement this one time, you would actually expect that by chance alone some percentage of the time. A better test would be if the surgeon agreed with the in-brace reduction. That I would be interested in seeing.

[mamamax]

Thanks Sharon - I didn't seek to be offensive, and didn't think you would interpret my comments that way. Honestly, it was the bright spot in the visit. Yep, I'll be curious, nervous, excited, about any agreement found at end of treatment also. Meanwhile, it is comforting to see that all parties are using the same measurement method. Appears that way at least.

[Pooka1]

When moderators cannot remain impartial (or, at least *appear* to be impartial), it tends to poison the air in a forum. Those on the "in" side become brave and hyper aggressive (witness txmarinemom's post in this thread - this post would only be written by someone who is fairly sure the moderator agrees with her). Those on the "out" side take more veiled swipes, because they're likely to be muzzled (witness the locked threads and people pussy-footing around forbidden topics).

I see no appearance of impartiality. There is a commitment to facts and knowledge. Some people think the facts or some surgical consensus is bias if it doesn't agree with their opinion. Either something is or is not a fact. Similarly either something is or is not a consensus position in a certain community. Similarly either evidence does or does not exist for a certain claim.

It is a fact that people like their feelings and will choose them over facts at times. Everyone is entitled to their own opinions; They are NOT entitled to their own facts. And they are NOT invited to pretend to be experts when they are not and mislead new posters with blind leading the blind lading the naked ignorance.

I note how Dingo, who specializes in childishly calling me names on another forum, is a frequent complainer about lack of moderation here. He raises irony to a zen art on this point. If he called me those childish names here I would not be calling for moderation. I would edify him and then damn well expect no further complaints about lack of moderation from that quarter.

Moderation is for lazy people who refuse to think for them self or who can't be bothered to control what they read. They are also totalitarian in wanting to control what others write. And it is almost always people who are complaining about other posts that are simply too factual for their taste. Not everyone wants facts as we have seen over and over again.

It's OK to have a "sassy and opinionated" moderator a political forum, where people's opinions have no immediate affect on the lives around them. But, a moderator dealing with people's health and well-being really has to hold themselves to a higher standard of impartiality and compassion. Everyone else can take sides, but the moderator, by definition, cannot. Or, they can, but they can never *appear* to take sides.

Linda appears to be taking the side of facts, if and when they are known, or surgical consensus, something she has expertise in given her background. Apparently some view that as bias. If that is bias then I'll take it. I will always choose knowledge over faith.

[jrnyc]

Dear Sharon
Amen! you go, girl...very well said!!

jess

[hdugger]

Moderation is for lazy people who refuse to think for them self or who can't be bothered to control what they read. They are also totalitarian in wanting to control what others write. And it is almost always people who are complaining about other posts that are simply too factual for their taste. Not everyone wants facts as we have seen over and over again.

This is somewhat akin to saying that law is for lazy people who aren't willing to take justice into their own hands. Many political boards thrive on this kind of "frontier" code of conduct where ideas are shouted down and only the strongest survive, but it is simply inappropriate for a health forum.

The reason it is inappropriate is exactly the opposite from what you state above - frontier forums sacrifice fact to feeling. That is, instead of being able to freely pursue ideas, certain lines of thought are shouted down and people are personally attacked until those avenues of thought are closed off to all but the most hardy. It may be good theatre, but it is not conducive to illuminating facts above feeling, and it starves any reasoned discussion of air.

Responding to the discussion on the Torso Rotation thread, this board is by far the most moderated board I participate on. It is moderated in frontier fashion by innuendo and invective, and the purpose of the moderation is to shut down discussion on certain topics. The role of the moderator is to supplant that "frontier moderation" with actual moderation which encourages the free exchange of ideas by discouraging personal attacks.

[Pooka1]

The role of the moderator is to supplant that "frontier moderation" with actual moderation which encourages the free exchange of ideas by discouraging personal attacks.

The only role I can see for a moderator is to remove counterfactual material ahead of posters having to point it out, continually at times.

[Pooka1]

This is somewhat akin to saying that law is for lazy people who aren't willing to take justice into their own hands. Many political boards thrive on this kind of "frontier" code of conduct where ideas are shouted down and only the strongest survive, but it is simply inappropriate for a health forum.


What is completely inappropriate in a health forum is counterfactual and misleading information.

That stuff gets by on other health fora but not so much here because the moderator is extremely experienced in the subject. So when we see the moderator questioning comments, it is not out of a bias but out of a body of knowledge and experience. People don't seem to realize this.

Folks who focus on form tend to not want the substance no matter how factual. For example there is no appropriate way to question someone's religious belief. The substance will be rejected irrespective of the tone.

[Pooka1]

I don't mean to suggest an in and out crowd, but in and out ideas. Whatever else you and Linda and differ on, you are in agreement in this thread.


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.

For medicine, plenty is unknown so all you can do is state what is known and what is not known and what is the state of the evidence.

[hdugger]

That stuff gets by on other health fora but not so much here because the moderator is extremely experienced in the subject. So when we see the moderator questioning comments, it is not out of a bias but out of a body of knowledge and experience. People don't seem to realize this.


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?"

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.


Folks who focus on form tend to not want the substance no matter how factual. For example there is no appropriate way to question someone's religious belief. The substance will be rejected irrespective of the tone.

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 indvidual instead of exploring the topic. Factual information is low in heat. 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.

[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. :D

[...] 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.

[mamamax]

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

Pam ~

Where to begin - guess it would be best to start by ignoring the comments about twisted nickers. First of all, I've already indicated I cannot give an answer to your satisfaction (up thread) but you can be certain I'll press for all the gory details (and write them all down) next visit.

Why you are concerned that I am not receiving proper treatment is curious to me - seems this opinion is based upon the fact that you, who are not a doctor, do not agree with one who is, and has been treating me over a long period of time.

And I don't know why my diagnosis should be so alarming to anyone. I believe its a known fact that surgery is not the always and completely best answer for everyone - this doctor for one thing, has noticed a significant improvement in quality of life over the last year. The beautiful Egyptian (and he really is) tracks my spine yearly, and yes measures the cobb angles - looking for dreaded progression. What is the problem with this?

If you read my previous post, where I discuss our doctor/patient relationship ... no - the really, really, really, bad back comment does not concern me at all. Now, if this comment were made on an initial first visit, then yes it may bother me - but not in context of a very good relationship that has been established over the course of time.

[txmarinemom]

Pam ~

Where to begin - guess it would be best to start by ignoring the comments about twisted nickers. First of all, I've already indicated I cannot give an answer to your satisfaction (up thread) but you can be certain I'll press for all the gory details (and write them all down) next visit.

Why you are concerned that I am not receiving proper treatment is curious to me - seems this opinion is based upon the fact that you, who are not a doctor, do not agree with one who is, and has been treating me over a long period of time.

And I don't know why my diagnosis should be so alarming to anyone. I believe its a known fact that surgery is not the always and completely best answer for everyone - this doctor for one thing, has noticed a significant improvement in quality of life over the last year. The beautiful Egyptian (and he really is) tracks my spine yearly, and yes measures the cobb angles - looking for dreaded progression. What is the problem with this?

If you read my previous post, where I discuss our doctor/patient relationship ... no - the really, really, really, bad back comment does not concern me at all. Now, if this comment were made on an initial first visit, then yes it may bother me - but not in context of a very good relationship that has been established over the course of time.

Nevermind, Maxene ... still no data to fill in the glaring holes. I guess I really AM silly to request factual feedback - even when you bring up said visit, and put it in the context of something substantial.

Same old.

Good luck to you.

[mariaf]

Those on the "in" side become brave and hyper aggressive (witness txmarinemom's post in this thread - this post would only be written by someone who is fairly sure the moderator agrees with her).

I've known Pam for a while now - and I have to say this post made me laugh out loud. I mean no disrespect to anyone but if you knew Pam, you'd know that the LAST thing she cares about, when stating her opinion, is whether or not the other person agrees with her.

We've had our differences of opinion as well - and it's always been something I've respected most about her - she will tell me what HER honest thoughts and opinions are, not what she thinks I want to hear or what I will agree with.

[mamamax]

Nevermind, Maxene ... still no data to fill in the glaring holes. I guess I really AM silly to request factual feedback - even when you bring up said visit, and put it in the context of something substantial.

Same old.

Good luck to you.



If I had information, in detail - and on hand, to satisfy you Pam - I would post it. I'm not going to make a special Pam appointment to do that - I'll fill you in three months from now. No reason for the sarcastic remarks - really.

[LindaRacine]

<begin metadiscussion>

I understand that this board is run in a different way, and for a different purpose, from the Scoliosis Support board. For this reason, I've disagreed with Dingo's complaints about the moderation style on this board.

The scoliosis support forum is well-staffed and has a supportive style, which lets them step into and calm down all disputes. This board has only one moderator and a more scholarly style, so it's understandable that the moderator would only respond behind the scenes to complaints about particular posts.

However, neither form of moderation supports "calling out" members or seeming to have a dog in the fight. Maybe I have an over-sensitive ear for these things, but I found this sentence:

"I'm guessing that he's not as popular a surgeon as you've lead us to believe."

jarring from a moderator, as well as the tone of this question:

"The Pain Management visit begs the question... Why?"

If a moderator has a question about the veracity of a post, there are ways of going about checking the information without seeming to be pitted against the poster. For an example, check out how the moderators at the Scoliosis Support forum handled Dingo's abstract. They were direct, honest, and caring. They wanted to get to the truth rather then to prove a point.

When moderators cannot remain impartial (or, at least *appear* to be impartial), it tends to poison the air in a forum. Those on the "in" side become brave and hyper aggressive (witness txmarinemom's post in this thread - this post would only be written by someone who is fairly sure the moderator agrees with her). Those on the "out" side take more vieled swipes, because they're likely to be muzzled (witness the locked threads and people pussy-footing around forbidden topics).

It's OK to have a "sassy and opinionated" moderator a political forum, where people's opinions have no immediate affect on the lives around them. But, a moderator dealing with people's health and well-being really has to hold themselves to a higher standard of impartiality and compassion. Everyone else can take sides, but the moderator, by definition, cannot. Or, they can, but they can never *appear* to take sides.

<end metadiscussion>
Again, you might want to know all the facts before you trash me, but I've stopped expecting that.

Mamamax has repeatedly attributed quotes and "facts" to a specialist that she won't name. If I quote a specialist, I'm always willing to put a name to that quote. I'm guessing it would bother you if I stated "a highly regarded scoliosis specialist told me that every brace is a scam." I suspect you'd want to know the source so you could at least challenge it.

[txmarinemom]

If I had information, in detail - and on hand, to satisfy you Pam - I would post it. I'm not going to make a special Pam appointment to do that - I'll fill you in three months from now. No reason for the sarcastic remarks - really.

Yes. So the "detail" stands at "really really really bad". I get that.

And you don't find "a special Pam appointment" sarcastic? You have no perception of your own actions and words ... only what all those other meanies say to you.

Pobresita.

[mamamax]

Again, you might want to know all the facts before you trash me, but I've stopped expecting that.

Mamamax has repeatedly attributed quotes and "facts" to a specialist that she won't name. If I quote a specialist, I'm always willing to put a name to that quote. I'm guessing it would bother you if I stated "a highly regarded scoliosis specialist told me that every brace is a scam." I suspect you'd want to know the source so you could at least challenge it.

The reason I won't give you the name Linda is: you told me you wanted it so you could have a conversation with him. That is not a necessary part of my health care treatment.

The "What If" quotes do not represent anything I have ever said.

[mamamax]

Yes. So the "detail" stands at "really really really bad". I get that.

And you don't find "a special Pam appointment" sarcastic? You have no perception of your own actions and words ... only what all those other meanies say to you.

Pobresita.

I find my comment in keeping with the tone of your message.

[txmarinemom]

I find my comment in keeping with the tone of your message.


I expected nothing less from you, and would expect nothing less regardless of my response. It doesn't surprise me you persist with an unwillingness to listen. Sadly, you persist speaking bountifully (and loudly) of what you don't know.

And even what you don't know you don't know.

(I semi-plagarized the concept of ignorance of ignorance, but it is so, SO accurate)

[hdugger]

Again, you might want to know all the facts before you trash me, but I've stopped expecting that.


I'm not pursing a personal vendetta, and I'm sorry it reads that way to you. I am suggesting that there are ways that you could perform your work here that would make discussion more fruitful for the participants on the board, in my opinion. If you disagree with my suggestions but are interested in why I'm troubled by aspects of the moderation, I'd be happy to pursue that discussion. If you're simply not interested or have reasons for dismissing my concerns, I'd be happy to hear about that too. But, this particular tone - "trashing me" and "stopped expecting that" suggests some intense personal dispute between us which simply does not exist. I'm a participant on the board you moderate and I believe you could do things in a way which would better foster discussion. It's really not any more emotionally charged than that.

Your post, actually, is an example of the problem I see. Disagreements suddenly go from facts and ideas to this very personal, emotionally charged tone. It does nothing to elucidate and everything to obscure. Again, you may disagree, but I feel fairly strongly about it.

As to the facts you state, I'm not clear exactly what the specialist said that was so controversial or what detrimental effect you thought it would have on the forum. Again, the best way of dealing with such things is forthrightly - "That's a very controversial statement. I would have to talk to the specialist directly before I gave it any weight."

In your hypothetical case, I do know (or, at least I think I recall) that at least one of the polled specialists for the equipoise part of the bracing research put a "0" expection on the effectiveness of bracing, so I suspect there are SRS specialists that feel that way. Because of your role as moderator, I would expect you to provide more information. I'm not certain I would expect a participant to, though.

None of that, though, addresses my concern, which is not that you disagreed with an idea or questioned a fact, but that you kind of came at it sideways through innuendo in manner that I considered unprofessional behavior in a moderator.

[CHRIS WBS]

Pam ~
The beautiful Egyptian (and he really is) tracks my spine yearly, and yes measures the cobb angles - looking for dreaded progression.

Does he look anything like Omar Sharif? I may want to tag along on your next appointment.;)

[mamamax]

Does he look anything like Omar Sharif? I may want to tag along on your next appointment.;)

Better! Impossible not to mention :-) Consider yourself invited.