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mamamax
04-09-2010, 06:04 AM
http://www.scoliosis.org/forum/showthread.php?t=10264

Once again, a thread has been closed, without explanation in the Non-Surgical Forum.

Picking up where we left off.

In post #80 I made a statement regarding Sharon Dunn's son Jay and his experience with bracing as a young adult, and also referenced the article Amazing Brace: http://www.macleans.ca/science/health/article.jsp?content=20080123_55198_55198

I've written once again to Sharon Dunn to confirm my recollection of an earlier correspondence with her.

She confirms that Jay maintained his benefits from bracing without specific exercise (i.e., Schroth). She has brought up some very interesting points of interest in her letter - I've asked for permission to share her letter, and if she grants that I will do so.

In the mean time, I would like to open a discussion about adult spinecor bracing - specifically, what might cause such reported reduction in pain. Are slight (or significant) improvements or increased progressions in any way responsible for decrease or increase in pain?

Do we have any literature on this?

rohrer01
04-09-2010, 07:35 AM
It was a good topic, too. :( I wish people don't have to be so argumentative. I understand how we don't want to be throwing false information out there (not saying that anyone did), but TRUE science has always been trial and error. If something works for one situation and not another, then a true scientists will investigate and find out why, rather than be closed minded and demanding of proof at every turn. Sometimes it takes time to get proof. The atom wasn't discovered overnight and there are variances in nature that must be taken into consideration. I agree that no one had BAD intentions, but the kind of arguing of every point or every success story that didn't have proper citations isn't necessary here. This is a forum for free and open communication between members, not a scientific journal that will be peer reviewed. Science definitely has it's place, but if you look at the history of science, it is FILLED with misinformation and biases that have taken hundreds, if not thousands, of years to undo. Sometimes you need to keep in mind human compassion and the feelings of others. This does not make one a bad scientists. I hope I'm not offensive to anyone, but we all need to lighten up a bit for the sake of free exchange of information and ideas, PLEASE... If we do, we will all walk away from here being better informed, whether we agree or disagree.

However, on the flip side, the discussion did migrate off topic quite a bit. :confused:

Pooka1
04-09-2010, 09:26 AM
"Extraordinary claims require extraordinary proof." -- Carl Sagan

"If it doesn't make sense then it probably isn't true." -- Judge Judy Sheindlin

michael1960
04-09-2010, 11:45 AM
Yes, very good topic. Unfortunately it was stopped.

Linda - please do not shut down great threads. If you do not like where it was going then please ask Pooka1 to quit criticizing what people have to say. You know it happens all the time. Pooka1 and some others have very strong biased and negative opinions of the following:

Chiropractors, SpineCor Brace, and Dr. Rivard/Coillard.

I have been on several of these valuable threads only to find many of us debating with Pooka1. She is welcomed to her opinion like everyone but I would suggest that she and others who are not supportive of these treatments to give their opinion/perspective once and then let the rest of us enjoy the thread and help each other.

I have received several PMs in the past 2 days on this subject from members who will not post because they do not want to be criticized by Pooka1. Why do members have to use PMs and emails to share experiences? That sure defeats the purpose of an open forum. I tolerate her criticism. And so do a few others. But since I have been on this forum for a couple months it is the same issue over and over regarding the topics I have mentioned.

I would like to recommend that when there is a discussion on chiropractors, SpineCor brace, or Dr. Rivard/Coillard, could we have Pooka1 and any others who who distrust all of these, please make one post, share feelings and opinions and any relevant experience, and then let the rest of share our experiences and help each other.

Pooka1 - Please do not participate in these threads. I value your opinion like everyone else, but for you to try and debate post after post on a subject that you may have limited direct experience and direct knowledge, you only hurt the thread and conversation. This is not the first one. You are a very passionate person, but your passion is discouraging many others from getting any value from the conversation. Please provide your perspective and then let the rest of us help each other without criticism. Most of us on the forum are not asking you or anyone else to protect us from chiropractors, SpineCor brace, or Dr. Rivard/Coillard. We should all be able to provide our experiences, positive or negative, and then we can all make our decision on what we want to do. People with positive experiences are trying to share them. Some with negative experiences are afraid to post them, afraid you and others will be there for the "I TOLD YOU SO!". We are all struggling with scoliosis. We do not need anyone telling us what we did was wrong, or make any of us feel bad for taking a chance on a treatment.

It is through this trial and error we may find the next great idea on helping each other. I am doing things with my daughter that that are different and have probably not been done before, at least not exactly the same. Will it work. I don't know. So far we are moving in the right direction. Each treatment is analyzed and evaluated and measured to see if it works. But I learn from others who are willing to share opening what they are doing and those who are willing to share what has worked and what has not worked. Please allow everyone to post without criticism.

Look at your last post. Is that supposed to be helpful to any of us?

Do you think any of us care what Carl Sagan or Judge Judy have to say? Absolutely Not! They may both be idiots for all I know! I really don't care. But this is the kind of stuff you throw out at us that makes no sense to any of us, and definitely adds NO VALUE to the conversation, unless you (and probably only you), see value in just trying to antagonize one or more forum members.

Thank You
Michael

rohrer01
04-09-2010, 03:12 PM
Well said Michael1960.
Sorry Pooka1, I tried to be nice about it and be "scientifically" correct out of respect for your feelings. But Michael is right. Our purpose here is not to argue or prove what is "right" or "wrong". It is to SHARE information and experiences, good or bad. And you have to admit that what works for one person doesn't always work for another. Even if my scoliosis had been caught at 25*, they wouldn't have braced me. I have an unusual deformity. I had a bad experience with a chiropractor (and you enlightened me on things I didn't know about chiropractic, and thank you for that) but still wanted to know how others were responding. Everyone is unique and so is every treatment. Please respect that.

Pooka1
04-09-2010, 03:23 PM
Hey Rohrer01,

This might interest you... a case of a high 55* thoracic curve that Dr. Hey corrected recently...

http://drlloydhey.blogspot.com/2010/03/15-yo-gentleman-artist-from-south.html.

I suggest we get back on topic, resolve to at least try to make sense, and nix the metadiscussion about nonsense. I sometimes wonder if everyone is on board with science and medicine being the only game in town. It never occurred to me that folks might not realize that.

Pooka1
04-09-2010, 03:25 PM
I had a bad experience with a chiropractor (and you enlightened me on things I didn't know about chiropractic, and thank you for that) but still wanted to know how others were responding. Everyone is unique and so is every treatment. Please respect that.

People are entitled to their own opinions. They are NOT entitled to their own facts. Getting folks to see and accept this might be the biggest struggle within this forum and it doesn't have to be.

CHRIS WBS
04-09-2010, 03:36 PM
I sometimes wonder if everyone is on board with science and medicine being the only game in town.

Why then do you reference Dr. Hey? I think hed be the first to debunk that statement. Throughout his blog he credits God for his ability to help people with scoliosis and prays with his staff and patients before going into surgery.

Pooka1
04-09-2010, 03:40 PM
Why then do you reference Dr. Hey? I think hed be the first to debunk that statement. Throughout his blog he credits God for his ability to help people with scoliosis and prays with his staff and patients before going into surgery.

Science and religion are not compatible except in a trivial sense in that people partition their minds and don't care about not being consistent.

Hey may credit God for his abilities but he wouldn't claim to be able to prove it.

michael1960
04-09-2010, 03:43 PM
mamamax

I just read your thread on adult bracing with spinecor. It is a great thread with a lot of very good information for any adults interested in bracing. It was the one started last year and updated this year.

Are you thinking about starting this new thread or planning to continue with that one? I think the one you started last year is very good. I was impressed. If you start a new one make sure you reference that one. It would be a shame for others to not have a chance to read through it.

It would be good to maybe start one with the title Adult Bracing. Maybe there should be a forum category for Adult Bracing (maybe there is, I did not look).

Nice Job
Michael

CHRIS WBS
04-09-2010, 03:45 PM
Science and religion are not compatible except in a trivial sense in that people partition their minds and don't care about not being consistent.

Hey may credit God for his abilities but he wouldn't claim to be able to prove it.

How do you know? Have you asked him?

Pooka1
04-09-2010, 03:48 PM
How do you know? Have you asked him?

Well I assume he isn't a nut.

MitoMom
04-09-2010, 03:53 PM
I joined this forum because I needed information on how to help my son cope with his upcoming surgery. I belong to other forums due to his progressive muscle disease. In those forums, it's people helping people. We recognize that ALL of us are different, ALL our doctors have different experiences with the 20+ progressive muscle diseases we all bring to the forum. BUT we don't attack or belittle each other with comments that don't support and encourage each other. We celebrate the lives our kids have with all the extra baggage of knowing a life threatening complication is just around the corner.

There are times I would love to recommend this forum to people in the other networks but I won't because of the arguments that are not productive.
While some want to debate, debate means you listen to me and I listen to you with respect for each other's point of view, life experience and offline support network.

There are NUMEROUS times I choose not to read a thread because I know that the debate has turned into mud slinging. There are some people on this forum that I have hidden because they are neither encouraging or helpful in their comments.

michael1960
04-09-2010, 04:33 PM
Here is how to block a user. It is very easy and it works great.

In addition, it would also be helpful for all of us to not reply to someone who is just debating a topic. It just adds more posts that are not relevant to the topic that we all have to read. I know it is hard to do. We all want to defend ourselves when our ideas are criticized (or some feel when their ideas are personally attacked).

I am feeling much better already (big smile on my face). I can now read through the threads without having to read a bunch of nonsense.

I am here to get help and give help whenever I can. It is that simple. When we can all openly share what works for us and what has not worked for us, we all move a bit closer, inch by inch, to managing scoliosis whether it is for ourselves or for our children.

This also means, that if I am doing some treatment for scoliosis, and you know through personal experience or something you have read in a thread or you know of a study that shows negative results with this treatment , by all means share it. This is not criticism. This is help.

Thanks
Michael

===========================================

NSF Forum FAQ

Can I block posts, emails and messages from specific users?

If there are particular members that bother you and you do not want to see their posts or receive Private Messages and Emails from them, then you can add these members to your 'Ignore List'. There are several ways to do this:

Through your User Control Panel: User CP, Settings & Options, Edit Ignore List. Then, type their name into the empty text box and click 'Okay'.

============================================

michael1960
04-09-2010, 04:46 PM
Barb

I very much appreciate and agree with your comments. So many people have quit commenting on this forum because of the "mud slinging".

While hiding users is a great feature (and it works well), it may be more productive if the "mud slingers" were removed from the forum. Other forums I am on do not tolerate it.

The forum could exchange a few "mud slingers" for 10s or 100s or 1000s of users who would openly share their experiences to the benefit of all of us. I have received some great advice and results from different scoliosis treatments, but some of them are all through PM so only me and anyone else that is sent a PM ever get to hear about them. People just don't want the hassle of having someone attack a treatment that may not be widely accepted (or accepted by a few).

Thank You
Michael

mamamax
04-09-2010, 05:32 PM
mamamax

I just read your thread on adult bracing with spinecor. It is a great thread with a lot of very good information for any adults interested in bracing. It was the one started last year and updated this year.

Are you thinking about starting this new thread or planning to continue with that one? I think the one you started last year is very good. I was impressed. If you start a new one make sure you reference that one. It would be a shame for others to not have a chance to read through it.

It would be good to maybe start one with the title Adult Bracing. Maybe there should be a forum category for Adult Bracing (maybe there is, I did not look).

Nice Job
Michael

Thank you Michael. When I joined last April I caused quite a stirr. I was very happy to have found Spinecor. A fellow patient of the practice I work with posted her success story shortly after - It was one of the darkest days ever in this forum.

Joseph O'Brien was moved to post Setting The Record Straight

After that, a fellow forum member, Concerned Dad, suggested that Linda open a thread where I could post my story It is designed to be a journal from fitting through the two year protocol. I post there following each three month follow up with my provider. Concerned Dad seems to no longer post here, a pity .. I miss his wisdom. You remind me of him.

I've been here for a year and it seems a constant struggle for those of us seeking non surgical methods to find a voice in the non surgical forums. Threads are constantly hijacked, people humiliated, and so on and so forth. I'm glad to see people expressing dissatisfaction with it - because there really is no excuse for it. I am deeply saddened each time I see some one leave in disgust.

I've received permission from Sharon Dunn to post our correspondence and am getting ready to do that now.

mamamax
04-09-2010, 06:07 PM
Hi Sharon -

Hope all is well our your way. Into my second year with Spinecor - very very happy with it!

I've remained a member at NSF and there are more people learning about this brace, using it - and happy with it also. I was having a conversation with a parent whose daughter is bracing and I mentioned your son, and your article. We were chatting about exercise - I mentioned that your son has kept his correction without specific exercise (Schroth). Naturally one of the worst offenders has accused me of intentionally misleading people. Was I wrong?

Best to you as always!



Hi Maxene, I'm so happy the brace is working out for you.

Wow, they're really rough on those NSF forums.

You're not wrong. My son's pain issues were completely solved by the brace, with no other exercise. The brace is like being in physiotherapy, so usually no other exercise regimen is needed. But maybe you shouldn't use the word 'correction' when talking about adults spine because that's when the nay sayers get up in arms. Curve correction occurs in young patients, the brace helps their spine straighten.

But with adults, like my son, curve correction is not expected because the spine is already fully developed and set. The action of the brace can prevent further progression, and relieve pain issues, as with my son. Pain is the main complaint of adult scoliosis sufferers, and it's the biggest reason adults have spinal fusion, so pain relief is a big deal. In adults, the brace strengthens the muscles, and the stronger muscles then help to better support the spine, which can greatly reduce or eliminate pain.

In my son's case, the curve was not the issue at all, it was all about the pain.

You're a brave woman to be battling on the forums. More power to you. I'm sure you are helping many people with their decision to use the brace.
I still get response from the story I wrote, from young and old patients who were kept out of surgery by the brace. And I believe in it even more than I did when I wrote the piece. It is also slowly becoming more widely regarded by medical practitioners.

So you are definitely on the correct side of the debate, no matter what the others say. And by being strong, you are helping others!

Best regards,
Sharon Dunn


Two emails this morning with tea that make my heart smile - this one from you, and another from Dr. Weiss trying to set up an email date with an associate of his to help be better understand some Formetric terminology. Semantics - yes, I should change the word correction to benefits. That would somewhat appease the naysayers.

Thing is - there is a definite postural component to all this - evidenced by any change in height, and that does relate to a change (if even slight) in cobb angle, and that is probably why pain reduces. Can the adult spine be rehabilitated? Well, Martha Haws documents a 50% reduction in her curves (in her 40's). We do not expect correction with adults - but Lord knows we are finding it. I've re-gained 2-3 inches in height along with slight improvement in cobb angle and such profound pain relief that I am no longer in the "needs surgery" category. That is a miracle by any definition. I look forward to the day when the literature catches up with reality.

As for what the Spinecor manufacturer puts on their website ... they are very conservative (understandably), I remember the day when they did not recommend the brace for adults .. today they say small cobb angle improvements may result in adults.

Your article has probably done more good around the world that you would ever imagine. For certain it was my first hope and inspiration and as important to me as the brace itself. The work you put into it continues to inspire me to this day. The parent I was chatting with at NSF is forming his own website and will be placing it there - he was astounded that he had not come across it before and very impressed by it.

May I share your letter at NSF? I would follow it by explaining that I'm editing my post to replace the word correction with benefits - or would you prefer to keep it personal correspondence?

Thanks every so much Sharon - for ever so much, you're the best!!




Sure, feel free to include parts of my letter. and this one, as well. But remind everyone, I'm not a doctor, I'm just a writer reporting my findings.

MAxene, I was very careful about the wording in my article, and must tell you we didn't get one complaint from a doctor! I wanted to tell my story but not to sensationalize it. I had one goal when I wrote the story - to help people, like you. It took me nine months to write because of the extensive research I did.

When I wrote the story, I was going against the medical community, but that didn't bother me at all -because I had seen firsthand what the brace can do. My son went from having constant pain that had changed his quality
of life, with the probability of fusion, to having absolutely no pain at all!

I also applaud MacLeans Magazine, for taking on the story. And you'll be interested in knowing that, one of the editors, who had fusion as a child, took her daughter to see Dr. RIvard after the story was published.
Her teenage daughter had an increasing curve the doctors were 'waiting and watching' - aargh! The girl is now in the brace with a reduced curve and an excellent prognosis! THe editor keeps writing me telling me how grateful she is.

Anyone who ignores these facts and insists the brace doesn't work is simply ignorant.

I have received hundreds of letters since from people, like yourself, who's lives have been changed by the brace. Because of that, Amazing Brace by far the most rewarding story I've ever written.

Please pass on to people who dont believe in the brace that they are welcome to email me. I would hope that they would become informed, rather than discourage people who can be helped. That would be so sad if someone suffering misses their chance because of negative opinions that have no base.

Maxene, you are doing a great service to others by sharing your story about the brace. It is gaining more acceptance around the world and I believe one day, soon I hope, will be recognized for the great invention it is!!

Please remind everyone, I have absolutely nothing to gain from supporting the brace - except wonderful letters from scoliosis sufferers who's lives have been turned around.

Keep the faith.
Sharon Dunn
sharondunn.com

rohrer01
04-09-2010, 06:36 PM
Those were some nice letters. I'm glad so many people are getting relief from the pain. I wish it were an option for me. I will talk to yet two more doctors about it. So far one said he hadn't heard of it, and the other said I wouldn't be a good candidate. But for those of you out there with different curve patterns, what could it hurt to try?

mamamax
04-09-2010, 07:03 PM
rohrer01 - Perhaps your surgeon could have a conversation with Dr Rivard (an SRS surgeon)? Sometimes surgery is a necessity - and in that case, we are fortunate to live in times where instrumentation and methodology has become refined and is able to achieve so much. While I am doing well now, there is no predicting my future, and I am ever mindful of that. We all need all the help we can get. A conversation with Rivard may be good I think, towards helping to understand the best direction to take.

dailystrength
04-09-2010, 08:07 PM
Barb
The forum could exchange a few "mud slingers" for 10s or 100s or 1000s of users who would openly share their experiences to the benefit of all of us. I have received some great advice and results from different scoliosis treatments, but some of them are all through PM so only me and anyone else that is sent a PM ever get to hear about them. People just don't want the hassle of having someone attack a treatment that may not be widely accepted (or accepted by a few).

Thank You
Michael

This is truly a shame! I agree that negativity should NOT be tolerated. Thanks, Michael for your input! Hiding is a good tool in any case. But this is terrible! We all need all the advice we can get.

No Negativity Allowed! This is the NON Surgical Forum where many therapies and methods are tried and shared! Nay sayers not allowed! :p

dailystrength
04-09-2010, 08:29 PM
What an interesting site- thanks for that link. Hope you have a great weekend. We will be strong!

rohrer01
04-09-2010, 09:01 PM
Dailystrength,
No need to "duck". You have a lot of nice things to say. ;)

MitoMom
04-09-2010, 09:22 PM
Mamamax,

Could I suggest you try posting a new thread again about your brace, along with the letter from Sharon and it's success for YOU where people can read it without having to sort through all our comments that detract from the information.

I know you posted your experience last year as well. I tried wading through that whole thread back in January but got so turned off by the criticism embeded within it that I never finished it. I abandoned the forum for over a month because of the hostility that was displayed within that thread and others.

Yes, we got off your topic today on your thread but I think that we voiced some issues and concerns that will make this forum a more tolerable place to learn. And if enough of us choose to "ignore" people who are consistently critical by using that function on the community page, we will take away their audience and power.

flerc
04-09-2010, 10:43 PM
It was a good topic, too. :( I wish people don't have to be so argumentative. I understand how we don't want to be throwing false information out there (not saying that anyone did), but TRUE science has always been trial and error. If something works for one situation and not another, then a true scientists will investigate and find out why, rather than be closed minded and demanding of proof at every turn. Sometimes it takes time to get proof. The atom wasn't discovered overnight and there are variances in nature that must be taken into consideration. I agree that no one had BAD intentions, but the kind of arguing of every point or every success story that didn't have proper citations isn't necessary here. This is a forum for free and open communication between members, not a scientific journal that will be peer reviewed. Science definitely has it's place, but if you look at the history of science, it is FILLED with misinformation and biases that have taken hundreds, if not thousands, of years to undo. Sometimes you need to keep in mind human compassion and the feelings of others. This does not make one a bad scientists. I hope I'm not offensive to anyone, but we all need to lighten up a bit for the sake of free exchange of information and ideas, PLEASE... If we do, we will all walk away from here being better informed, whether we agree or disagree.

However, on the flip side, the discussion did migrate off topic quite a bit. :confused:

Some time ago I had the intention of create a scoliosis forum with a different organization about the sections. The first would be oriented to understand the problem and to be able to evaluate different kind of solutions with that knowledge in mind.
Facts and conclusions would be the sub sections. Doctors and professionals of different disciplines could participate. I imagined so greats debates!. The only two rules would be that all that could be said should to be well founded in a rational way without any emotional connotation. For instance, if someone says that in adulthood, scoliosis could not be reversed in a conservative way, because he never have seen just one case, this post would be deleted. If debates are performed with respect and only trying to know the true, they could be really so useful. I'll remember for ever an osteopath in the spanish forum; he has no problem in debate with anyone and in answer any question, he is so sure about his discipline.. and he really wants to help.
The other section would be oriented to know other people with scoliosis and to share experiences. In this section for instance somebody could says that Breusse massage restores his discs in an hour and now he is an inch taller and nobody could attack him, but everyone could open a thread in the first section explaining why Breusse massage principles are against the most elemental logic so it would be reasonable to believe that cannot works.
I believe that exist 3 different worlds: the occidental scientific and orthodox world, the oriental world and the mystic world. Surely this first section would be only for the first world, but I know that we can find different options to solve the scoliosis problem also in the others two worlds. If they could works or not.. I think that is impossible to demonstrate that cannot works but just only one case could demonstrate that its could.

rohrer01
04-09-2010, 11:58 PM
Flerc,
Since I have been on this message board, which isn't very long, I have seen that you have always demonstrated that you are a very logical and sensitive person. Your idea is good. I have no problem with debates if you are respectful of others. What I think happened here is that some people were just trying to discuss a topic and it was challenged at every turn. I don't even think the person doing it realized that it was causing hurt feelings and less communication between the other parties. Like I said, I don't think bad intent was ever a motive, as we are all dealing with the same thing. I think the person thought they were being helpful, and I respect that. I carry no hard feelings. I realized through reading all of the posts that I know very little about a disease that I have had all my life. I am now faced with BIG decisions and have found the help I need here.

You keep up your good work. You are very knowledgeable and your daughter is very fortunate to have a father who cares enough to keep up on all the latest therapies to help her and others.
:)

flerc
04-10-2010, 03:52 PM
Rohrer01, thanks you for all you said to me, Sorely I feel that all I know is so superficial.. I could only imagine some facts and solutions based over other facts, that I don't know if its are true or not.. it's so frustrating..
The post you have write, requires not only a high intelligence and sensibility.. all you said about science, trial and error, the different points of view in so few lines.. it requires also a great expression power.. you really make me jealous and it's not a way for thanks you what you said, its a fact.
In fact all people that participated in this thread and so many others I have read are very good and clever people, surely with different styles. I think is so difficult to keep a balance between logic and faith.. it seems to be logic that we need to heard something logic to keep the faith. I'm dealing with that matters.. my wife requires for me for much faith in professionals and not to 'torture' them with doubts, questions and suggestions they have never heard..
In a forum I prefer people with low faith and great logic, instead of people with a blind faith (for instance in doctors), but of course, an excessive faith in logic could also be only a more sophisticated kind of blind faith. But all different points of view must to be respected of course. When I wrote about Bresuss massage, some people told me what ridiculous seems to be what that people says, but in a respectful and funny way. I understand they don't want to heard nothing more about that massage and even I think it is a logic decision, if it that massage would exist in Argentina, I'll call that people and I'll listen what they says and if I could feel that they really believe that its true, I'll prove with myself. I think that could not be possible, but if I'm wrong?.. but you just talked in some way about that and better than I could do it.

Its great to know more about you and that you are finding what you need.

LindaRacine
04-11-2010, 06:52 PM
This is truly a shame! I agree that negativity should NOT be tolerated. Thanks, Michael for your input! Hiding is a good tool in any case. But this is terrible! We all need all the advice we can get.

No Negativity Allowed! This is the NON Surgical Forum where many therapies and methods are tried and shared! Nay sayers not allowed! :p

When did you get moderation power? ;-)

LindaRacine
04-11-2010, 06:58 PM
As you'll see, I've deleted all the posts that discussed religion. I think we're all a little tired of that old debate.

Mamamax, if you stop making unfounded claims, I'm fairly certain that Sharon will stop stalking you.

Sharon, there's no sense in trying to convince people about science. You can't protect everyone from potential charlatans, so please stop trying so hard.

--Linda

Pooka1
04-11-2010, 07:22 PM
Sharon, there's no sense in trying to convince people about science. You can't protect everyone from potential charlatans, so please stop trying so hard.

Roger that.

mamamax
04-11-2010, 07:51 PM
As you'll see, I've deleted all the posts that discussed religion. I think we're all a little tired of that old debate.

Mamamax, if you stop making unfounded claims, I'm fairly certain that Sharon will stop stalking you.

Sharon, there's no sense in trying to convince people about science. You can't protect everyone from potential charlatans, so please stop trying so hard.

--Linda

Seems the only people that have ever stated that I make "unfounded claims" are you Linda, and Sharon. I have never accused Sharon of "stalking" me ... is that what you consider it?

Now, Sharon saying that the Spinecor brace causes muscle atrophy .... that is an unfounded claim - actually it is a falsehood.

I find it rather sad that you feel the need to remove any posts discussing religion when the President of NSF (Joseph O'Brien) references the following interests in his public profile: http://www.scoliosis.org/forum/member.php?u=114



Interests
God, Family, golf, skiing, kayaking,billiards

Who's tired of the "debate" - you and Sharon? Spirituality is an important part in the lives of many, including the President of NSF. Expression of something important that helps us get through our daily lives with this condition - really shouldn't be forbidden.

Pooka1
04-11-2010, 08:05 PM
Expression of something important that helps us get through our daily lives with this condition - really shouldn't be forbidden.

No it shouldn't but you can't mix it or that type of magical thinking in with discussions of a serious medical condition. That is not helpful and in fact is a liability because that type of thinking is typified by elevating unfounded claims to "facts."

You do this continually and it is misleading in the extreme. You need to consider the desperate people who come on here looking for medical facts who DON'T want to be mislead.

mariaf
04-11-2010, 08:42 PM
I find it rather sad that you feel the need to remove any posts discussing religion when the President of NSF (Joseph O'Brien) references the following interests in his public profile: http://www.scoliosis.org/forum/member.php?u=114



Interests
God, Family, golf, skiing, kayaking,billiards

Who's tired of the "debate" - you and Sharon? Spirituality is an important part in the lives of many, including the President of NSF. Expression of something important that helps us get through our daily lives with this condition - really shouldn't be forbidden.



I really don't want to get into this debate, except to say that I honestly don't believe that just because the president of NSF references God/religion in his public profile, that should set the tone for the forum and its members. Those are HIS personal beliefs and should not have ANY effect on the forum.

mamamax
04-11-2010, 08:44 PM
No it shouldn't but you can't mix it or that type of magical thinking in with discussions of a serious medical condition. That is not helpful and in fact is a liability because that type of thinking is typified by elevating unfounded claims to "facts."

You do this continually and it is misleading in the extreme. You need to consider the desperate people who come on here looking for medical facts who DON'T want to be mislead.

To accuse me of continually being misleading in the extreme, and to infer that I have no consideration for others like myself who have scoliosis is ...

False Accusation to the nth degree.

hdugger
04-11-2010, 09:13 PM
The internet is a *huge* place - you really don't have to beat your head against a wall.

The NSF forums are useful for what they are (a place to get support and information about surgical treatment of scoliosis). If you want to discuss other treatments, it's so easy and cheap to open up a little bulletin board of your own.

The most commonly-used software is PHPBB, and you can host a forum for around $5 or $6 a month. There's information about it here - http://www.phpbb.com/hosting/index.php. You can make it as open or closed as you like. I'd personally recommend making it invitation only for 6 months or so, so that you can create you own culture and guidelines, and then open it up for general discussion.

You can continue to use this forum in whatever way is useful, but you'll also have a place to go if you want to have different kinds of discussions in a different kind of environment. Again, the internet is huge - it can support all kinds of different places.

I don't have the cycles to run something - my son is on the edge of taking over his scoliosis treatment himself - but I'd be happy to help set it up and try to deal with technical issues. I used to work for bulletin board software company, so I know my way around.

Anyway, really, there's no reason to *ever* talk about what kinds of discussions are acceptable. The internet is boundlless, and you can always find a spot to talk about whatever you want to talk about in whatever way you want to talk about it.

dailystrength
04-11-2010, 10:04 PM
I agree with Mamamax- in fact I was thinking it might be nice to have a "religion thread" where those of us of faith could explore how our feelings and thoughts about scoliosis intersects with it. I guess that will not be an option. For many of us, our faith is inseparable from our life experience, and we have many questions regarding our faith and our condition. If people are not interested, they don't have to read it, is what I would think. I do think it would interest many, from the threads I've seen. Long live free (respectful) speech! :)

I am sorry to tease about saying people can't say "mean" things. Yes, I was joking. However I do wonder why so much negativity is tolerated. The Forum, to me, should be a place we should be able to share freely and find open-minded people. Hope is what we need, even if it's not scientifically proven. Hope can even affect health; the mind/body connection is amazing. It can give us reason to go on trying. I too, was attacked for "conservatively treating" my curves, and asked to give "facts". The fact is that my SRS Surgeon told me to do so.

And a Forum is not a place to look for medical facts - a forum of patients is an open-ended discussion... I would hope no one comes looking here for medical facts! Web definition of Forum: "a public meeting or assembly for open discussion."

dailystrength
04-11-2010, 10:19 PM
The NSF forums are useful for what they are (a place to get support and information about surgical treatment of scoliosis).

Anyway, really, there's no reason to *ever* talk about what kinds of discussions are acceptable. The internet is boundless, and you can always find a spot to talk about whatever you want to talk about in whatever way you want to talk about it.

Well, then why do we have a Non-Surgical Category? I think if those with strong biases toward surgery respected the space for the non-surgical folks, we would all get along peacefully.

The NSF Forum is "the" Forum.... I wish people would use proper etiquette and respect. I have been attacked for merely mentioning methods my doctor prescribed. I have given no false information yet been attacked. We do not have answers, we have questions. I sincerely hope I can continue to experience support and also learn of methods others are trying. This is invaluable to me, and conservative treatment has been ordered by my SRS doctor. It's up to me to find the proper conservative treatment that works best.

hdugger
04-11-2010, 10:40 PM
The moderation rules of the forum are very clear in practice (and oft-stated) - post *style* is never moderated (although, clearly post *content* is). So, as long as people are roughly on-topic, the post will stand. If you need a different, less adversarial culture - then you really have to create it yourself in a different forum. You do not have the tools necessary to create it within this forum. That's neither good nor bad - it simply is.

On why there's a non-surgical forum, I really couldn't say. My experience has been that it's relatively safe to discuss non-surgical methods for pain relief, but any other application can get pretty dicey. You may *want* it to be otherwise, but, barring some bolt of lightening from the sky, the odds are 99.9999% that it's going to stay the way it is.

If you like that, fine. If you want something different, I strongly recommend you create it yourself. That doesn't mean that you can't use this forum. You can. But, if you *also* want a place where you can discuss the broad application of non-surgical methods in a non-contentious environment, this is simply not the place.

LindaRacine
04-11-2010, 10:53 PM
The only time people seem to get themselves in trouble is when they try to convince others to try "their" therapy. I personally don't understand why some seem to think they'll be validated if others try "their" therapy. By the way, that goes for surgery as well as other therapies. I personally have never felt the need to convince people to have surgery. If someone chooses surgery, that's their decision. I'm neither validated nor even remotely pleased about it. If something is working for you, that's great. Post about your own experiences without making it sound like you're shilling for the therapist, and I suspect you'll get a lot more respect.

mamamax
04-12-2010, 05:16 AM
The only time people seem to get themselves in trouble is when they try to convince others to try "their" therapy. I personally don't understand why some seem to think they'll be validated if others try "their" therapy. By the way, that goes for surgery as well as other therapies. I personally have never felt the need to convince people to have surgery. If someone chooses surgery, that's their decision. I'm neither validated nor even remotely pleased about it. If something is working for you, that's great. Post about your own experiences without making it sound like you're shilling for the therapist, and I suspect you'll get a lot more respect.

Isn't the whole point of a non-surgical forum to share methods which may bring relief? Does the last sentence above imply that there is a lack of respect for the non-surgical forum? What exactly defines "shilling"? Is it being happy to have found something that brings relief? If so, why would that standard only be applied to the non-surgical forum?

Pooka1
04-12-2010, 05:46 AM
To accuse me of continually being misleading in the extreme, and to infer that I have no consideration for others like myself who have scoliosis is ...

False Accusation to the nth degree.



I would like to apologize to you.

I don't think you are trying to mislead people. I think your magical thinking does help you and that there is research backing that up. I think you are applying that type of thinking to your treatment and then touting it beyond any objective evidence.

You have your evidence which is real to you. I believe people when they say they know there is a god or they know a conservative treatment is effective for anything other than pain. The problem is their knowing that is completely irrelevant and yes misleading to anyone else who thinks for themselves.

In my opinion, on a medical forum, once we acknowledge the evidence for the benefits of wishful thinking (i.e., placebo effect) and the lack of evidence for intercessory prayer, what else is left that is relevant to a serious medical condition? The topic is completely exhausted at that point unless people are here to also proselytize.

mamamax
04-12-2010, 06:02 AM
I would like to apologize to you.

I don't think you are trying to mislead people. I think your magical thinking does help you and that there is research backing that up. I think you are applying that type of thinking to your treatment and then touting it beyond any objective evidence.

You have your evidence which is real to you. I believe people when they say they know there is a god or they know a conservative treatment is effective for anything other than pain. The problem is their knowing that is completely irrelevant and yes misleading to anyone else who thinks for themselves.

In my opinion, on a medical forum, once we acknowledge the evidence for the benefits of wishful thinking (i.e., placebo effect) and the lack of evidence for intercessory prayer, what else is left that is relevant to a serious medical condition? The topic is completely exhausted at that point unless people are here to also proselytize.

Thank you Sharon, apology accepted. I want to answer your thoughts here, but since God has been mentioned - the post may disappear. If your post is still here when I get home from work this evening, then I'll comment further.

Pooka1
04-12-2010, 06:11 AM
Isn't the whole point of a non-surgical forum to share methods which may bring relief?

Yes pain relief. Conservative methods seem to have a better track record for that than surgical methods for subsurgical curves.

The problem is that the claims go beyond pain relief without any evidence supporting it. In decades and decades. That doesn't mean they won't one day be shown to be effective. I think there is some hope that certain braces help certain kids though I think the trigger angles for bracing might need heavy revision downward. And then we are into the territory where the great bulk of curves wouldn't progress anyway and might even regress on their own so it becomes harder and harder to pull a clean result out.

Clear exploits this reality by claiming people should start their therapy at very small angles. We know separately that most small curves do not become big curves and some regress. So even in the likely event the therapy is doing nothing it will appear to be ~90% effective. But the curves destined to get big will still get big and they can still claim only a ~10% Failure rate. They are sly.

dailystrength
04-12-2010, 08:46 AM
Thanks, Hdugger and Linda, for your thoughful replies. I will keep that in mind as I try my therapies, notably, Schroth, soon.
Respectfully, Christina

dailystrength
04-12-2010, 08:57 AM
Clear exploits this reality by claiming people should start their therapy at very small angles. We know separately that most small curves do not become big curves and some regress. So even in the likely event the therapy is doing nothing it will appear to be ~90% effective. But the curves destined to get big will still get big and they can still claim only a ~10% Failure rate. They are sly.

On a related note about Clear, I had a consultation with a Clear practitioner a year ago, who told me that scoliosis starts in the neck. I had never heard that. Especially since my larger curve, and the only curve I had as a teen, was in my lumbar spine, I have trouble accepting this-- probably for a good reason. I am under the impression that a pelvic imbalance has more to do with it. And which comes first, the chicken or the egg-- a leg length discrepancey (mine was an inch off at age 14), or the pelvis imbalance? Anyway, just thought I'd throw that out there. If strong opinions ensue, feel free to make a separate thread out of this. Just wondering....

Pooka1
04-12-2010, 09:04 AM
On a related note about Clear, I had a consultation with a Clear practitioner a year ago, who told me that scoliosis starts in the neck. I had never heard that. Especially since my larger curve, and the only curve I had as a teen, was in my lumbar spine, I have trouble accepting this-- probably for a good reason. I am under the impression that a pelvic imbalance has more to do with it. And which comes first, the chicken or the egg-- a leg length discrepancey (mine was an inch off at age 14), or the pelvis imbalance? Anyway, just thought I'd throw that out there. If strong opinions ensue, feel free to make a separate thread out of this. Just wondering....

That's an excellent point. I think Clear muddies the waters by purposely confounding chicken/egg issues and just skewing them in their favor based on no evidence whatsoever.

Good thinking. :)

mamamax
04-13-2010, 05:34 AM
I would like to apologize to you.

When I first read this I thought you were actually offering an honest apology. After a second and third read of what follows - I'm not so sure.


I don't think you are trying to mislead people. I think your magical thinking does help you and that there is research backing that up. I think you are applying that type of thinking to your treatment and then touting it beyond any objective evidence.

Maybe your opinion is a result of your bias against my treatment. Specifically, Spinecor? I'm just saying - objective evidence is in the eye of the beholder.


You have your evidence which is real to you. I believe people when they say they know there is a god or they know a conservative treatment is effective for anything other than pain. The problem is their knowing that is completely irrelevant and yes misleading to anyone else who thinks for themselves.

Interesting your post remains - maybe it is because you spelled God in initial letter lower case? The reality of my personal evidence regarding my treatment is hardly irrelevant to those like me who have scoliosis, have lived with it for over 49 years, and who like me have been brought to unbearable pain from the condition. Finding relief is hardly irrelevant nor misleading based on the fact that others like me have found similar relief. You state that this is "misleading to anyone else who thinks for themselves." I suggest this implies that maybe you think that anyone that does not agree with your way of thinking - does not know how to think for themselves. We disagree on that.


In my opinion, on a medical forum, once we acknowledge the evidence for the benefits of wishful thinking (i.e., placebo effect) and the lack of evidence for intercessory prayer, what else is left that is relevant to a serious medical condition? The topic is completely exhausted at that point unless people are here to also proselytize.

Do you also consider that the work of Martha Hawes involves wishful thinking, or the placebo effect? If so we better dump tons of money into research so everyone can duplicate the effect. Again, you reference something banned - discussion of prayer. You reference it in a negative way, and so it is allowed to remain. The topic is hardly exhausted and reading the boards this morning I find two more valuable members ready to bail because of your own unique brand of proselytizing.

Often in the non-surgical threads, you have advised people not to read (or respond to) what they do not like ... I suggest you take your own advice - and let those of us with scoliosis who are seeking non surgical treatments, do so ... we are not stupid and are quite capable of thinking for ourselves.

Thank you for your apology ... but it is rather like a left handed compliment. Just another means to overstate your point of view which involves refusal to think outside personal bias through the humiliation of others.

Pooka1
04-13-2010, 05:47 AM
objective evidence is in the eye of the beholder.

False.

.

.

mamamax
04-13-2010, 05:49 AM
False.

.

.

I disagree. Case in point: for every study which supports bracing, one can be found that refutes it. Etc etc etc ....

Pooka1
04-13-2010, 05:59 AM
We have objective evidence that the world is an oblate spheroid and is not flat.

We have objective evidence the earth travels around the sun.

We have objective evidence that the earth is 4.55 x 10^9 years old.

We have objective evidence that evolution is a fact.

Etc. etc. etc.

We also have flawed medical studies that are not evidence therefore they can't be objective or otherwise. They are simply flawed.

The dichotomy you are trying to get at I think is subjective versus objective evidence. Many people have subjective evidence for homeopathic remedies let's say but not a single one has any objective evidence that homeopathy works. Nobody does as it is self refuting.