Another One Bites The Dust

[mamamax]

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/healt...23_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]

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.

[Pooka1]

"Extraordinary claims require extraordinary proof." -- Carl Sagan

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

[michael1960]

Please Let Us Discuss Our Topics Openly Without Criticism and Closing Them

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]

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]

Hey Rohrer01,

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

http://drlloydhey.blogspot.com/2010/...rom-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]

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]

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 he’d 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]

Why then do you reference Dr. Hey? I think he’d 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]

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]

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]

How do you know? Have you asked him?

Well I assume he isn't a nut.

[MitoMom]

Arguments are a HUGE turn off

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]

Blocking Users - It Works!!

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

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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'.

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[michael1960]

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