Another One Bites The Dust

[mamamax]

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

[COLOR="Navy"][B]success story[/B]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 shortly after - It was one of the darkest days ever in this forum.

Joseph O'Brien was moved to post [B]Setting The Record Straight[/B]

After that, a fellow forum member, Concerned Dad, suggested that Linda open a thread where I could post [B]my story[/B] 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.[/COLOR]

[mamamax]

Correspondence with Sharon Dunn (Amazing Brace)

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]

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]

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]

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!

[dailystrength]

What an interesting site- thanks for that link. Hope you have a great weekend. We will be strong!

[rohrer01]

Dailystrength,
No need to "duck". You have a lot of nice things to say.

[MitoMom]

Try again?

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]

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.

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]

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]

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.

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

[LindaRacine]

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!

When did you get moderation power? ;-)

[LindaRacine]

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]

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]

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.