Setting the Record Straight

[Qikdraw]

I agree this thread is long past the point of productivity though I disagree with locking it. Too heavy-handed.

When a thread is long past the point of usefullness it does need to be locked. Thats not heavy handed, thats good moderating.

[mamamax]

When a thread is long past the point of usefullness it does need to be locked. Thats not heavy handed, thats good moderating.

Think this thread is hardly outworn its usefulness - much TRUTH being exchanged here

Beginning with Posting #1 - the best example of good moderation.

Lots of Setting the Record Straight going on here.

Off to the beach for the long weekend - Happy Memorial Day everyone - a time to remember our fallen soldiers. Always get that one mixed up with Veteran's Day. In any case, a somber time to remember those who sacrifice for our freedoms. Will check back Tuesday.

[Qikdraw]

Think this thread is hardly outworn its usefulness - much TRUTH being exchanged here

Beginning with Posting #1 - the best example of good moderation.

Lots of Setting the Record Straight going on here.

Off to the beach for the long weekend - Happy Memorial Day everyone - a time to remember our fallen soldiers. Always get that one mixed up with Veteran's Day. In any case, a somber time to remember those who sacrifice for our freedoms. Will check back Tuesday.

There is a lot of argueing going on, not truth. Truth is subjective, argueing is not.

Memorial Day... I found out something interesting about it. You guys use poppies and the 'In Flanders Feilds' poem for Memorial Day, but in Canada the poppies and the poem come out for Rememberance Day (Veterans Day to you, Nov 11th) I also agree with a lot of veterans groups that want Memorial day back on May 30th instead of making it a long weekend where people forget what the day is supposed to be about.

Anyway, Have a good weekend mamamax!

Brad

[debbei]

CD actually answers this comment better than I ever could Linda - Please see his Post 164 ... i think you have not read it yet.

I think actually - this forum needs/requires a second moderator for the non surgical forum.

CD would make a great one.

Write your Congressman folks!

Mamamax,

it sounds to me like you are bucking for the job. This whole thing is just distasteful.

[Writer]

Baloney.

What is distasteful is non mamamax's suggestion but the incessant "ideological brownshirt tactics" of several posters on this board regarding non-surgical treatments, to use the phrase of Ballet Mom in post #10 of this thread. They pay no attention to the instructions outlined in post #1 of this thread.

I agree that another moderator who is open to conservative treatments would be desirable. While Linda is technically very knowledgeable, she has not been controlling the brownshirts, but rather apparently sympathizing with them. The atmosphere has lightened slightly lately, but has been oppressive for over a year. Too many people such as Ballet Mom -- and I know others -- have felt compelled to make contacts offline for fear of being attacked if they express their opinions in an open post.

[Pooka1]

It is one thing to be open to conservative treatments.

It is quite another to claim they work with no robust evidence.

Nobody has a problem with the former.

I would hope everyone has a problem with the latter.

Conservative treatments don't automatically become efficacious just because folks don't want surgery. I think this point is lost on many.

[mamamax]

I think few would argue for the fact that treatments for scoliosis, which have no evidence should be seriously considered. Evidence being defined through long term studies. On the other hand, any successful treatment that someone has experienced first hand is something anyone with scoliosis (who does not elect surgery) would want to be aware of. Hence, the non-surgical board provided through NSF.

So, at the same time, i think we should not turn a blind eye to evidence that exists relative to non-surgical treatment (whenever possible, and here i do acknowledge that non-surgical treatment is not always possible - for some, surgery is the best and only answer). Obviously non surgical techniques are taken seriously on a global basis - hence, SOSORT.

Evidence does exist for other treatments which provide more relief than Yoga or Palaties (for those not electing surgery and barring extenuating circumstances (i.e., Martha Hawes, Schroth, and Spinecor - and in some cases Clear). There may be more - but this is all i am familiar with at this time.

The greater point (lost by some) may be that surgery is not always the only answer. And such evidence has existed for many years.

Martha Hawes covers these things far better than i have talent to express (Scoliosis and the Human Spine) - at the SOSORT 2009 meeting, Rivard and Collard come out and state emphatically (based on evidence & according to scientific guidelines) that their bracing system does change/effect the natural history of adolescent idiopathic scoliosis. For adults, Spinecor is proving promising .. this treatment only arriving on the scene for adults in 2005 .. much funding, willing research participants, and time - remain before we may deem it successful through long term study. An excellent presentation on Schroth at the SOSORT 2009 meeting as well. SEAS has been well documented.

These are things we need to be aware of - take seriously, research to the best of our abilities, and be able easily to share.

[Ballet Mom]

Well, I didn’t want to enter this conversation again, but since I’ve been brought up I simply wanted to say that I have not been compelled to make contacts offline, I have politely answered a few questions put to me by posters requesting a little specific information but that is all. I have not tried to make any contacts with anybody offline. As with any internet forum, I do not want to make my identity known. It’s a dangerous world out there, and people from all over the world are reading these forums. Kids, please note this and do not ever give out any personal information about yourself or where you live over the internet.

Making contacts is not why I read this forum. I’m trying to find out information to help my daughter with her scoliosis and especially how any treatment will affect or even help her with her ballet training. Obviously, I’m trying to avoid surgery for her as a fused spine is rather a significant problem for a professional ballet career and she is passionate about ballet at least at this point in her life, and she’s been doing ballet since she was four years old.

I appreciate the information that Linda was able to provide from Dr. Mendelow about Schroth, although I have to say the information seems to have been buried in all the other conversation. His comments are of great interest to me. Unfortunately, I also don’t think anyone on this forum should be being requested to provide who their physicians are or any other personal information. As I said, using the internet can be dangerous and any information provided online can be accessed at any time by anyone in the world and you have no control over it or what is done with that information after the fact.

If anyone is able to find the remarks from Dr. Mendelow, maybe it could be added to a Schroth thread or made into a new one so the information can be accessed by other people interested in Schroth. I know how hard it is to get any information from these surgeons on anything not surgically related.

Oh, and thank you all veterans for your service and sacrifice to our country. It is greatly appreciated.

[LindaRacine]

Well, I didn’t want to enter this conversation again, but since I’ve been brought up I simply wanted to say that I have not been compelled to make contacts offline, I have politely answered a few questions put to me by posters requesting a little specific information but that is all. I have not tried to make any contacts with anybody offline. As with any internet forum, I do not want to make my identity known. It’s a dangerous world out there, and people from all over the world are reading these forums. Kids, please note this and do not ever give out any personal information about yourself or where you live over the internet.

Making contacts is not why I read this forum. I’m trying to find out information to help my daughter with her scoliosis and especially how any treatment will affect or even help her with her ballet training. Obviously, I’m trying to avoid surgery for her as a fused spine is rather a significant problem for a professional ballet career and she is passionate about ballet at least at this point in her life, and she’s been doing ballet since she was four years old.

I appreciate the information that Linda was able to provide from Dr. Mendelow about Schroth, although I have to say the information seems to have been buried in all the other conversation. His comments are of great interest to me. Unfortunately, I also don’t think anyone on this forum should be being requested to provide who their physicians are or any other personal information. As I said, using the internet can be dangerous and any information provided online can be accessed at any time by anyone in the world and you have no control over it or what is done with that information after the fact.

If anyone is able to find the remarks from Dr. Mendelow, maybe it could be added to a Schroth thread or made into a new one so the information can be accessed by other people interested in Schroth. I know how hard it is to get any information from these surgeons on anything not surgically related.

Oh, and thank you all veterans for your service and sacrifice to our country. It is greatly appreciated.

Hi Ballet Mom...

The post is already in the Schroth thread. You can find it here.

http://www.scoliosis.org/forum/showt...t=8632&page=10

Regards,
Linda

[Ballet Mom]

How funny!

I guess that's why I was unable to find the comment!

[txmarinemom]

1. Keep reading. Keep researching. Remain focused. Look deeper.
2. USA physicians and business entrepreneurs are not waiting in line to market, sell, and recommend SpineCor for their patients, adult or adolescent--this is the point I was trying to make by mentioning Canada and the UK.
3. No evaluations and fittings the same day. How many times do you see a physician for a procedure and he or she just happens to have 3-4 hours to do the procedure that very day?

Joe's role is to provide us with up-to-date accurate information about all modalities, to maintain civility amongst members, and to keep us informed. It is not Joe's role, as President, whether a patient, too, or not, to endorse or dispel any one type of treatment.

Points I've made all along, NMFB. This thread was started by Joe in the first place because I asked questions about alliances and hawking certain treatments; I think it's a disservice.

Thank you for stating your views so eloquently.

[txmarinemom]

I have to disagree, MissEmmyF. I’ve heard plenty here…everything from paralysis to the tragic death of a young mother from Texas.

Chris, to set the record straight, that death - and yes, it was tragic - was caused by a MAJOR error on the part of Anesthesiology ... NOT fusion surgery.

And, funny ... in all the time I've been reading (vs. registered) here, paralysis has been reported as EXTREMELY rare.

[txmarinemom]

I am in total agreement with you on this, CD. BTW, when I returned to the forum after my surgery to report on my outcome, there was a PM in my mail box from a member suggesting that my doctor had been contacted regarding a statement I had made. What an invasion of privacy! Mamamax, you are very wise.

Chris WBS, although I have no idea if your claim that someone contacted your doctor is valid, I DO know you claimed here that a surgeon had told you fusion surgery was second only to AMPUTATION.

Maybe that had something to do with it (if, indeed, it happened).

[debbei]

Chris, to set the record straight, that death - and yes, it was tragic - was caused by a MAJOR error on the part of Anesthesiology ... NOT fusion surgery.

And, funny ... in all the time I've been reading (vs. registered) here, paralysis has been reported as EXTREMELY rare.

I am a worry wart by nature. Some of you know that from my posts before surgery However, prior to surgery I asked my Dr. outright. In 30 years experience, no one had died on his table and he had never paralyzed anyone. So I didn't concern myself with those things.

[Joe O'Brien]

Dear NMFB,

I have been travelling and tied up with other programs so I am not up to date on the postings in this thread. However, I welcome the opportunity to speak with you to learn more about who you are, and clarify my role and perspective. Please call me at 781-341-6333 if you would like to talk.

I have never considered myself a physician and have always fully disclosed that I am a patient who has been dedicated for thirty plus years to learning as much as possible to help my family and fellow patients. I have been blessed in this regard to be able to come to know and work with many of the top scientists, clinicians and surgeons dedicated to scoliosis throughout the world.

The primary mission of the National Scoliosis Foundation is the early detection and treatment of spinal deformities in order to minimize the effect they may have on children and families. Our daily service is to give Help & Hope to patients and families, and to educate, encourage and empower them to make the important healthcare decisions they will face in their journey. The combination of our mission and service encompasses every topic from genetic screening to the most recent surgical techniques.

Since before the time of Hippocrates there have been numerous methods to treat spinal deformities. None of these methods are foolproof or gauranteed. That includes Schroth, SpineCor, Stapling, and Spinal Fusion just to mention the most discussed items here. On the otherhand, each one of these methods have there purpose and role and may be appropriate and effective for a given patient. This Forum is not intended, nor capable enough, to diagnose and dictate to anyone what method they should or should not use. Hopefully, through thoughtful sharing of personal experience and honest respectful discussion of the facts and circumstances a peer to peer exhange can be an important resource.