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Dr. Stitzel
9th July 2009, 04:01 PM
Hello all,
My name is Dr. Clayton Stitzel (feel free to Google me) and I am a co-director of the CLEAR Institute (Check out our 5 min intro video!) which is a non-profit scoliosis research organization. Our treatment methods are completely dedicated to non-bracing and non-surgical focus. Why? Simply put, spinal bracing flat out doesn't work and the long-term consequences of surgery are probably worse than the disease itself. I'm not alone in these opinions. Many of the top researchers in the world have come to the same conclusions (please see the study summaries below)

A 2007 study published in SPINE by Drs. Dolan and Weinstein concluded that observation only or bracing showed no clear advantage of either approach. Furthermore one can not recommend one approach over another to prevent surgery. They gave the recommendation for bracing a grade "D" relative to observation only because of "troublingly inconsistent or inconclusive studies on any level."
Dr. Han Weiss, director of the Schroth clinic in Germany, published a highly regarded article in a 2008 edition of Disability and Rehabilitation. The study found "no evidence has been found in terms of prospective controlled studies to support surgical intervention from the medical point of view...... Until such evidence exists, there can be no medical indication for surgery. The indications for surgery are limited for cosmetic reasons in severe cases and only if the parent and family agree with this."
I am NOT here to pick fights, ruffle feathers, or judge peoples choices. However, I do intend to provide some alternative insights and thoughts into the disease of scoliosis itself, and therefore its treatment methodology.
I will not discuss personal patient data, render treatment advice, or respond to any personal attacks of any kind. However, I do encourage everyone to be a skeptic, without being a critic.
I hope we can develop a productive and stimulating discussion and the sharing of ideas that benefits patients and the scoliosis community alike. I believe ideas are some of the most powerful things in the universe.
I'm sure many of you already know the massive egos of many professionals working in this particular field can be a bit overwhelming......I am aware of that and will make every effort to keep mine in check......most of the time ;)

Simon
9th July 2009, 04:36 PM
Its Not A Disease ..

Dr. Stitzel
9th July 2009, 05:02 PM
The "benchmark" numbers in scoliosis (10 degrees, pathological diagnosis, 25 degrees... bracing, 40 degrees... surgery) were literally picked out of the thin air in a 1977
article by Dr. William Kane
(Clin. Ortho. Relat. Res. 1977 Jul-Aug; (126):43-6). Please feel free to look it up and read it.

Here is a quote directly from the article.....

"I would like to present certain statements which are admittedly arbitrary and may be contested."

And.....the article clearly states this benchmark measurements are based almost entirely on financial considerations and concerns about overwhelming the Canadian healthcare system (socialized medicine/ Nationalized medicine does promote minimalism in healthcare)

I kid you not. This is a disgrace and every scoliosis patient and parent of that patient should be outraged. :sbox:
Clin Orthop Relat Res. 1977 Jul-Aug;(126):43-6

Dr. Stitzel
9th July 2009, 05:06 PM
Its Not A Fu***ing Disease ..
Sorry to have touched a nerve Simon.......how would you like to classify it? Pathological spinal deformity? Again, I'm not here to pick a fight......just trying open up the airways to logical, rational, and productive discussion.

lyssie
9th July 2009, 05:12 PM
Well mines Idiopathic so I'm pretty sure that means the cause is unknown! And Simon's right - it's not a disease.

Dr. Stitzel
9th July 2009, 05:24 PM
Hi Lyssie,

80% of scoliosis cases are idiopathic, which simply means a "trigger" for the condition has not been identified....yet.

That doesn't mean an effective treatment can't be reverse engineered biomechanically.

I'm open to calling it whatever you want......disease is clearly offensive to your folks, so please tell me how you would prefer I classify it. Let me know and I'll start using the term you feel is acceptable.

In the medical world, it is considered a disease, but I'm willing call it whatever you want.

lyssie
9th July 2009, 05:32 PM
I'm pretty sure I've never heard my surgeon calling scoliosis a disease!

tonibunny
9th July 2009, 05:34 PM
Hello,

Do you have independent controlled studies to support the efficacy of your own treatment? It would be good to hear about them.

Also, do you really think that surgery is for cosmetic reasons only in all cases? Including congenital scoliosis, rapidly progressive infantile idiopathic scoliosis, and cases of neuromuscular scoliosis?

I had infantile idiopathic scoliosis, diagnosed at six months of age with very large curves. Casts and braces helped to hold those curves until I had surgery when I was ten, when I had my first surgery. They did the job they were intended to do, so I can't say they don't work :) I'm able to compare myself to friends on this and other sites who had similar cases of infantile scoliosis and ended up with severe problems with their internal organs because they didn't have any treatment, so I can't agree that this was purely a cosmetic procedure.

Rodsrme
9th July 2009, 05:41 PM
Dr. Stitzel,
Thank you for your input. I have seen a chiropractor before. You will not see me asking for any medical advice because I do not believe you have any to offer me. Please be careful with promises/information, most of these people have been through so much and could probably teach you a lot about scoliosis. We live with it. The VBulletin is the American site for scoliosis and they have a place for alternative treatment if you are looking to recruit new patients. http://www.scoliosis.org/forum/index.php We are here to support each other, no matter what we believe. If you do not mind me asking...do you have scoliosis or does any of your family? This is a support group for people with scoliosis, can we help you? :).

greenhouse12
9th July 2009, 05:52 PM
I have idiopathic \ adolescent scoliosis
All i know is they dont know what causes it but it gets worse when you start growing.

I wouldn't refer to scoliosis as a disease unless i was wheelchair bound , i think its a deformity.

Many people here have had great outcomes from surgery and its the last option for many people when it gets bad .
I am not against scoliosis research by the way all for it , as long as its safe and doesnt hurt any living creature .

Dr. Stitzel
9th July 2009, 05:59 PM
This is a copy of a letter I recently wrote in response to a newspaper article on scoliosis and exercise.

Please feel free to hack away at it for a while. I apologies in advance for referring to scoliosis as a "disease" in the original version.....I have replaced all such incidents with the term "spinal condition".

Just trying to play nicely.

The Article entitled “Exercise Can Reduce Scoliosis Symptoms” does a relatively accurate job of profiling the spinal condition and Dr. Edwards discusses various methodologies of managing and treating scoliosis. As the title implies, active rehabilitation of the spine can and will reduce symptoms of scoliosis, but the article omits is that active rehabilitation of the spine can reduce the scoliosis curvature itself. I have seen and read many of the studies showing how exercise protocols that include core strengthening exercises like sit-ups, chin-ups, and pelvic tilts have no effect on scoliotic curvatures, but those studies have over-looked a critical aspect of the spinal condition. Scoliosis is primarily a spinal condition of neurological control of the spine in response to gravity. In short, the brain is incorrectly perceiving gravity and therefore mis-orienting the spine accordingly. This is why scoliosis is 5 times more common in the blind population, but only 25% as likely in the hearing impaired population. However, neurological control doesn’t seem to be the only factor involved in the progression of the disease. Spinal curvatures under 20 degrees have an approximately 22% risk of progression, but the risk of progression jumps to 68% for curvatures 20-29 degrees. This dramatic jump in progression rates can probably be contributed to the increased “coil down” effect seen at this stage of the disease. No one seems to know why the “coil down” effect occurs, but it appears to be connected to adverse mechanical tension on the spinal cord. This also explains why the bending and rotation patterns appear to become “uncoupled” when the curvature reaches or surpasses the 30 degree angle mark. The normal coupled bending and rotation pattern normally forces the spinal cord over the outside of the curvature which increase tension on the spinal cord, but maintains a relatively low amount of torque in the spinal curvature; however, when the spinal curvature reaches 30 degrees or larger, the bending and rotation pattern become uncoupled and the rotation component begins turning towards the inside part of the curvature. While this has the effect of reducing the tension on the spinal cord by allowing the cord to travel through the inside part of the curvature, but has the negative effect of creating a massive amounts torque in the spinal curvature. This has a tremendously negative effect on the curvature and dramatically increases the “coil down” effect and curve progression.
So is the cause of scoliosis neurological or biomechanical? It seems early stage scoliosis (0-19 degrees) is rooted in a neurological mis-interpretation of gravity, however biomechanical factors involving spine torque (driven by a need to relieve adverse mechanical tension on the spinal cord) seem to be the driving force behind curve progression in spinal curvatures 20 degrees or greater.
“Exercises” in the form of neurological re-education and biomechanically specific exercise can have an positive effect on the signs and symptoms of scoliosis, but it must be applied in a very specific manner, by a trained and skilled physician.

bluestone
9th July 2009, 06:03 PM
My 13 year old is currently seeing a scoliosis specialist and the first thing he made very clear to her is that scoliosis is not a disease, its just the way we are-our genetic make-up.
Which is probably why she has inherited it from me.
I think she would have been unhappy if he had refered to it as a 'disease'.

tonibunny
9th July 2009, 06:05 PM
How about infantile idiopathic scoliosis? I had a thoracic curvature of over 60 degrees before I was even able to sit up.

Dr. Stitzel
9th July 2009, 06:12 PM
Hello,

Do you have independent controlled studies to support the efficacy of your own treatment? It would be good to hear about them.

Also, do you really think that surgery is for cosmetic reasons only in all cases? Including congenital scoliosis, rapidly progressive infantile idiopathic scoliosis, and cases of neuromuscular scoliosis?

I had infantile idiopathic scoliosis, diagnosed at six months of age with very large curves. Casts and braces helped to hold those curves until I had surgery when I was ten, when I had my first surgery. They did the job they were intended to do, so I can't say they don't work :) I'm able to compare myself to friends on this and other sites who had similar cases of infantile scoliosis and ended up with severe problems with their internal organs because they didn't have any treatment, so I can't agree that this was purely a cosmetic procedure.

Hi Tonybunny,

My mistake.....the study I was referring to was discussing Adolescent Idiopathic Scoliosis......infantile scoliosis starting under the age of 5 can lead to cor pulmonale which can be dangerous and life threatening....my mistake for not making that clear....I appreciate your pointing that out.

Dr. Stitzel
9th July 2009, 06:16 PM
Dr. Stitzel,
Thank you for your input. I have seen a chiropractor before. You will not see me asking for any medical advice because I do not believe you have any to offer me. Please be careful with promises/information, most of these people have been through so much and could probably teach you a lot about scoliosis. We live with it. The VBulletin is the American site for scoliosis and they have a place for alternative treatment if you are looking to recruit new patients. http://www.scoliosis.org/forum/index.php We are here to support each other, no matter what we believe. If you do not mind me asking...do you have scoliosis or does any of your family? This is a support group for people with scoliosis, can we help you? :).

Not trying to sell anything to anybody and I made it pretty clear that I am not attempting to render advice to anyone. I thought you folks might be interested in some thought provoking discussion about scoliosis and better treatment options in future. I guess I was wrong. What a shame.

Dr. Stitzel
9th July 2009, 06:18 PM
My 13 year old is currently seeing a scoliosis specialist and the first thing he made very clear to her is that scoliosis is not a disease, its just the way we are-our genetic make-up.
Which is probably why she has inherited it from me.
I think she would have been unhappy if he had refered to it as a 'disease'.

Hi Bluestone,

Can you please get the published information from your scoliosis specialist in regards to scoliosis being a genetic condition. I would LOVE to see that......I can't find it and neither can anyone else in the world. He/she must have the only copy. Happy hunting.

lyssie
9th July 2009, 06:22 PM
Adolescent Idiopathic Scoliosis isn't done for cosmetic reasons really I dont think, my surgeon made it clear to me what he was actually doing to my body and that involves working extremely close to the spinal cord! Why would a person be put through that if it wasn't benificial to their body physically? At 40 degrres as you say surgery is often suggested... but I had reached full growing maturity (a girl at the age of 17) so a brace would have done nothing for my curves and would have as my surgeon said got worse by *at least* a degree a year. My curve was at 45 degrees so work it out what would my curve be by the time I was 60 plus, with severe scoliosis and no surgeon wanting to operate on me then.

What do you think?

Little Ali
9th July 2009, 06:22 PM
Hi,

I have neuromuscular kyphoscoliosis as a result of Spina Bifida and my curves are increasing because my muscles are no longer able to hold my spine. It's now starting to impact on my breathing because I don't have the room to inflate my lungs fully. So, do you think the long term effects of surgery are worse than not being able to breath?

I really don't want to have another fusion because it'll impact on my mobility and independence but I can't find anything else that'll be as effective (other than the postural support for my wheelchair I'm getting soon) I don't like the way my scoliosis makes me look and any improvement would be a benefit of surgery, but it's certainly not for cosmetic reasons! I think you'd find it very difficult to find a surgeon who'd perform surgery for purely cosmetic reasons!

lyssie
9th July 2009, 06:23 PM
Well it's a pretty funny coincidence that I have it my mum has it my granny has it and my cousin has it!

Oh yes and my aunty!

p.s. I'm not saying it's a genetic condition but I personally believe it can be genetic! Having it run largely in my family!

tonibunny
9th July 2009, 06:34 PM
Hi Bluestone,

Can you please get the published information from your scoliosis specialist in regards to scoliosis being a genetic condition. I would LOVE to see that......I can't find it and neither can anyone else in the world. He/she must have the only copy. Happy hunting.

From the excellent NSF forum:

First Scoliosis Gene Identified (http://www.scoliosis.org/forum/showthread.php?t=5695)

bluestone
9th July 2009, 06:39 PM
Hi Bluestone,

Can you please get the published information from your scoliosis specialist in regards to scoliosis being a genetic condition. I would LOVE to see that......I can't find it and neither can anyone else in the world. He/she must have the only copy. Happy hunting.



Im not saying there is published information on this-he was simply saying its not a disease-just the way we are made.He was trying to be sensitive to a 13 year old.
Perhaps he was trying to be diplomatic-you could do with some of that!

Rodsrme
9th July 2009, 06:44 PM
Hi Bluestone,

Can you please get the published information from your scoliosis specialist in regards to scoliosis being a genetic condition. I would LOVE to see that......I can't find it and neither can anyone else in the world. He/she must have the only copy. Happy hunting.

I have been told by my surgeon that I would have an increased risk of having children with this condition. Here is what I have found. :D

http://www.tsrhc.org/scoli.htm

bluestone
9th July 2009, 06:51 PM
Hi Bluestone,

Can you please get the published information from your scoliosis specialist in regards to scoliosis being a genetic condition. I would LOVE to see that......I can't find it and neither can anyone else in the world. He/she must have the only copy. Happy hunting.


If you dont think genetics are anything to do with scoliosis what explanation would you give as to why it runs in familys?

Simon
9th July 2009, 06:53 PM
from two chiros allegedly trained at the CLEAR Institute.

Most interesting are the statements about surgery:

"Surgery includes implanting a Harrington rod for the correction of the disease. However, after many complications, including rusting and corrosion, bending, or breaking completely, proved that this method is ineffective. Some sufferers undergo surgery again to remove the rod. Every year thousands of post-surgery patients are legally defined as permanently disabled for the rest of their lives, and follow up x-rays in some cases reveal that their scoliosis returned to pre-operative levels. "

At best, the description of current surgical techniques is outdated (by, oh, about 15 years or so ...).

At worst, it's a deliberate, manipulative falsehood designed to round up patients for quakery (ala "Copes").

Personally, either one (whether they're uninformed or liars) would make me run the other way. It's just infuriating to see "so-called professionals" prey on parents and patients (and ultimately, your insurance company) with snake oil.

I know as parents we are willing to try almost anything to help our kids, but I'd have a really difficult time buying into their claims (especially with the first hand stories here).

Who Wrote these

Dr Skitz

Rodsrme
9th July 2009, 06:58 PM
In my family I have two with a hemivertebrae, cousin barely missed spina bifada, mom has slight scoliosis and hand deformity, great grandpa with leg length discrepency, I have idiopathic kyphoscoliosis and a leg length discrepency of 2 cm.(NOT caused by my scolioisis, totally seperate condition). I truely believe it is caused by genetics. ;)

tonibunny
9th July 2009, 07:01 PM
It looks like you picked that up from NSF too, Simon.

There's a lot of people there who have experience of Dr Stitzel's treatment method. Here is a thread if anyone is interested:

NSF Forums: Clear Institute - Been there, done that (http://www.scoliosis.org/forum/showthread.php?t=5652&highlight=clear+institute)

Simon
9th July 2009, 07:04 PM
Yes Toni

Theres a lot of people out there that dont like the clear institute Intresting post on page 6 of the nsf board that you commented on was going to post it on here but let the others read it .

Rodsrme
9th July 2009, 07:06 PM
Interesting article Toni. Thanks for sharing! :D

Dr. Stitzel
9th July 2009, 08:16 PM
I am not expressing my personal opinion on the subject. I am only sharing what Dr. Has Weiss had concluded in his exhaustive literature review of peer reviewed research articles. You can draw your own conclusions, but Dr. Weiss is regarded as one of the world's foremost experts on scoliosis.

I am not trying to critize anyone's personal health care choice. The level of raw emotional responce I am getting from the members of this forum is a little concerning. No one is attacking you, so why is everyone being so defensive? That is a rhetorical question.

I am only attempting to provide information which provides a legitimate alternative viewpoint. Surgical intervention doesn't increase pulmonary function or cadiac output. It doesn't decrease pain. It doesn't improve any measure of organic health. It decreases cobb's angles (which ranks 12th out of 21 on SOSORT's list of treatment importance for scoliosis) and that is about it. Hence, the only relavent treatment outcome is cosmetic (again, speaking in regards to AIS only).....Essentially, scoliosis patients are being asked to trade deformity for dysfunction...which the long-term outcomes research seems to indicate.....leads to chronic pain.


Again, this summary "snip it" only applies to AIS.....I encourage you to read the entire article, before reaching a conclusion on the subject.

Dr. Han Weiss, director of the Schroth clinic in Germany, published a highly regarded article in a 2008 edition of Disability and Rehabilitation. The study found "no evidence has been found in terms of prospective controlled studies to support surgical intervention from the medical point of view...... Until such evidence exists, there can be no medical indication for surgery. The indications for surgery are limited for cosmetic reasons in severe cases and only if the parent and family agree with this."
Honestly, I'm not here to pick fights. I'm not trying to talk anybody into or out of anything. I am not trying to sell anybody anything (although in full disclosure, I do provide treatment services to scoliosis patients).
I just want parents and patients to make well informed decisions when making a choice about treating their spinal condition. That's all.
Would you hide this level and magnitude of information from the scoliosis community if you came upon it? I hope not, but that is a personal decision I guess.

Dr. Stitzel
9th July 2009, 08:29 PM
Yes Toni

Theres a lot of people out there that dont like the clear institute Intresting post on page 6 of the nsf board that you commented on was going to post it on here but let the others read it .

Too bad all the positive posts from patients whom have benefited from treatment are unfairly attacked and ceremonially removed. Unfortunately, politics is more important than the truth in many circles.

CLEAR isn't a cure. It is a treatment. Currently is no cure for scoliosis, but that doesn't mean we should stop trying for find one.

I'm more than happy to address any serious questions or misconceptions about the CLEAR institute approach to scoliosis treatment. I don't have time to fend off emotionally based attacks and don't intent to even bother responding to them.

No one bats 100% and CLEAR is no different. The majority of the problems we run into with curve regression using our treatment methods is lack of patient compliance with the home rehab recommendations following the "in office" treatment plan. Of coures, rapid growth spurts, spinal trauma, and/or engaging in compressive spinal loading activities are common causes for losses in treatment gains as well.

Scoliosis is a life long journey, but vast majority of the fight needs to be done until the patient reaches skeletal maturity.

lyssie
9th July 2009, 08:30 PM
I actually had pectus excavatum and as my heart was already being pushed to the left and backwards as a result of the pectus excavatum *and* the scoliosis, had my scoliosis been left to worsen could have affected my heart seriously! The pectus excavatum alone would not have done this to my heart! I had procedures to correct both of these conditions and do believe the scoliosis correction and fusion surgery as said by BOTH of my surgeons has been massively helpful to my health!

Dr. Stitzel
9th July 2009, 08:36 PM
Hi Tonybunny,

I answered this on a different thread, but I do consider surgery a necessary treatment method in some cases of infantile scoliosis (age 5 and younger) where cor pulmonale is a concern.

Great question......keeps me on my toes.

Believe it or not, I'm a pretty reasonable guy about this stuff. I am just hoping we can put our collective heads together and come up with a better solution in the future.

What about an active rehab early stage intervention approach? What do you think?

Little Ali
9th July 2009, 08:41 PM
. Surgical intervention doesn't increase pulmonary function. It doesn't decrease pain.

If the spine is so curved that it isn't allowing full expansion of the lungs and full lung capacity to be reached, I fail to see how straightening out the spine to enable this doesn't improve pulmonary function. I think there are plenty of people on here who will disagee that surgery doesn't decrease pain. Ok, maybe not in all cases and it's not guranteed but it can.

Dr. Stitzel
9th July 2009, 09:00 PM
Hi,

I have neuromuscular kyphoscoliosis as a result of Spina Bifida and my curves are increasing because my muscles are no longer able to hold my spine. It's now starting to impact on my breathing because I don't have the room to inflate my lungs fully. So, do you think the long term effects of surgery are worse than not being able to breath?

I really don't want to have another fusion because it'll impact on my mobility and independence but I can't find anything else that'll be as effective (other than the postural support for my wheelchair I'm getting soon) I don't like the way my scoliosis makes me look and any improvement would be a benefit of surgery, but it's certainly not for cosmetic reasons! I think you'd find it very difficult to find a surgeon who'd perform surgery for purely cosmetic reasons!

Hi Little Ali,

Obviously your have extenuating circumstances.....which require extenuating measures. This Dr. Weiss' article was referring to AIS only. Sorry I didn't make that clear.

Mustang Sal
9th July 2009, 09:02 PM
Surgical intervention doesn't increase pulmonary function or cadiac output. It doesn't decrease pain. It doesn't improve any measure of organic health.

I'm sorry, but where did you glean that information from? Have you ever actually spoken to anyone who's had scoliosis surgery? Scoliosis surgery DOES decrease pain in the majority of people - if it didn't, why would the surgeons go ahead and do the surgery? They're not cosmetic surgeons! As for pulmonary function, just speak to people whose curves became severe due to lack of surgical intervention and see how good their lung function is. Ok, some people who've had surgery still have pulmonary and heart problems, but you can be sure that if an already severe curve is allowed to get worse, that side of things will surely get even worse too. Surgery is not a miracle cure, but it can halt the progression of other serious problems brought about by the curve.



although in full disclosure, I do provide treatment services to scoliosis patients

Funny that...


Sorry if i'm coming across as hostile in any way, but unsubstantiated statements like the one I commented on above is, i'm afraid, going to get some backs up.

Dr. Stitzel
9th July 2009, 09:28 PM
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I'm sorry, but where did you glean that information from? Have you ever actually spoken to anyone who's had scoliosis surgery? Scoliosis surgery DOES decrease pain in the majority of people - if it didn't, why would the surgeons go ahead and do the surgery? They're not cosmetic surgeons! As for pulmonary function, just speak to people whose curves became severe due to lack of surgical intervention and see how good their lung function is. Ok, some people who've had surgery still have pulmonary and heart problems, but you can be sure that if an already severe curve is allowed to get worse, that side of things will surely get even worse too. Surgery is not a miracle cure, but it can halt the progression of other serious problems brought about by the curve.




Funny that...


Sorry if i'm coming across as hostile in any way, but unsubstantiated statements like the one I commented on above is, i'm afraid, going to get some backs up.

Hi Mustang Sally,

I would never make an unsubstaniated statment like that with data.......None else seems to be providing proof for their substantiated statement either......no worries....here you go..... I'm not trying to fool anybody. I just want everyone to know the other side of the coin before they make an life long treatment decisions.......I don't have any other motives.

Results of surgical treatment of adults with idiopathic scoliosis.
J Bone Joint Surg Am 1987 Jun;69(5):667-75
Sponseller PD, Cohen MS, Nachemson AL, Hall JE, Wohl ME.

The outcome of surgical treatment of idiopathic scoliosis in forty-five adults was studied with special attention to pain, function, self-image, and pulmonary function. All of the patients were more than twenty-five years old at operation and had been followed for more than three years. Every patient who was operated on by one of us (J. E. H.) and who met these criteria was evaluated. The magnitude of the curves averaged 66 degrees. Standardized gradations of pain and function showed improvement over-all, but significant impairment remained. There was a reduction in the levels of peak and constant pain, but no change in the frequency of peak pain after operation. The number of patients who were pain-free after surgery was not increased. Functional impairment due to the scoliosis was lessened, and the ability to perform the common activities of daily living was improved, but no important changes in occupation or recreational activity were recorded. Correlations of pain or function, or both, and the changes in either, were found with only two parameters: age at follow-up and physical occupation. Pulmonary function, as measured, did not change. Eighteen (40 per cent) of the patients had a minor complication and ten (20 per cent), a major complication; there was one death, due to pulmonary embolism, of a patient who was excluded from the series. In view of the high rate of complications, the limited gains to be derived from spinal fusion should be assessed and clearly explained to patients before the procedure is undertaken.

Ellie
9th July 2009, 09:44 PM
My two pennyworth,

Most of the people on here welcome information from the medical community, but as this is a 'support' group it needs to be done in a sensitive manner. Unfortunately, whether it is your manner of writing or a personal thing you are coming across as aggressive.
This could be a problem if you are trying to help people!

Anyone with a problem will respond emotionally to the type of comments you have been making.

As said before most of the people on this site either have scoliosis or have children with it. This makes us a specialist group. Some of us have lived many years with challenges and are prepared to share the good and the bad with others, all help is offered with the proviso of this helped me or hindered me, take a look at the information and make the best choice for yourself, your life and expectations. No pressure.

I personally did not go the surgery route and so cannot comment on this method. I have managed my quality of life for the last 30 years, but recently have started to experience breathing problems, which may mean I will decide to have surgery.

From my reading of other peoples experiences, everyone here at least, does their utmost to gather as much information prior to ANY treatment they undertake. No-one undertakes surgery lightly. They listen to their consultants, weigh up the alternatives and make the best decision they can. No one knows what will happen in the future or how each individual will react to treatment, so it is all a lottery.

My own investigations indicate that we are dealing with a complicated beast and that some families appear to be prone to problems with spines, there appears to be some good evidence pointing to an infection triggering the condition with certain people, (maybe with a particular gene). Accidents could have a bearing too!
At the present time we are all as mystified as each other.

I am sure that many of us are happy to assist research into this condition but we would appreciate it being done sensitively, without condemnation for the choices we have or are about to make.

By the way, I work in the medical research community and spend a lot of time with academics, patients and commercial interests, gathering and collating information.

I am sorry that this is garbled, but although at work I can analyse information quite unemotionally, here is the place I come for emotional support :)

Maybe if you approach this differently you could help both sides. :)

tonibunny
9th July 2009, 10:03 PM
To be honest, that source is pretty positive regarding surgery isn't it? :)

"Standardized gradations of pain and function showed improvement over-all" and
"impairment due to the scoliosis was lessened, and the ability to perform the common activities of daily living was improved".

I wouldn't expect there to be any significant reduction in lung function with curves of 66 degrees. We usually find noticeable lung probs start at about 90 degrees; usually people have surgery to halt their curves so they never progress and reach that sort of size.

HOWEVER! I do agree it would be fab to find an alternative to fusion surgery. The currently available nonsurgical alternatives all seem to require huge expense, lifelong commitment to daily exercise (even when elderly/infirm/pregnant), and have no independent clinical studies to support their efficacy. Many have been devised by people who are not medically qualified doctors. If these problems could be overcome, I'm sure a lot more people would want to try them.

In addition, there have been cases where fraudsters have jumped onto the alternative bandwagon, giving those with honest intentions a bad name. It isn't really surprising that the scoliosis community in general is so hard on those who practice alternative treatments - everyone is scared of being ripped off or given false hope!

For teenagers with moderate curves, Vertebral Stapling looks promising - but again that's a surgical technique.

mark
9th July 2009, 10:07 PM
Like Toni says, i wish there was a way to cure this curse we all live under that does not involve surgical intervention and i think if one was proven to be succesful long term then not so many of would be going under the knife. I can see both arguments, i just wish a balanced centre ground could be found that would allow both invasive and non invasive techniques to live hand in hand. If someone could could up with an amazing non invasive cure then i would be first in the cue but alas i don't think i will see that utopia in my life time. I just wish i had the answer, but then if i did i would be a very rich man, alas i'm still poor and likely to remain so

Dr. Stitzel
9th July 2009, 10:14 PM
My two pennyworth,

Most of the people on here welcome information from the medical community, but as this is a 'support' group it needs to be done in a sensitive manner. Unfortunately, whether it is your manner of writing or a personal thing you are coming across as aggressive.
This could be a problem if you are trying to help people!

Anyone with a problem will respond emotionally to the type of comments you have been making.

As said before most of the people on this site either have scoliosis or have children with it. This makes us a specialist group. Some of us have lived many years with challenges and are prepared to share the good and the bad with others, all help is offered with the proviso of this helped me or hindered me, take a look at the information and make the best choice for yourself, your life and expectations. No pressure.

I personally did not go the surgery route and so cannot comment on this method. I have managed my quality of life for the last 30 years, but recently have started to experience breathing problems, which may mean I will decide to have surgery.

From my reading of other peoples experiences, everyone here at least, does their utmost to gather as much information prior to ANY treatment they undertake. No-one undertakes surgery lightly. They listen to their consultants, weigh up the alternatives and make the best decision they can. No one knows what will happen in the future or how each individual will react to treatment, so it is all a lottery.

My own investigations indicate that we are dealing with a complicated beast and that some families appear to be prone to problems with spines, there appears to be some good evidence pointing to an infection triggering the condition with certain people, (maybe with a particular gene). Accidents could have a bearing too!
At the present time we are all as mystified as each other.

I am sure that many of us are happy to assist research into this condition but we would appreciate it being done sensitively, without condemnation for the choices we have or are about to make.

By the way, I work in the medical research community and spend a lot of time with academics, patients and commercial interests, gathering and collating information.

I am sorry that this is garbled, but although at work I can analyse information quite unemotionally, here is the place I come for emotional support :)

Maybe if you approach this differently you could help both sides. :)

Well put and thought out Ellie. It is not my intension to offend anyone......only shake things up a little. The emotional knee jerk responces I have gotten today indicate a lot of healing needs to contiue to be supported by forums like this one.

I will return to my treatment related topic focused forum and stop interjecting an alternative view point that many people here aren't ready or willing to hear at this point.

Anyone and everyone is welcome to also join www.fixscoliosis.com (http://www.fixscoliosis.com) if you would like to engage in a more "treatment related" conversation forum.

I hope some of this conversation has stimulated some readers to think outside the box and search for a better way in the future. I apologize for any hard feelings I may have caused.
Best of health to all in the future.

Ellie
9th July 2009, 10:26 PM
What about an active rehab early stage intervention approach? What do you think?

There have been many discussions on this site re core strengthening exercise. Pilates, Yoga, doing the 'side plank' to strenghten obliques etc. All valuable if done correctly with the assistance of a good physio. (therein lies the first problem).

Access to services. (or at least in the UK).
The length of time it takes to be seen by anyone once you have convinced the GP that it is necessary.
(remember that the cost of private medicine in the UK is prohibitive to many) plus to get some private investigations done requires a GP to sanction it.

This site provides a brilliant service in the sticky providing names of consultants who understand Scoliosis and where they practice.

I hear what you are saying when you mentioned that a lot of the exercise type treatments are fine whilst under close supervision of the medics, but once people go home they start to relax the programme. You have to remember that we are human and that with the best will in the world we all need support. Take a look at alcoholics, drug addicts, dieters. They all have the same problem. Great whilst supervised and in a special place, but once home the pressures of daily life come into play.

We should be looking at the support networks around people. Back in the good old days I used to see the consultant who advised physio and I went to physio within a day or two! The last time this happened there was a three month waiting list! Despite the consultant saying it was 'urgent'. I don't know how long you have to wait now?

How do you envisage an early intervention system working with the NHS! (not just for children, but for adults too)?

Ellie
9th July 2009, 10:36 PM
Well put and thought out Ellie. It is not my intension to offend anyone......only shake things up a little. The emotional knee jerk responces I have gotten today indicate a lot of healing needs to contiue to be supported by forums like this one.

I will return to my treatment related topic focused forum and stop interjecting an alternative view point that many people here aren't ready or willing to hear at this point.

Anyone and everyone is welcome to also join www.fixscoliosis.com (http://www.fixscoliosis.com) if you would like to engage in a more "treatment related" conversation forum.

I hope some of this conversation has stimulated some readers to think outside the box and search for a better way in the future. I apologize for any hard feelings I may have caused.
Best of health to all in the future.

Thankyou for taking on board the comments and I hope that they help when dealing with others on other sites.
Yes there are a few who react sharply, but as others have said before, we have been led up the garden path before and are cautious about others. We all want a miracle to come along and sort this out, we realise that we could be years away from one (hence the frustrations).

It would be a shame if you felt 'chased away' as you are now starting to calm down your tone and I am sure that you will find people contributing more.

Simon
9th July 2009, 10:39 PM
Evalina Burger (20 December 2007) University of Colorado Hospital email

I read with high interest the case report by Dr. Weiss on a young patient who deteriorated after surgery for adolescent idiopathic scoliosis (AIS). Despite the lack of detailed reporting on parameters which influence the decision making for surgery, such as the Risser sign, I agree with author that the fusion levels selected in this patient were probably inadequate, leading to a residual imbalance. However, the presentation of the discussion appears almost as imbalanced as the patient described in this paper, due to an obvious, unjustified bias by the author against surgery for scoliosis.

A large percentage of patients with scoliotic curves of more than 45 degrees will deteriorate without surgery. Spontaneous regression is reported in a small number of patients with AIS. The long-term effect of truncal imbalance can lead to debilitating pain. Even though patients with untreated scoliosis seem to function well as adults, it comes at a high price, as patients in modern day society tend to stay more active and may present with debilitating long-term pain.

Outcomes have been scientifically documented through the Scoliosis Research Society (SRS) outcome tools (Berven et al., Spine. 2003;28:2164-9). The most recent literature has clearly demonstrated beneficial outcomes after surgery for scoliosis (Bridwell et al., Spine. 2007;32:2220-5). In contrast to these recent findings, which are not referenced in the present paper, the citations used by the author are predominantly outdated. Furthermore, the author should make a clear distinction in the discussion between the complication rates reported for adults vs. adolescents. These are two very distinct groups with completely different outcomes and complication rates. With regard to the “key” reference used throughout this paper (ref #5), this particular article is based on pediatric (infantile) scoliosis and unrelated to the AIS case presented in the present article.

In summary, the important aspect of patient safety for scoliosis patients merits an unbiased, evidence-based scientific decision making process which should be independent of the subjective preferences by the treating physician.

Competing interests

NONE

top
Adolescent Idiopathic Scoliosis – an indication for surgery?

Hans-Rudolf Weiss (30 December 2007) Asklepios Katharina Schroth Klinik

I´d like to thank Evalina Burger for her input regarding my case report published in Patient Safety in Surgery. Indeed, the Risser sign was missing in the case presentation which was grade IV not promising a significant residual growth in relation to this relatively small curve operated on of 28 degrees with a generally benign prognosis. However menarchial status documented here also shows there was little residual growth left before the operation was performed.

In an unbiased comment I would have expected a statement that in this benign curve obviously no indication for surgery is given. I would have expected that Dr. Burger to be aware of the fact that the paper cited as reference #5 [1], although being published in Pediatric Rehabilitation, is related to Adolescent Idiopathic Scoliosis (AIS) in the first place, and by no means can be attributed as “outdated”.

This paper [1] clearly demonstrates the lack of scientific knowledge about the long-term effects of surgery for AIS. I am personally not aware of any scientific publication which demonstrated that surgery for scoliosis has saved a single life. The above-mentioned reference [1] also shows that signs and symptoms of scoliosis cannot be cured by surgery. But if this is the case, how can someone claim for a medical indication for surgery in patients with AIS?

Recently, a paper [2] was published with a prospective design, showing that the rate of complications is more than 3 times higher in the short-term (>15%) than previously expected (<5%). How big would the long-term re-operation rate be when someone would have a long-term prospective study instead of retrospective ones already showing the re-operation rate might be as high as 40% [1]. Do we know how the instrumented spine behaves in the elderly? How long does the cosmetic effect of an operation last? Is there a prospective controlled study clearly showing that scoliosis surgery really prevents progression in the long term? Does the patient really feel more sick when having 10 degrees more in 20 years?

Today, from the patients perspective, we do have more open questions than answers when we look into the subject of spine surgery in patients with AIS.

Unfortunately outcomes measured with the help of questionnaires [3] do not provide evidence enough to justify a risky procedure:

Studies containing psychological questionnaires may be compromised by the dissonance effect [4-8], which applies to all situations that include important decisions to be made. Cognitive dissonance occurs most often in situations where an individual must choose between two incompatible beliefs or actions and there is a tendency for individuals to seek consistency among their cognitions. Unable to face an inconsistency, such as being dissatisfied with a surgical procedure, a person will often change an attitude or action. Surgery is impossible to reverse, but subjective beliefs and public attitude can be altered more easily. That means a patient not satisfied with a surgical treatment may not necessarily publicly admit this, as Moses et al. have described in their paper [8].

There is also a spine surgery related paper [9] highlighting the problem with such questionnaires: ”Patient satisfaction is subjective. It does not reflect the benefits of surgery with respect to the future preservation of pulmonary function in thoracic curves nor the prevention of osteoarthritis in lumbar curves.”

And another [10] also discussing the problems with such reports: “Radiographic and physical measures of deformity do not correlate well with patients' and parents' perceptions of appearance. Patients and parents do not strongly agree on the cosmetic outcome of AIS surgery.”

From all of the studies based on questionnaires, no evidence can be derived that supports the assumption that patients have experienced benefits from undergoing surgery, as none were able to rule out the cognitive effect of dissonance. Without being able to rule out such effects on the post-operative experience these outcomes do not appear to be valid [8,9,10].

Finally, to come back to the paper which Dr. Burger presents as a “proof” for a beneficial effect of surgery in patients with scoliosis [3]: This is only a two year follow-up which has nothing to do with the long-term negative effects the patients might suffer from and today still are not even revealed. Therefore I´d like to cite an outdated paper at this place, but there is no new evidence that speaks against it:

In view of the high rate of complications, the gains to be derived from spinal fusion should be assessed and clearly explained to patients before the procedure is undertaken [11].

I do agree that patient safety for scoliosis patients merits an unbiased, evidence-based scientific decision making process which should be independent of the subjective preferences by the treating physician. In view of the very many open questions, the lack of medical benefit and the high amount of long-term risks of the surgical procedures applied [1] the only possible way of decision making can be: Let the patient decide after providing all the objective facts available.

Last but not least there is a question which remains to be answered: Is the decision making process in a surgeons office independent of subjective preferences, when the surgeon has an affiliation to industry which benefits from the implants used for surgery [12]?

mark
9th July 2009, 10:39 PM
Hi Ellie

Thanks for such a balanced well thought out post. I completly agree with everything you have said, the nhs is so underfunded and unfortunately they seem to see scoliosis/kyphosis as a non life threatning condition so we who suffer always get short changed when it comes to treatment plans

Where on a no win situation the cost of surgery is so expensive and other conditions seem to take priority when it comes to physio we have to look to the private sector which is to the average person is expensive and needs a massive commitment from the patient where in a catch 22 situation

i wish i knew the answer

Ellie
9th July 2009, 10:49 PM
Thanks Mark.
I have found that many medics do not understand this condition, and although as you said it is not life threatening (unless inards get cramped).
My own GP admitted he knew little about it and still hasn't bothered looking it up! this annoys me as even wikipaedia as quite a good explanation.
Hence he does not know what to do with me. (I am sure I am not the only person in this position). I was the one who suggested I see a consultant! Even mentioning someones name. But I had to go through the 'choose and book' system which suggested three hospitals non with a specialist spinal unit! (in fact one had completely closed). I insisted and got to the hospital I wanted but not the consultant!
All rather unsatisfactory.

Ellie
9th July 2009, 11:02 PM
on the private front I asked if I could have an MRI scan and the GP said what for!
So I approached a private hospital and was quoted £550 for the two part scan if I paid, if I have insurance it would be closer to £700, (thought that was interesting more for the insurance co?????) but I need to have a referal from my GP, who obviously thinks it a waste of time!

Mustang Sal
9th July 2009, 11:07 PM
Thanks Mark.
I have found that many medics do not understand this condition, and although as you said it is not life threatening (unless inards get cramped).
My own GP admitted he knew little about it and still hasn't bothered looking it up! this annoys me as even wikipaedia as quite a good explanation.
Hence he does not know what to do with me. (I am sure I am not the only person in this position). I was the one who suggested I see a consultant! Even mentioning someones name. But I had to go through the 'choose and book' system which suggested three hospitals non with a specialist spinal unit! (in fact one had completely closed). I insisted and got to the hospital I wanted but not the consultant!
All rather unsatisfactory.

That is quite shocking Ellie. I know GPs can't know every medical condition in detail, but they should at least know the basics (their job title is 'general' practitioner after all) and also be willing to investigate things and look them up if they're not sure. Sounds like you got a duff one :( I finally found a brilliant GP at my surgery, I was so pleased. Only she's gone and left now!! Always the way isn't it.

I hope you manage to see someone who knows what they're talking about.

GloomCookie
9th July 2009, 11:20 PM
Oh this thread's in two different forums is it? Perhaps I should copy and paste my response over from Non Surgical.

Honestly, I go away for a few weeks and someone goes and cures scoli ;)

Ellie
9th July 2009, 11:24 PM
I know. I am considering changing my surgery!
The story does get worse! but it just depresses me :)

Mind you I did put a rocket up the PCT re the Choose and Book! You would be proud of me!
I worked for them at the time and via an internal system I went straight to the Medical Director! Gave them a piece of my mind. (and a bit more) Hence the invite to visit them.

Ellie
9th July 2009, 11:31 PM
you may as well join us here as he seems to have gone!

oh and sorry to dissapoint but no cure yet! :)

GloomCookie
9th July 2009, 11:39 PM
you may as well join us here as he seems to have gone!

oh and sorry to dissapoint but no cure yet! :)

I know no one's claiming to have cured it, before I get medical professionals jumping down my throat, but I do find it hard to take people seriously when their website seems to be mostly about misleading vulnerable young people about the dangers of surgery before selling them expensive alternatives.

If it works then I'm thrilled, but you shouldn't have to base your pitch on a collection of outdated information, erroneous statistics, biased research and sheer scare tactics to convince people of its relative success.

I'm not sure that causing huge amounts of emotional distress to people facing such a huge upheaval in their lives really reconciles with "first do no harm" but maybe that's just me being picky about the details.

Dr. Stitzel
10th July 2009, 12:05 AM
To be honest, that source is pretty positive regarding surgery isn't it? :)

"Standardized gradations of pain and function showed improvement over-all" and
"impairment due to the scoliosis was lessened, and the ability to perform the common activities of daily living was improved".

I wouldn't expect there to be any significant reduction in lung function with curves of 66 degrees. We usually find noticeable lung probs start at about 90 degrees; usually people have surgery to halt their curves so they never progress and reach that sort of size.

HOWEVER! I do agree it would be fab to find an alternative to fusion surgery. The currently available nonsurgical alternatives all seem to require huge expense, lifelong commitment to daily exercise (even when elderly/infirm/pregnant), and have no independent clinical studies to support their efficacy. Many have been devised by people who are not medically qualified doctors. If these problems could be overcome, I'm sure a lot more people would want to try them.

In addition, there have been cases where fraudsters have jumped onto the alternative bandwagon, giving those with honest intentions a bad name. It isn't really surprising that the scoliosis community in general is so hard on those who practice alternative treatments - everyone is scared of being ripped off or given false hope!

For teenagers with moderate curves, Vertebral Stapling looks promising - but again that's a surgical technique.

I was focusing more on the last sentence of the study ;)

BeckyH
10th July 2009, 01:30 AM
i really hate it when people quote outdated sources of information, it's poor (not to mention as lazy as i am). i'm still at university and we get strongly criticised for using anything published longer than ten years ago (and this in a field which is fast-developing and sometimes there isn't much recent literature available!).

throughout my treatment, i have been led to believe - and seen no reason to disbelieve - that 40 is the magic number for surgery because this is the figure where post-skeletal maturity curves progress at roughly 1 or 2 degrees per year (meaning that a skeletally-mature 16 year old with a 40 degree curve could have a 60 degree curve by the age of 26 and therefore significantly reduced lung function plus increased pain affecting their lifestyle). it's also widely-recognised that surgery on lower curves assists better results as well as an easier recovery for the patient because the trauma and anatomical adjustment are reduced.

maybe i'm a fool for blindly believing this, but i'd also say that experience teaches us something. the reason that we all see specialist scoliosis consultants is because they know what they're talking about (unlike many GPs, physios and other professionals we come across). they know from experience that curve + time = progression.

i've also always believed that any curve of 11 degrees or more is considered scoliosis, whereas 10 degrees and lower would be termed as regular assymetry (after all, nobody is perfect).

i think the approach to medicine these days (this is certainly what i've seen from my surgeon) is that it's done on a case by case basis. for example, if you saw a 17 year old girl who presented with a 25 degree curve, you probably wouldn't brace her, because she'd probably have finished growing and her curve would be at low risk of progressing. however, when you have a five year old who presents with a 25 degree curve (or even a ten year old) it's a lot more worrying.

i guess what i'm trying to say is that generalisations where numbers are concerned can be of little use: it's important to look at the big picture when making such a serious decision about a patient's future, whether that is to brace or not to brace, or to operate or not to operate.

GloomCookie
10th July 2009, 10:49 AM
They can't be that arbitrary if they've been working for 30+ years, and I agree with everything Becky has said. I'm not outraged, but I'm mildly annoyed that the forum is filling up with pointless drivel when there are so many new members to see it.

Cheski
10th July 2009, 01:43 PM
on the private front I asked if I could have an MRI scan and the GP said what for!
OMG!! so time to excercise your right to get a second opinion!!
I believe though (certainly in my area) that a GP isn't able to authorize mri and it has to be done by a specialised doctor... could you get ur GP to refer you to your local hospital? maybe your local Specialist will be as friendly as mine...(I'm just off to chat to mine on wednesday... had mri in stanmore but its so far to go I'm heading closer to home for the results)

Hope you get it sorted x

Ellie
10th July 2009, 02:18 PM
Firstly considering changing my GP looking into that!

I think because I have managed this very well for the last 20 years they have become complacent.

I would like to see the consultant I originally asked for but wondered if that would be a problem as the guy I saw was on his team! (so to speak). I am considering going to him privately! Then seeing if he will transfer me to his NHS list.

Cheski
10th July 2009, 02:28 PM
I dont see that as being a problem, I see like to see different GP's depending on the question I have to ask, and of course if im not sure I have learned what I need I dont hesitate to ask the next GP next time I'm in for something :)
I'd also be carefull re: private then NHS... find out if that will work first, you could always drop him an email and discuss it first...

Dr. Stitzel
10th July 2009, 03:07 PM
What about an active rehab early stage intervention approach? What do you think?

There have been many discussions on this site re core strengthening exercise. Pilates, Yoga, doing the 'side plank' to strenghten obliques etc. All valuable if done correctly with the assistance of a good physio. (therein lies the first problem).

Access to services. (or at least in the UK).
The length of time it takes to be seen by anyone once you have convinced the GP that it is necessary.
(remember that the cost of private medicine in the UK is prohibitive to many) plus to get some private investigations done requires a GP to sanction it.

This site provides a brilliant service in the sticky providing names of consultants who understand Scoliosis and where they practice.

I hear what you are saying when you mentioned that a lot of the exercise type treatments are fine whilst under close supervision of the medics, but once people go home they start to relax the programme. You have to remember that we are human and that with the best will in the world we all need support. Take a look at alcoholics, drug addicts, dieters. They all have the same problem. Great whilst supervised and in a special place, but once home the pressures of daily life come into play.

We should be looking at the support networks around people. Back in the good old days I used to see the consultant who advised physio and I went to physio within a day or two! The last time this happened there was a three month waiting list! Despite the consultant saying it was 'urgent'. I don't know how long you have to wait now?

How do you envisage an early intervention system working with the NHS! (not just for children, but for adults too)?

Hi Ellie,
I realize there are some additional political hurdles to over-come in the UK......It appears the USA may be heading down that road sometime in the near future as well.

My theory listed in the original post is really just a marriage of the sensory integration theory and the biomechanical "vicious cycle" theory purposed by Matha Hawes.....the problem seems to center around the brain's inability to coordinate the lower torso and upper torso movements in relation to the neurological response to gravity.....It isn't entirely clear which spinal cord tracts may be involved (I can list some suspects if you want to go into that level of detail), but it appears the sensory input from the lower torso is the "faulty wire" in this process, because the motor output to the upper torso appears to be fine. It is kind of an incorrect input creates incorrect output type concept. The end result is a major dis-coordination of the biomechanical locomotion concept call the "Red queen concept" (named after Alice in wonderland and the red queen trying to run in opposite directions through the forest).
I know I'm getting into some pretty heavy biomechanics here, but their is a ton of biomechanical modeling that supports this concept beautifully.
The purpose/focus of an early stage intervention program would be to re-coordinate the lower and upper torso via the brain through training of the INVOLUNARY postural reflex centers in the cerebellum.

Dr. Stitzel
10th July 2009, 03:33 PM
Huh...... I guess I'm a little amazed that you feel indifference towards a system of recommendations that were determined back in 1977 and not re-visited since. The "out dated" reference is their own out-dated reference that they are still using! Especially, since the numbers were derived based on a cost analysis system instead of any type of scientific data. These numbers have absolutely no scientific significance what-so-ever......and that doesn't bother you? I mean, doctors are prescribing psychologically damaging/ ineffective spinal bracing or highly invasive surgery off imaginary benchmarks.

Stop taking the guided tour and get your head out of the sand......not all who wander are lost and the path less travelled often makes all the difference.

I guess denial isn't just a river in Africa. I'm sorry you have to go through the 5 stages of grief before you can see what is going on around you. Anger should be next, but the good news is that it ends in acceptance.

I recommend you stop reading my posts if you wish to stop this normal process of enlightenment.

I await your angry, hate filled post, which I assure you I won't read. I hope it makes you feel better though. Happy to be your sounding wall, so you can get it off your chest.....it's not healthy to keep all that rage bottled up inside.......now that is support.:D

I honestly do wish you all the best and peace in the decisions you have made. I only hope you can allow others to find peace in the decisions they must make as well. That is my only goal here.

Have a great day.

Dr. Stitzel
10th July 2009, 03:49 PM
For those of you whom aren't familiar with SOSORT.....it stands for Society On Spinal Orthopedic Rehabilitative Treatment and basically is a international body of scoliosis experts whom engage in all levels of treatment except for surgery......which they recognize as an relatively unwarranted and unnecessary procedure for AIS (don't shoot the messenger!)
Anyway, this org is made up of lots of the big wigs in the business.....Theodoros Grivas, Has Weiss, Manual Rigo, Toru Maruyama, Joe O'Brien(National Scoliosis Foundation)......you get the picture.....So they published a peer reviewed research paper on the 21 most important factors to consider when determining treatment outcomes for scoliosis patients....they are listed from most important to least important......note: Cobb's angle is list 12th out of 21 items....interesting.
Again, this is not my list.....it is SOSORT's list and they are the recognized experts in the field (they also have no financial stake either which inherently makes them more creditable then SRS (scoliosis research society.....which is made up almost entirely of surgeons). So don't shoot the messenger.

I hope some of you find this interesting.

Ranking Importance of factors in scoliosis according to SOSORT
1. Aesthetics
2. Quality of life
3. Psychological well-being
4. Disability
5. Back Pain
6. Rib hump
7. Breathing function
8. Progression in adulthood
9. Needs of further treatments in adulthood
10 Knowledge and understanding of scoliosis in general and their specific pattern
11 Balance
12 Scoliosis Cobb degrees (radiographic lateral flexion)
13 Self control of posture
14 Movement of the vertebral column (sagittal plane)
15 Perdriolle degrees (radiographic rotation)
16 Kypho-lordosis Cobb degrees (radiographic lateral alignment)
17 Sensory motor integration of the corrective ideal pattern
18 Exercise efficiency
19 Equality of weight bearing
20 Improved body motor awareness and motor learning skills
21 Improved processing of vestibular input

GloomCookie
10th July 2009, 03:53 PM
Um, rage? I'm not "angry and hate filled" in the slightest, it was a quote from your post telling me I that I should be, that's all!

I have to say, although I try my hardest to remain as open minded as possible, your bizarre combination of patronising condescension, pseudo scientific waffle and mixed metaphorical prose is as confusing as it is unhelpful to anyone trying to work out what it is you've joined this forum for.

If you're here to help people that's great, but I think we'd all be grateful if you could do it without being quite so unpleasant about the treatments a lot of us have gone through.

I didn't ask for AIS, and you're being downright offensive about the way in which I chose to deal with my condition, something I don't appreciate from someone whose sole aim seems to be to upset as many people as he can in as short a time as possible.

I'm not in denial about anything, I didn't want to have surgery anymore than I wanted AIS but I think that as an informed adult I have every right to make my own choices, which is why I am, and again I am merely quoting for effect here, "outraged" by your use of outdated and incorrect information on surgery.

If your goal is to allow people to find peace in their decisions, perhaps you should reconsider the wording of your website?

GloomCookie
10th July 2009, 03:57 PM
Ha, I wonder how people who actually have to live with scoliosis think of that. It certainly made me laugh.

Dr. Stitzel
10th July 2009, 04:08 PM
This study is from 2002...... I hope that is current enough for some of you "nay sayers".....Please don't shoot the messenger.....I am only trying to bring balance to the conversation and reporting the facts according to the peer reviewed research. I didn't do the research and have no conflicts of interest in regards to the research.....it simply is what it is......

I am not attempting to critize anyone's personal health care choices (past or present), but I wish to have a fair and balanced approach to the subject.

I guarantee you won't find this in your orthopedic's waiting room. Please use it to make an informed decision.

Better yet, I challenge everyone to ask their orthopedic doctor if the surgery for AIS is medically necessary or for cosmetic purposes only.... ask for the research if the answer is the medical necessity answer, because none of the rest of us can find it.....I already know the answer (I've asked a bunch or ortho's already), but most of you will need to hear it directly from the ortho's mouth. Should be interesting.

40% of operated treated patients with idiopathic scoliosis were legally defined as severely handicapped persons.
Long-term results of quality of life in patients with idiopathic scoliosis after Harrington instrumentation and their relevance for expert evidence
Gotze C, Slomka A, Gotze HG, Potzl W, Liljenqvist U, Steinbeck J.
Z Orthop Ihre Grenzgeb 2002 Sep-Oct;140(5):492-8
:eek2:

GloomCookie
10th July 2009, 04:16 PM
Do you honestly, in all seriousness, believe that surgery is performed purely and solely for cosmetic reasons alone?

And probably just a minor detail, but harrington rods haven't been used for years and years so that kind of research isn't really relevant to people considering surgery today :)

Simon
10th July 2009, 04:33 PM
40% of operated treated patients with idiopathic scoliosis were legally defined as severely handicapped persons.
Long-term results of quality of life in patients with idiopathic scoliosis after Harrington instrumentation and their relevance for expert evidence
Gotze C, Slomka A, Gotze HG, Potzl W, Liljenqvist U, Steinbeck J.
Z Orthop Ihre Grenzgeb 2002 Sep-Oct;140(5):492-8
:eek2:[/QUOTE]

JESUS I DONT THINK U COULD CALL PEOPLE SEVERLY HANDICAPPED PERSON
WHAT A SILLY AND OUTDATED PIECE OR WRITING THIS IS..

Dr. Stitzel
10th July 2009, 04:55 PM
Paradigm shifts are all about mindset's......change the mind set and you can change the entire culture of a community. I believe scoliosis patients should be empowered, inspired, and motivated through hope, not fear.

It is far better to light one candle than curse the darkness. Never give up hope, never stop fighting, never stop looking for a better way. Scoliosis is a very complex condition and it is too big of a task for any one person to take on alone, but together we can do it. Many hands make light work.

We live in a free market system.......which means we hold the power..... demand early stage intervention programs, demand better treatment options than bracing and surgery, support research the is attempting to re-define our understanding and treatment of this condition. The medical community will follow the money and the demands of the consumer.....the power really is in the hands of the people....the question is.....When will we decide to use it?

Persistence is a most valuable asset.
Men who have and use this quality always get somewhere.
Nothing else in the world can take the place of persistence.
Talent will not; nothing is more common than unsuccessful men with talent.
Genius will not; unrewarded genius is almost a proverb.
Education will not; the world is full of educated idiots.
Persistence and determination alone are omnipotent.
Calvin Coolidge

Dr. Stitzel
10th July 2009, 05:18 PM
I think most of the viewers in this forum can see the visceral over-reaction many of my posts are recieving. Keep in mind, that almost all of these posts are simply the delivery for other researcher's peer reviewed studies. I'm simply the messenger....so why am I getting such an aggressive reaction to these new ideas.....I think some of these quotes below may help explain it. Enjoy.

“First a new theory is attacked as absurd; then it is admitted to be true, but obvious and insignificant; finally it is seen to be so important that its adversaries claim that they themselves discovered it.”
William James

“The illiterate of the 21st century will not be those who cannot read and write, but those who cannot learn, unlearn and re-learn.”
Alvin Tofler

The greatest obstacle to progress is the “Illusion of Knowledge!”
Dennis Woggon, 2005

GloomCookie
10th July 2009, 05:20 PM
Your enthusiasm is inspiring but there are an awful lot of threads of yours on the front page now! Perhaps it would be better to combine some of your next thoughts as new members might get a bit overwhelmed :)

bluestone
10th July 2009, 05:22 PM
Dr Stitzel I really dont understand what it is you are trying to achieve by putting your many posts on this forum.
I come on here to get support from people who know what its like to LIVE with scoliosis.
You seem to be on here to wind people up with your obnoxious manner.
You are coming across as some sort of preacher.

GloomCookie
10th July 2009, 05:22 PM
I don't think anyone is being aggressive towards you, it's more a frustrated response to the fact that you're using such out of date information to disparage surgical intervention.
Perhaps if you could answer my question about whether you believe surgery is purely for cosmetic reasons, and also perhaps give me some idea why you are using research on harrington rods, we could move on to discussing something else? :)

GloomCookie
10th July 2009, 05:30 PM
40% of operated treated patients with idiopathic scoliosis were legally defined as severely handicapped persons.
Long-term results of quality of life in patients with idiopathic scoliosis after Harrington instrumentation and their relevance for expert evidence
Gotze C, Slomka A, Gotze HG, Potzl W, Liljenqvist U, Steinbeck J.
Z Orthop Ihre Grenzgeb 2002 Sep-Oct;140(5):492-8
:eek2:

JESUS I DONT THINK U COULD CALL PEOPLE SEVERLY HANDICAPPED PERSON
WHAT A SILLY AND OUTDATED PIECE OR WRITING THIS IS..

It does state "legally defined" there, which is in itself interesting because that's quite significantly different to people who either consider themselves disabled or who are actually physically impaired to any extent. I'm classified as a disabled student because of my fusion, but I find the definition rather bizarre given that I spend five days a week doing classes at the gym, have been on an archaeological dig for the past fortnight and am trekking to Machu Picchu for charity next year :D

And for the sake of balance, here's (http://www.ncbi.nlm.nih.gov/pubmed/11389396?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=3&log$=relatedarticles&logdbfrom=pubmed) an article with the following conclusion -

Long-term follow-up evaluation of Harrington rod fusion for adolescent idiopathic scoliosis showed no important impairment of health-related quality of life, as measured by patient-oriented evaluation.

Dr. Stitzel
10th July 2009, 05:31 PM
Ok, here is an orginal one from me.....this is a letter to the editor of the L.A. Times in responce to an article they ran on a less invasive scoliosis surgery. I'm sure many of you will disagree with it on face value, but I can assure you the biomechanical aurgument I made is sound. It was published, so I must have done something right. I particularly like the section on how the spine is really an engine that produces torque for locomotion.

I'm sure this will drive some of you whom are emotionally invested in the topic nuts. Please refrain from reading anymore of my posts if it is going to cause you emotional harm. Thanks.

Please feel free to comment on the article, as I won't be reading them anyway. Serious questions can always be private messaged to me at anytime.

Please note: This pertains to AIS cases only.

Trading deformity for dysfunction
I found the current article in the L.A. Times entitled “Scoliosis Surgery That Is Less Invasive” to be quite informative, but subtly disillusioning. The author painted a gruesome and all-to-accurate picture of the highly invasive surgical fusion surgery some scoliosis patients elect to undergo for purely cosmetic reasons. Multiple short-term and long-term studies have found that scoliosis fusion surgery does not prevent long-term chronic pain or improve lung function. To the contrary, one such 2002 study conducted in Germany found 40% of surgically treated we’re legally defined as severely handicapped within 16.7 years following the surgery. Such a startling statistic obviously begs the question of how can there even be medical rationale for a procedure that provides such a terribly high failure rate. The answer is simple; there isn’t. A widely read and highly regarded scoliosis researcher and physician, Dr. Has-Rudolf Weiss, concluded in his 2008 article in Disability and Rehabilitation that "No evidence has been found in terms of prospective controlled studies to support surgical intervention from the medical point of view...... Until such evidence exists, there can be no medical indication for surgery. The indications for surgery are limited for cosmetic reasons in severe cases and only if the parent and family agree with this."
While less invasiveness in any surgical procedure is generally a welcome development (and this is no exception) the subtly disillusioning part is that the inherent invasiveness of the procedure is secondary to the procedure itself. The spine is made up of 24 moveable bones called vertebrae. Each vertebrae has individual motion, but doesn’t move individually (no one can wiggle a single vertebra right?). So the vertebrae work together in groups in a lever arm fashion. These groups work together by twisting and bending to create the torque which drives the pelvic and shoulder girdles; thus providing the power for locomotion. Metaphorically, envision the spine as a 24 cylinder engine that creates the spinal core power to move you forward. The surgical spinal fusion performed on scoliosis patients, again for cosmetic reasons only, will often include the fusion of 18 out of the 24 vertebrae. Essentially, it is the same as fusing 18 out of the 24 cylinders in your engine and expecting it to run better.
Scoliosis patients whom choose multi level spinal fusion surgery are essentially trading deformity for dysfunction and long-term chronic pain. The non-fused areas of the spine begin degenerating at an alarming rate and long-term studies indicate the vast majority of these patients will experience some form of hardware failure in their lifetime.
Research and efforts to create early stage scoliosis intervention programs are desperately needed and long overdue. Creating a less invasive surgery is a step in the right direction, but avoiding the surgery entirely is by far and away the patient’s best treatment option.

GloomCookie
10th July 2009, 05:34 PM
Can I just ask what the point of your posting is if you're not going to read the questions we ask?
I'm quite saddened that you're just ignoring the questions I've already posed, and it does rather lead me to suspect that you can't actually answer them at all. I am genuinely interested in why you believe what you believe but if you won't "speak" to me then I can't learn anything from you, which is unfortunate.

Dr. Stitzel
10th July 2009, 05:37 PM
Ok, last one for today......I promise.

Using a cobb angle to describe or quantify scoliosis is like attempting to describe your new car by only it's color. It is one very small piece of a very complex puzzel. Yet, it seems to the sole determining factor treatment recommendations and outcomes. Here is a post I recently made on the topic at www.fixscoliosis.com (http://www.fixscoliosis.com)

Just some food for thought.

I hope everyone has a GREAT weekend and a sincere THANK YOU to all of you who continue to send me private messages of support. I'll keep hanging in there ;)

More than a Cobb's angle.....

The list of top 21 items of most importance when considering scoliosis treatment outcomes by SOSORT highlights a very commonly lost concept.

Scoliosis patients are people. They aren't floating spines that come wandering into doctor's offices. Where is an honest to goodness real live person attached to that spine.

The orthopedic community has become so solely focused on cobbs angle as the only unit of measure for scoliosis that it is completely understating the majority of the disease and the most important aspect of the disease......the patient.

Cobb's angle is simply put nothing more than measurement of the gross lateral flexion of the curvature. Nothing more, nothing less. I doesn't provide any knowledge in terms of rotation, level arm biomechanics, pain, quality of life, organic health measures such as pulmonary or cardiovascular health; nothing.

It is a quick and dirty method of describing when a different treatment method should be applied (observation, bracing, surgery)

It understates the complexity of the disease and undermines the importance of the patient. Perhaps this is why SOSORT felt it appropriate to list aesthetics, quality of life, psychological well-being, disability, back pain, rib hump, breathing function, curve progression in adulthood, needs for further treatment in adulthood, knowledge/understanding of scoliosis in general and their specific growth pattern, and balance ahead of Cobb's angle in importance of scoliosis treatment goals.

Just one man's opinion (Supported by some of the foremost scoliosis experts in the world).

GloomCookie
10th July 2009, 05:43 PM
Ohhhhhhhhh, you're a chiropractor! I get it now!!

You have a great weekend too :D thanks for joining, hopefully when you come back we can talk about some of the questions I've asked :)

Mustang Sal
10th July 2009, 05:52 PM
I agree with GC - your posts are coming across as patronising. You don't know any of us on here, and therefore can't very well say that we have our 'heads in the sand'. Please, give us some credit! I don't think any of us on here have gone down the surgical route lightly, and believe it or not, many of us have done our own research rather than just blindly following what the surgeons say.

Oh, and the '5 stages of grief'? I have no idea what you're talking about!

LauraBM*
10th July 2009, 11:05 PM
i agree, when any of these so called "experts" actually have experience of having scoliosis, then we might listen. however, they don't understand what it's like. :)

Mustang Sal
10th July 2009, 11:13 PM
which they recognize as an relatively unwarranted and unnecessary procedure for AIS (don't shoot the messenger!)

Well stop saying it then! You seem to be hiding behind this 'messenger' persona when it's clear that these are your beliefs too - fair enough, you can believe what you like, but please don't keep making out you're merely passing on information.

angie123
11th July 2009, 12:42 AM
I'm not sure I understand this recent deluge of information preaching non-surgical techniques to a bunch of people who have already (for the most part) had surgery. Perhaps the non-surgical room would be a better place to put this type of information, because it comes off rather inflammatory to those who have already had surgery, as it implies that they made the wrong decision. While I myself try to remain open to alternative methods of treating anything, I don't appreciate anyone saying that there is a wrong or a right way. And if I hear more time that scoliosis is a cosmetic issue...:demon:

Beanstalk
11th July 2009, 12:08 PM
Hi there

I joined this forum quite recently. I am interested in discussing all the forms of treatment for AIS, however the impression I get is that there is a bias towards surgery in discussions regarding treatment.

In terms of sensitivity there is a response at the beginning of this thread that is extremely rude, with no apparent response from moderators, unless I have missed this. Other responses seem surprisingly defensive. Diverse opinions exist in all areas of life, why should this be different? My reading of the originators responses is that they have been courteous. I don't know if he is a charlatan or not, which seems to be the implication of some responses, he appears to be relatively open and to be attempting discussion, not dictating a single approach.

Sensitivity to others is important, expressing an opinion that differs is not necessarily an attack. I have been subject to a quite rude response that I feel was inappropriate, and I think it undermines the good work of this support group - as does the tone of some of the comments within this thread.

Let's discuss in an open manner, please.




My two pennyworth,

Most of the people on here welcome information from the medical community, but as this is a 'support' group it needs to be done in a sensitive manner. Unfortunately, whether it is your manner of writing or a personal thing you are coming across as aggressive.
This could be a problem if you are trying to help people!

Anyone with a problem will respond emotionally to the type of comments you have been making.

As said before most of the people on this site either have scoliosis or have children with it. This makes us a specialist group. Some of us have lived many years with challenges and are prepared to share the good and the bad with others, all help is offered with the proviso of this helped me or hindered me, take a look at the information and make the best choice for yourself, your life and expectations. No pressure.

I personally did not go the surgery route and so cannot comment on this method. I have managed my quality of life for the last 30 years, but recently have started to experience breathing problems, which may mean I will decide to have surgery.

From my reading of other peoples experiences, everyone here at least, does their utmost to gather as much information prior to ANY treatment they undertake. No-one undertakes surgery lightly. They listen to their consultants, weigh up the alternatives and make the best decision they can. No one knows what will happen in the future or how each individual will react to treatment, so it is all a lottery.

My own investigations indicate that we are dealing with a complicated beast and that some families appear to be prone to problems with spines, there appears to be some good evidence pointing to an infection triggering the condition with certain people, (maybe with a particular gene). Accidents could have a bearing too!
At the present time we are all as mystified as each other.

I am sure that many of us are happy to assist research into this condition but we would appreciate it being done sensitively, without condemnation for the choices we have or are about to make.

By the way, I work in the medical research community and spend a lot of time with academics, patients and commercial interests, gathering and collating information.

I am sorry that this is garbled, but although at work I can analyse information quite unemotionally, here is the place I come for emotional support :)

Maybe if you approach this differently you could help both sides. :)

mark
11th July 2009, 12:32 PM
Hi Beanstalk

If you let us know which post you are referring to i can have a look at it. This site is run by volunteers and its sometimes difficult to read every post. Like you say everyone has a right to express there point of view and that should in the very least be respected but it works both ways. Everyone has the right to express an opinion unfortunately most people on this site are, have or are about to have surgery so if it seems to be somewhat pro surgical then just how it is. But your quite right if your upset about a paticular post then just let one of us know.

I think what has frustrated a lot of members on the site is they have read the posts made by the Dr but he does not appear to be answering them. Right or wrongly that is some what frustrating. I don't really have an opinion either way but some people have viewed some of the threads as conderscending again i don't have an opinion.

Where a family here and as in all families we don't see eye to eye from time to time, we fall out but we never give up, i have bit from time to time and posted something i have regretted later but he ho thats life sometimes when conversing with friends we all have said something that we have regretted later again thats life no ones perfect, we just apologise and get on with it like i have said some phrases upset and cause a response that maybe in hindsight was a tad over the top but at the end of the day where a community of like minded individuals (emphasise on individual) who all have different views and different ways to express those views.



I hope that ramble makes sense

Mark

P.s i'm getting sick of all the upset caused in all the different threads so i have merged them all into one thread. Not done for any other reason than the boards getting top heavy with posts from the Dr

Beanstalk
11th July 2009, 12:39 PM
9th July 2009, 03:36 PM not a xxx disease

in fact, regarding semantics, it is a disease, on two levels

1. dis-ease = lack of comfort

2. definition of disease: http://www.biology-online.org/dictionary/Disease

An abnormal condition of an organism which interrupts the normal bodily functions that often leads to feeling of pain and weakness, and usually associated with symptoms and signs.

A pathologic condition in which the normal functioning of an organism or body is impaired or disrupted resulting in extreme pain, dysfunction, distress, or death.

Courtesy is desirable, don't you think?

mark
11th July 2009, 12:41 PM
What organism are you referring to

offending word has been removed

By the way i don't feel diseased and like Simon did i would take offence at being reffered to as being diseased as i would suggest you may if someone referred to your daughter as being diseased

lyssie
11th July 2009, 01:04 PM
Beanstalk... correct me if I'm wrong but this Dr S, is saying that surgery for AIS is mostly for cosmetic reasons... but it's not and that's the point we're trying to put across, not that we're bias toward surgery being the only successfull option or anything like that. The people on this forum are experienced and aren't nearly as narrowminded as you seem to think. That brings me to another point... Dr S... do you have scoliosis? If not then I think you seem to be the narrowminded one on here!

And I too am not diseased!

Mustang Sal
11th July 2009, 01:18 PM
Hi Beanstalk,

I can't speak for anyone else, but my problem with the the post at the beginning of this thread is firstly that the poster appears to have a commercial interest in treating scoliosis. Ok, not a crime in itself, but there are a lot of people out there who have been mislead and ripped-off, usually with all manner of scare tactics, by people who claim to be able to cure scoliosis (I think there has been some high profile case in the US recently where some guy who has been ripping people off for years was jailed), so people are natually cautious about these sorts of claims. The posts read like sales literature, which to me is rather worrying.

Another problem I have is that the majority of people on here have either had surgery already or are about have it, so to be told "the long-term consequences of surgery are probably worse than the disease itself" is not exactly good!

To be honest, I don't think anyone's been discourteous as such - defensive perhaps, but for the reasons I stated above, that's hardly surprising.

I really don't want you think that because there's a bias towards surgery (and you're right, there is, but that's simply because the vast majority of members have gone down this route) that we're closed off to reading about any other treatments - it's all in the way the information is conveyed, and I personally think Dr S came across as preachy and condescending. Perhaps i'm a bit sensitive...

lyssie
11th July 2009, 01:24 PM
Just wanted to say Sally I agree with you... especially with the people who've had or are about to have surgery to correct their scoliosis. Being told something like this (which may or may not be one of the biggest desicions of someones life) even so... being as good as told that they've made or are making the wrong desicion... it's not at all called for in my opinion!

You're not at all being sensitive Sally I agree with you about the attitude that Dr S came across with!

Beanstalk
11th July 2009, 01:31 PM
An organism is a living thing, I am referring to the definition of disease. Organism refers to a person in this discussion.

My daughter is diseased within the terms of the definition. I am as comfortable with that as any parent whose child has a debilitating condition. I suppose in that way I too am dis=eased

My understanding is that it is possible to live with some manifestation of scoliosis without resorting to surgery, providing there is focused physical maintenance to prevent deterioration. It isn't cosmetic surgery in the everyday understanding, ie for vanity, that's being referred to. It is in order to improve the appearance. Another aim is to prevent further deterioration, which might be possible through physical therapy.

I am not vaunting the methods of this bloke, btw.

Are there not downsides to surgery?

lyssie
11th July 2009, 01:38 PM
Scoliosis being promoted as a disease wouldn't really go down well with people who didn't originally know what scoliosis was those people being withouth Scoliosis... aka the general public. The word disease is generally understood as something that's, disease ridden and catching, not a good thing (well scoliosis I know isn't a good thing but you know what I mean).
If that at all maksed sense. And I like to inform people of what scoliosis is and what I had the surgery for... I don't like to say yes I had a disease. People's general reaction to the word disease isn't really positive wouldn't you say?

tonibunny
11th July 2009, 01:39 PM
I think discussions of non-surgical methods would be better off in the non-surgical forum, as naturally the general forum is full of people who are following the "standard" medical method of treatment, which ends up in surgery.

From now on I'll be moving any such threads to the non-surgical forum, and hopefully we can have a discussion without scaring those who are about to have surgery or who have already had it, and people who are interested in nonsurgical methods will naturally go there :)

Regarding surgery, I have always been told that the foremost reason is to prevent progression as one ages, which would eventually have a detrimental effect on the internal organs. Any cosmetic improvement is secondary to that.

Dr. Stitzel
11th July 2009, 01:43 PM
Ok, I'm going out on a limb here......which is saying something, because I feel my prior posts are firmly on solid ground. I really think some of you would benefit from some tough love. I mean OMG, your censoring the word disease, because it hurts some people's feelings! Give me a break.

This is a support group, which in theory is wonderful thing. However, I think everyone here should be very concerned with the general feeling of hopelessness and defeat within the thought patterns of it's members. I really think a lot of forum members are suffering from prolong post traumatic stress syndrome......I'm being serious.....this isn't healthy and isn't helping anyone. A lot of you should be seeing treatment for PTSS.....I am genuinely concerned.

It appears that the only thing this forum is supporting is a victim mentality.

I'm sorry that the brutal facts of reality are coming home to roost, and I'm sorry I have to be the one to deliver them, but them is the facts folks. Sometimes we have to live with the decisions we have made in life, but that doesn't mean we can't move on and help others make well informed decisions. WE ARE HERE TO SUPPORT EACH OTHER, WHICH MEANS WE PUT OTHER PEOPLE'S AGENDA AHEAD OF OUR OWN.

I am not and have not attempted to sell anything to anyone at anytime on this forum. I simply have access to information and an alternative view point to scoliosis treatment and I am willing to share it with your forum members, so they can have the peace of mind when choosing a treatment option. THAT IS THE BEST SUPPORT ANYONE CAN GIVE THEM. Everyone needs to put their personal agenda's and hard feelings on the shelf and start working in the best interests of others.

I think many of you may find the following information quite helpful in explaining some of what you are feeling. I hope it aids in your emotional recovery.....particularly the post op AIS patients who, under the impression their procedure was medically necessary, and not only cosmetic, were either lied to or seriously mislead. I would be upset too.

BTW, Mustang Sal......your entering into stage 3 (usually doesn't last too long with most of my patients), but watch out for stage 4.....I can be prolonged and dangerous if you aren't aware of it. The best solution is for you to become an advocate for a scoliosis patient's right to make an informed decision......make sure ALL the facts are known before any treatment decision is made......then let the cards fall where they may.

The 5 stages of grief.

Denial (http://en.wikipedia.org/wiki/Denial):
· Denial is usually only a temporary defense for the individual. This feeling is generally replaced with heightened awareness of situations and individuals that will be left behind after death. [1] (http://en.wikipedia.org/wiki/K%C3%BCbler-Ross_model#cite_note-Santrock-0)
Example - "I feel fine."; "This can't be happening, not to me."
2) Anger (http://en.wikipedia.org/wiki/Anger):
· Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy. Any individual that symbolizes life or energy is subject to projected resentment and jealousy. [1] (http://en.wikipedia.org/wiki/K%C3%BCbler-Ross_model#cite_note-Santrock-0)
Example - "Why me? It's not fair!"; "How can this happen to me?"; "Who is to blame?"
3) Bargaining (http://en.wikipedia.org/wiki/Bargaining):
· The third stage involves the hope that the individual can somehow postpone or delay death. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Psychologically, the person is saying, "I understand I will die, but if I could just have more time..." [1] (http://en.wikipedia.org/wiki/K%C3%BCbler-Ross_model#cite_note-Santrock-0)
Example - "Just let me live to see my children graduate."; "I'll do anything for a few more years."; "I will give my life savings if..."
4) Depression (http://en.wikipedia.org/wiki/Depression_(mood)):
· During the fourth stage, the dying person begins to understand the certainty of death. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and grieving. This process allows the dying person to disconnect themself from things of love and affection. It is not recommended to attempt to cheer an individual up that is in this stage. It is an important time for grieving that must be processed. [1] (http://en.wikipedia.org/wiki/K%C3%BCbler-Ross_model#cite_note-Santrock-0)
Example - "I'm so sad, why bother with anything?"; "I'm going to die . . . What's the point?"; "I miss my loved one, why go on?"
5) Acceptance (http://en.wikipedia.org/wiki/Acceptance):
· This final stage comes with peace and understanding of the death that is approaching. Generally, the person in the fifth stage will want to be left alone. Additionally, feelings and physical pain may be non-existent. This stage has also been described as the end of the dying struggle. [1] (http://en.wikipedia.org/wiki/K%C3%BCbler-Ross_model#cite_note-Santrock-0)
Example - "It's going to be okay."; "I can't fight it, I may as well prepare for it."

Dr. Stitzel
11th July 2009, 02:04 PM
From now on I'll be moving any such threads to the non-surgical forum, and hopefully we can have a discussion without scaring those who are about to have surgery or who have already had it, and people who are interested in nonsurgical methods will naturally go there :)

Regarding surgery, I have always been told that the foremost reason is to prevent progression as one ages, which would eventually have a detrimental effect on the internal organs. Any cosmetic improvement is secondary to that.
__________________
Huh, I thought this was the GENERAL DISCUSSION area.....and the people who are about to have surgery should be scared (there is a high rate of complications)....and I'm sorry, but every single peer reviewed published research article on the effects of scoliosis surgery agrees there are NO organic health benefits gained. The surgical procedure is limited to cosmetic purposes only (in cases of AIS).

No one likes being lied to, but I'm not the one lying and the research proves it. I am begging each and every one of you whom are considering surgery to have this conversation with your orthopedic doctor first! What can it possibly hurt? Don't trade deformity for dysfunction.....it isn't worth it.

tonibunny
11th July 2009, 02:14 PM
There is no evidence of widespread post-traumatic stress syndrome here, nor feelings of hopelessness and defeat. Neither does this forum support a victim mentality. We support people whatever their choice of treatment, and although you don't agree with surgery, many people are happy that they have had it. We do have a room in which you may discuss non-surgical treatments.

This forum is for people who have scoliosis, or their carers. We are a happy, positive community. Naturally people will be sceptical if someone without scoliosis posts, and will question their motives.

Those who have had surgery have discussed the risks of that surgery with their doctors, who are medically qualified specialist surgeons. Most people would rather place trust in these specialists, who have studied for many years to gain medical qualifications and have years of experience in a hospital environment, and who are actively involved in scoliosis research, rather than chiropractors (who are not allowed to call themselves "Doctor" here in the UK!) or other alternative practitioners. Many of us have also researched peer-reviewed literature from orthopaedic journals. No-one undertakes surgery lightly.

I respectfully suggest that you return to your own forum to discuss things, if you aren't happy here. We can always add a link to your forum from our links page so that people can visit if they wish.

lyssie
11th July 2009, 02:19 PM
I'm perfectly functional after my surgery and it's been 3 years since my surgery now! :)

Mustang Sal
11th July 2009, 02:25 PM
BTW, Mustang Sal......your entering into stage 3 (usually doesn't last too long with most of my patients), but watch out for stage 4.....I can be prolonged and dangerous if you aren't aware of it. The best solution is for you to become an advocate for a scoliosis patient's right to make an informed decision......make sure ALL the facts are known before any treatment decision is made......then let the cards fall where they may.



Damn, and I thought I hid it so well :p

Purlease, what has this got to do with scoliosis? If you don't have scoliosis yourself, you can't possible know how it feels and what emotions people go through. You don't know anything about me, my medical history or indeed my mental state, so i'd appreciate it if you didn't try to patronise me. Thanks.

Mustang Sal
11th July 2009, 02:31 PM
Sorry Toni, didn't see your post before I replied. I think you just about summed things up, so i'm going to leave it at that :)

Dr. Stitzel
11th July 2009, 02:43 PM
Damn, and I thought I hid it so well :p

Purlease, what has this got to do with scoliosis? If you don't have scoliosis yourself, you can't possible know how it feels and what emotions people go through. You don't know anything about me, my medical history or indeed my mental state, so i'd appreciate it if you didn't try to patronise me. Thanks.

I work with scoliosis patients 5 days a week, 50 weeks a year, for 7 years now......I am niave enough to think I have a slightly broader perspective on the subject than most. Besides, I haven't been emotionally scarred by the condition (I didn't use the D-word), so I think I can be a little more objective at this point.

I'm really just trying to help. I see so much pain and so little healing going on in this forum....... It breaks my heart....It honestly does.
I can make a lot more money and work a lot less hard fixing back pain and headaches all day, but I choose to work with scoliosis, because I refuse to look these young kids in the face and tell them "your screwed".

Step one: Coverting scoliosis patients from victims into soldiers.

Step two: Getting the scared to death mother/father out of denial and up to speed with the biomechanics of the situation.

Step three: Reduce the forward head posture, de-rotate the hips, and restore the normal sagittal (front to back) curves to the spine. This will reduce tension on the spinal cord (Alf Breg, 1979) and balance the center mass of the head back over the hips 3 dimensionally. At this point, you can usually halt the curve progression.

Step four: Reduce/un-do the coil down effect occuring between T2 and L3 with a combination of traction/de-rotation rehab.

Of course neuro-muscular re-ed of the INVOLUNTARY reflex arcs is ongoing through out the entire process.

See.....it doesn't sound that hard does it......although, I must admit.....it certainly isn't easy.

No bragging, but I just finished up 2 intensive care cases in my office this week (2 weeks of treatment.....5-6 hours a day!) and BOTH are off the surgery list!

Alyssa 52 degree thoracic cobb reduced to 31
Brooke 40 degree "C" pattern reduced to 23

Would you like me to post pics of the pre and post films?

Both have extensive home rehab to do at his point, but I believe both of them have the "fight" with in them to be successful. Great patients.....great kids.

Dr. Stitzel
11th July 2009, 03:26 PM
This isn't aimed at anyone inparticular, but I think some of you can identify with this study's findings........

Denial isn't just a river in Africa you know.......I'm bringing you peer reviewed research data and conclusions from experts (some of whom DO have scoliosis) and you attempt to defend your position with mis-educated belief system that has some how morphed into some kind of false religion....weird.

I think we can all agree that while actually Harrington rods are rarely used anymore....the over all effects of the surgical procedure are basically the same.....fusion.


Quality of Life and Back Pain: Outcome 16.7 Years After Harrington Instrumentation
Spine 2002 Jul 1;27 (13) :1456-63 Gotze et al, Dept. of O Surg, Hamm, Germany
“The psychological health status is significantly impaired.”

Oh yeah, and here is more proof scoliosis surgery isn't a cure......the curve (unfortunately) just keeps marching on....

We need a better way.

Initial average loss of spinal correction post-surgery is 3.2 degrees in the first year and 6.5 after two years with continued loss of 1.0 degrees per year throughout life.
The Natural History Of Scoliosis, Med J, Malaysia, 2001 June, Chauh et al

mark
11th July 2009, 03:33 PM
"An organism is a living thing, I am referring to the definition of disease. Organism refers to a person in this discussion.

My daughter is diseased within the terms of the definition. I am as comfortable with that as any parent whose child has a debilitating condition. I suppose in that way I too am dis=eased"


Oxford english dictionary

Organism


noun 1 an individual animal, plant, or single-celled life form.


I hope i'm not getting too pedantic

Dr. Stitzel
11th July 2009, 03:35 PM
This isn't aimed at anyone inparticular, but I think some of you can identify with this study's findings........

Denial isn't just a river in Africa you know.......I'm bringing you peer reviewed research data and conclusions from experts (some of whom DO have scoliosis) and you attempt to defend your position with mis-educated belief system that has some how morphed into some kind of false religion....weird.

I think we can all agree that while actually Harrington rods are rarely used anymore....the over all effects of the surgical procedure are basically the same.....fusion.


Quality of Life and Back Pain: Outcome 16.7 Years After Harrington Instrumentation
Spine 2002 Jul 1;27 (13) :1456-63 Gotze et al, Dept. of O Surg, Hamm, Germany
“The psychological health status is significantly impaired.”

Oh yeah, and here is more proof scoliosis surgery isn't a cure......the curve (unfortunately) just keeps marching on....

We need a better way.

Initial average loss of spinal correction post-surgery is 3.2 degrees in the first year and 6.5 after two years with continued loss of 1.0 degrees per year throughout life.
The Natural History Of Scoliosis, Med J, Malaysia, 2001 June, Chauh et al

CLEARly (pun intended) the empirical evidence is starting to mount here.....I have posted well accepted data over and over again. When does it become undeniable? Everyone needs to get their pre-frontal lobes under control and get on the same page here.....what is done, is done. Let's put our collective heads together and work towards the common goal of a better way. (Do you see a theme developing here?) We should be encouraging any and every attempt to develop an non surgical approach to scoliosis treament. Besides, what is lost......a patient can always elect to have the surgical procedure if an alternative method fails.....Not that I would recommend that anyway. It was once said, "if you want to double your success, quadriple your failures". That is the only way we can move forward in this process, but rest assured.....WE ARE MOVING FORWARD.

Where is the outrage? I don't get it. Don't you want the future children of the world with scoliosis to have better treatment options that you did? Or are you viewing someone's else's positives, as your negative.....that would be a very selfish and immature attitude to take....I hope that isn't the case.

titch
11th July 2009, 03:40 PM
Dr Stitzel,

I appreciate that you are a sincere individual and want to help people. Because of this, we have tried to stand back, and allow discussion to occur. However, the fact is that no matter whether you are intending to help people who have not had surgery, you are doing this at the cost of upsetting and antagonising (persistently!) a lot of people who have, for whatever reason had surgery and also those for whom *there is no other choice*.

Many people who are only just joining the discussion or catchin up will not have seen the titles of some of your threads which were subsequently merged. Simply put, it is *unacceptable* to title a thread "Why surgery is a really bad idea", just as it is unacceptable to title a thread "Why seeing a chiropractor is a really bad idea". Whether you sincerely believe that had we been given the chance to avoid surgery that we all could have done is IRRELEVANT. The simple fact is that many of us here have had surgery (and that includes people who have been treated with supposedly extremely successful protocols, including people who have failed to see results even while doing residential care at major centres) and it is NOT your place to deliberately undermine us, and attempt to strike fear into us about our long term prospects.

If you had taken the time to spend time quietly here reading and watching before leaping in, you would see that while there is inevitably a strong surgical bias, that nevertheless as a group we absolutely support anyone who wants to take whatever steps they can to avoid surgery.

There are so many different levels on which I can take issue with your postings that it's just silly, however the fact that you have consistently refused to answer some of the simplest questions posted to you, and have instead seen fit to engage in frankly useless (in respect of your stated agenda of making sure people are informed and thus will avoid surgery) debate with members who have already had surgery in order to belittle them and imply that they are suffering mentally. I think you would actually be very hard pressed to meet a stronger group of people than our members here - *whether* they pursue a surgical route, or a non-surgical one.

Given that while you have remained polite you have nevertheless taken a distinctly antagonistic approach to things, I am going to place you on moderation for the time being. You will still be able to post, but your posts may not appear immediately as we will need to approve them. We may edit them to remove things that we consider antagonistic (seriously, to keep saying "don't shoot the messenger" is just designed to wind people up! If a pro-surgery person was to keep saying that, I would consider that equally antagonistic) or inflammatory. There is no intention to gag you or prevent you sharing information, but every intention to prevent this descending into an argument of the kind that seems to be being fomented currently.

I will stress again, as a site our ethos is to support everyone, no matter what approach they take to things. Personally, I am an absolute believer in trying whatever you can to avoid surgery - it's not perfect! Neither are the alternatives. Something I would very much like to know is whether you and your colleagues will be engaging in a properly designed prospective study, to determine the degree of success that your programme offers? As it is, while I am in no way suggesting that you are not acheiving the results that you state, you are not giving a level playing field. You are using published, peer reviewed studies to support your anti-surgery stance, and made a big deal over the fact that they needed to be prospective to actually be taken seriously, but all you are offering in return on the alternative is anecdote. Anecdote and case studies are very difficult to take seriously, because there are always going to be cases which respond unusually well, but without context that is essentially meaningless. As such, if the kind of success you are talking about is routine, I would very much hope that you are doing everything in your power to ensure that results are fully medically verified, supported by adequately designed and peer reviewed studies, and eventually providing training to sufficient other practicioners that no one should be left with no other recourse but surgery in future. If you are not planning to do these kinds of studies, I'd be very interested to know why.

Anyway, I'll say it once more, just so we're absolutely clear. The site ethos is support - that is support whether you take a surgical approach, a non-surgical approach, or even just decide to ignore it altogether. And I personally do believe that non-surgical approaches are worth trying where it is affordable to do so (lets face it, many people simply CANNOT afford £4000). So I am in no way anti-nonsurgical treatment. I am however absolutely against anyone feeling that they can just disparage a vast majority of the members and deliberately undermine them and seek to instill fear in them simply to further their own agenda. That sort of behaviour makes the virtue of the agenda irrelevant.

So, please do engage in useful debate and discussion, and please do feel free to continue to post links and information, but do so without the antagonistic and inflammatory patronisation which has marked some of your posts so far. We're glad to have you here, but only so long as you remember the word *support* and that that is something which is to be offered without undermining others in order to do so.

Thank you :)

titch

Dr. Stitzel
11th July 2009, 04:03 PM
Hey Titch,
I understand your trying to maintain control over the forum....you doing what a moderator should do, but ask your self this question........Are you supporting or enabling? Sheltering these people from the truth isn't helping them and only allowing them to continue living in the darkness. I can't imagine that is your goal.

Besides, why shouldn't post op patients have full exposure to the dangers, risks, and limited gains of such an invasive procedure? Their Ortho certainly isn't going to tell them. Let them work through the process and they will come out stronger, better educated, and supporters of a non-surgical solution when they come out on the other side. This is how you change the culture of a community....stage 1 is "the brutal realization of the facts"......John Cotter's book explains this process BEAUTIFULLY! Don't derail it now.

I am not pushing my services at all..... I am only restoring hope to a system that has fail them. Besides, I would recommend no treatment vs. Surgery. I'm not alone. See the reseach article listed below.

Treating Scoliosis in Young Unneeded
Journal of the American Medical Association (JAMA), Stuart Weinstein, MD, University
of Iowa, 2003.
“Many with curvature of spine go on to lead normal lives. Many adolescents
diagnosed with spine curvatures can skip braces, surgery or other treatment without
developing debilitating physical impairments, a 50 year study suggests.”

mark
11th July 2009, 04:44 PM
Moved into non surgical forum as this is where discussions on non surgical procedures belong

Dr. Stitzel
11th July 2009, 04:57 PM
Moved into non surgical forum as this is where discussions on non surgical procedures belong

Ok, I'm cool with that......Besides, we were discussing surgery.....just the other side of the debate, no one ever hears.

Let me address the Chiropractic issue. Traditional Chiropractic for the treatment of scoliosis worthless. I do not recommend traditional Chiropractic for the treatment of scoliosis. A patient is better off with no treatment, than treatment with traditional Chiropractic procedures.

I have a study proving this if anyone is interested? :D

titch
11th July 2009, 05:04 PM
Hey Titch,
I understand your trying to maintain control over the forum....you doing what a moderator should do, but ask your self this question........Are you supporting or enabling? Sheltering these people from the truth isn't helping them and only allowing them to continue living in the darkness. I can't imagine that is your goal.

Besides, why shouldn't post op patients have full exposure to the dangers, risks, and limited gains of such an invasive procedure? Their Ortho certainly isn't going to tell them. Let them work through the process and they will come out stronger, better educated, and supporters of a non-surgical solution when they come out on the other side. This is how you change the culture of a community....stage 1 is "the brutal realization of the facts"......John Cotter's book explains this process BEAUTIFULLY! Don't derail it now.

I am not pushing my services at all..... I am only restoring hope to a system that has fail them. Besides, I would recommend no treatment vs. Surgery. I'm not alone. See the reseach article listed below.

Treating Scoliosis in Young Unneeded
Journal of the American Medical Association (JAMA), Stuart Weinstein, MD, University
of Iowa, 2003.
“Many with curvature of spine go on to lead normal lives. Many adolescents
diagnosed with spine curvatures can skip braces, surgery or other treatment without
developing debilitating physical impairments, a 50 year study suggests.”

Once again, I would note that this is quite a patronising and condescending tone to be taking. Most of this forum are grown adults, many of us are professionals in a variety of fields, and are perfectly capable of supporting rather than enabling. I don't feel it is your place to be attempting to assess our mental health via your own skewed perceptions of the replies you get having posted inflammatory comments.

The vast majority of us have a very good idea of what risks we face as we go on, and in fact most of us were informed clearly of those risks as part of the decision making process - if nothing else, an ortho can do no less, because of the risk of litigation if they don't ensure informed consent. The fact that you are able to find a load of links that support your message does not mean it is the only message, as there is plenty of evidence to the contrary. More particularly, the more time one spends as a member of these kinds of fora, the more obvious it becomes through the anecdotal evidence of adults turning up with very advanced curves because they were turned away for surgery as teens, that doing NOTHING is simply not a viable alternative when a curve is of surgical magnitude. You will note that I am not saying that other methods should not be employed, but that in a choice of surgery vs nothing, the anecdotal evidence of older people turning up on the forums is that nothing is not a workable solution for many.

The thing I am taking issue with is not whether information is provided to people, but rather the method by which it is done. It can be done in a dispassionate and informative manner, which allows them to easily weigh up the facts and make their own decision, or it can be done in a more hysterical and emotive manner, as it has been above. The trouble is, the same as there is a placebo effect, there is a nocebo effect. It is entirely possible as a medical professional to cause people to suffer problems that they otherwise would not have done, by the manner in which you deliver information to them. If you persist in posting in a non-useful fashion, and one designed to undermine people for no better reason than your own satisfaction in the result, we will have to take further steps. I really hope that that does not prove necessary.

Amazed Jean
12th July 2009, 05:02 AM
here Here ! Or should I say Hear Hear!

zoolane
12th July 2009, 03:36 PM
Dr Stitzel,
Haven't you heard of bedside manner in other words POLITE, in this forum we are people not patients and if we wants found out any information I am sure that we would know how or ask help it doing so.
So as for you throw ur research at us, some people might interesting in what you said.
If you have not got the 'disease' which it is not then you have no right to said which treatment is better.

Personal I think you here to promotion your Clear Inst and not here in best interting for this forum.

Dr. Stitzel
12th July 2009, 04:28 PM
Dr Stitzel,
Haven't you heard of bedside manner in other words POLITE, in this forum we are people not patients and if we wants found out any information I am sure that we would know how or ask help it doing so.
So as for you throw ur research at us, some people might interesting in what you said.
If you have not got the 'disease' which it is not then you have no right to said which treatment is better.

Personal I think you here to promotion your Clear Inst and not here in best interting for this forum.


The information I have provided is actually pretty tough to track down in some cases (the ortho community doesn't openly promote negative research about their procedures) and the average lay person on the street would have almost no chance of finding it on their own (in most cases).

The information is what it is......how you perceive it is up to you.

I actually have an excellent rapport with all of my scoliosis patients. They understand that they aren't victims of this condition and we are both going to work as hard as we can make it better. Simple and they respond to it quite well.

I'm sorry this experience has been so traumatic for so many of you.....it is short of like the Red pill/ Blue pill thing in the Matrix.....the red pill keeps you in your comfort zone, but isn't the reality of the situation. The blue pill is a tough one to swallow, but at least you have the opportunity to make informed decisions. It is up to you to chose which pill you want to take.......forget everything I have posted and never read it again if you want to take the red pill or print out every research article I have posted and take them to your ortho to see what his take on the subject is....(why doesn't anyone every challenge those guys anyway?)

The choice is yours........I am just the provider of the blue pill for anyone whom chooses to take it. It usually takes people a while until their pre-frontal lobes calm down and the learning, re-learning, and un-learning process can begin (AKA: the blue pill). It is a steep learning curve for some and a gradual one for others, however about half make the transition eventually. I hope you chose to be one of them.

mark
12th July 2009, 06:04 PM
If this thread degenerates any more i'm going to lock it down because to be honest its doing this site no favours at all and i'm getting truly upset at the all the negative posts and i'm not favouring pro or negative surgery here, it doesnt matter to me what ball court your in i'm just thinking of the integraty (sp) of this site and all this fighting is doing nothing but putting prospective members from joining this wonderful site.

Sorry for getting heavy handed but i've had enough and enough is enough so lets stop scoring points of one another and start supporting one another, we were a happy community before this all started so lets all rise above our fears and live in all our comfort zones. I f you don't i'm going to lock and shut this thread for good because for one i can't be bothered. I got my own poo to deal with

i'm extending an hand out to everyone here and if its seen differently well i can't do nothing about that and i'm sorry if i've upset anyone but if this argument doesnt stop then i'm gone. I got enough shit going on in my own life without coming here and having to deal with fighting

if anyone has a issue with my post please pm me rather than post in the forums as i dont want to clog the forums up any more than they already are

love you all, no matter what
mark

bluestone
12th July 2009, 07:33 PM
I dont understand where the Dr has suddenly appeared from-is he short of patients?
I liked this forum because theres never any argument-just support, unfortunately this Dr has caused some conflict which this wonderful forum never had.

zoolane
12th July 2009, 08:18 PM
Bluestone the Dr Stitzel is from american, Ok let get straight, all people on this site eg: with peolpe scoliosis or have children with scoliosis being minus or servere, are just sit back do their told, I do not think in this day and ages, with much information at 'people fingers tips' eg, internet, library or GPS that people will reseacher as much possible for their inform descision in regard treatment whether be surgey or not.

madmclw
12th July 2009, 11:31 PM
I think many of you may find the following information quite helpful in explaining some of what you are feeling. I hope it aids in your emotional recovery.....particularly the post op AIS patients who, under the impression their procedure was medically necessary, and not only cosmetic, were either lied to or seriously mislead. I would be upset too.


I'm a post op AIS patient. How can you tell me that with a curve of 90degrees, frequent pain and restricted pulmonary function that my surgery was not medically necessary? Over and over you have mentioned that surgery for AIS is purely cosmetic given that it can be prevented through methods such as yours or bracing. But what if it was not even diagnosed until 77degrees? Based on the study you presented which claimed cobb angle boundaries were made-up or not, a consultant would not brace a curve as severe as that at the end of the adolescent growth spurt because gravity is what makes it progress - you don't even need a study to know that is fact, it's dictated by the simple laws of physics.

And you know what? I'm not grieving. There has not been a single second where I have regretted that surgery. Let me think. My curve progressed from 77 to 90 in 4 months. That's 13 degrees. So at a progression rate of 13 degrees every 4 months, I'd estimate my curve to be about 155 degrees now, 20 months post surgery. I'm so sorry to use you as an example Jean, but I do believe you have a curve of that severity, and you're on full time oxygen? I'm only 16. I cannot even begin to explain how upset it makes me that you could even possibly hint that I went through everything I did simply because I disliked the way I looked. Today I met with Sal and Ali and Nutmeg, and I may have only been with them for a short amount of time but Sal and Ali both commented on how straight I was, and I'm proud of that. I would not change that for the world. And I know for a fact that neither bracing nor CLEAR nor schroth nor any other alternative methods could have got me where I am today.

I don't like what you're doing here. I know you have a right to post here as much as I do. I know you're simply posting studies to provide other points of view. I'm not denying you that. But it hurts an awful lot when you go claiming I should be grieving because I am fixed. I have not been lied to, I have not been misled. If you don't think we're being supportive then don't keep posting. Just don't. If you don't like what we're doing, then don't keep coming back. Because I've had the most incredible support from everyone on this forum, and I cannot speak for everyone so I won't even try, but I know that I would not have had it any other way.

bluestone
13th July 2009, 10:47 AM
[quote=zoolane;128051]Bluestone the Dr Stitzel is from american,



Why is on this forum then??
He should go and promote himself on the American forum.

zoolane
13th July 2009, 11:01 AM
I total agree with you, I suppose only thing I can think is that their people on this site from lots different countries.

Cheski
13th July 2009, 11:54 AM
I'm classified as a disabled student because of my fusion, but I find the definition rather bizarre given that I spend five days a week doing classes at the gym, have been on an archaeological dig for the past fortnight and am trekking to Machu Picchu for charity next year :D

But maybe you find sitting in a chair for a long time difficult and either need to walk about during exams or have a special chair.. :) My university even paid for the chair!
Your trip sounds amazing... do post more about it when you get the chance x

kytheria
13th July 2009, 12:20 PM
idiopathic adolescent scoliosis
I'm 21 and recently graduated from a massage therapy program. Little did I know going into the program I would discover how to correct the curvature in my spine. In one of my classes we learned how to massage a muscle deep in the abdomen, psoas major. After recieving massage in one of my classes MY SPINE WAS MORE STRAIGHT than it was before the session began. What I can tell from my own body is that certain muscles are tight and some are stretched beyond what is structurally normal for the erect human form, therfore my spine is contorted to accomodate, and the rest of my body has to accomodate to my structually abnormal spine. Anyways, I learned a massage modality based off of Ida Rolfs teachings called Structural Integration. I highly recommend looking into it, my life has been dramatically changed for the better. I went into school thinking I was going to start a new career, I didn't realise I had stumbled upon the key to managing and reversing my scoliosis. Another massage therapy modality to check out is Trigger Point Therapy. It helps a lot with really bad knots. The book "Awareness Through Movement" by Moshe Feldenkrais has also been very insightful and enlightening, highly recommended. When I open my massage therapy business I want to specialize in working with people who have scoliosis since I have a personal understanding of it. I will be incorporating these different massage techniques into my sessions with clients who have scoliosis since I have found them personally beneficial and have seen some amazing results in clients I've worked on. Good luck to all of you in your quest for finding the answers to this frustrating ailment.


"ROLFING STRUCTURAL INTEGRATION
A method to reorder the major body segments, Rolfing was founded by American biochemist Dr. Ida Rolf in the 1940s. Rolfing utilizes physical manipulation and movement awareness to bring head, shoulders, thorax, pelvis, and legs into vertical alignment. It allows more efficient use of the muscles with less expended energy by lifting the head and chest and lengthening the body’s trunk. A sense of lightness and greater mobility often result from Rolfing.

TRIGGER POINT MYOTHERAPY
Trigger point myotherapy is a noninvasive therapeutic modality for the relief and control of myofascial pain and dysfunction. The goal of treatment is the client’s recovery from or a significant reduction in myofascial pain. The treatment goal is achieved through a systematized approach. Treatment consists of trigger point compression, myomassage, passive stretching, and a regime of corrective exercises. Success may be measured subjectively by the level of pain reduction experienced by the client and objectively through increased range of motion, strength, endurance, and other measures of improved function. Trigger point myotherapy relies heavily on client-therapist interaction, including verbal and nonverbal elements. The myotherapist encourages the client to be personally responsible for their improvement, with attention to such factors as nutritional intake, stress, proper exercises, mechanical abnormalities, and other physical components. These elements protect the client from delayed diagnosis, delayed treatment, or contraindicated treatment, which are the concerns of first order. Trigger point myotherapy is an integrating approach to myofascial pain and dysfunction.

FELDENKRAIS METHOD
Developed by Russian-born Israeli educator Moshe Feldenkrais, this method establishes new connections between the brain and body through movement reeducation. One of two formats of instruction is used: awareness through movement and functional integration. In the one-on-one functional integration session, a teacher uses hands-on manipulation to guide the student toward new movement patterns. Awareness through movement classes are group sessions in which the teacher verbally guides students through repatterning. Feldenkrais proposed that nearly our entire spectrum of movement is learned during our first few years of life, but that these movements represent a mere 5 percent of all possibilities available to us. Habituated responses to problem areas in our lives are ingrained in our movement patterns. By retraining the central nervous system through the skeletal system, old patterns are eliminated and replaced with new skills that improve the physical, mental, and emotional functioning of the body. In this way, unconscious movement is brought into conscious awareness where it may be used as a tool for opening the human potential." (more info at www.massagetherapy.com (http://www.massagetherapy.com))

tonibunny
13th July 2009, 12:32 PM
Hello Kytheria, welcome to SSO :welcome2:

Thank you for posting this info, it's very interesting. As with other physical therapies, I have heard of people having improvements in their pain and posture following Rolfing treatments :)

May I ask you what the degree of your curvature was? Also, if there are any published, peer-reviewed clinical studies that show that this can help reduce scoliosis in the long term, please could you point us in the direction of them? I think it would be advisable for anyone to continue to be monitored by a medically qualified scoliosis specialist whilst trying out these treatments, just to ensure their curve isn't progressing.

GloomCookie
13th July 2009, 01:06 PM
[quote=GloomCookie;127765]I'm classified as a disabled student because of my fusion, but I find the definition rather bizarre given that I spend five days a week doing classes at the gym, have been on an archaeological dig for the past fortnight and am trekking to Machu Picchu for charity next year :D

But maybe you find sitting in a chair for a long time difficult and either need to walk about during exams or have a special chair.. :) My university even paid for the chair!
Your trip sounds amazing... do post more about it when you get the chance x

Sorry, maybe I wasn't making myself clear when I posted that!

I appreciate that I'm more prone to getting achey when writing essays if I'm sat badly in a a computer chair etc, but all I meant by posting what I did is that the legal definition of "disabled" does not necessarily mean that it impacts in any way on a totally active lifestyle, or mean you have to use a chair, crutches etc at all.

I guess the scare tactic of that quote "40% of people having had harrington rod surgery are legally defined as disabled" just made me want to point out that the legal definition of disabled and the reality of what people think of when they see the word are two very, very different things!

tonibunny
13th July 2009, 01:14 PM
I agree with GC, I have a Harrington Rod (as well as a Zielke, and now 2 short rods with pedicle screws) and I'm fused from T1-L4. Legally that might mean I'm "disabled". But I can still (at 2 months post-op!) scramble up and down hills, over stiles and gates, and walk for miles and miles, easily keeping up with the friend I go geocaching with :)