PDA

View Full Version : Something you should read before surgery



Shaun26
06-26-2005, 06:19 AM
If you need surgery you need it. This is not to discourage it at all. I would recommend surgery in many cases even mild ones. This is just something perhaps you could bring up with your doctor. Note that many doctors may be resistant not because of the ideas but because few people, including doctors, are interested in going the extra step, when they see no direct benefit to themselves, or they think that what we know now about scoliosis is all that we will ever know and the treatments now are the only ones.


My Article: Discouraged with the lack progress on scoliosis treatments

Part 1

I'm a 26 year old male that was diagnosed with a 20 degree curve in highschool. I don't know if it's progressed or not, but if it has, it hasn't by much. Having lived with this condition it is a subject close to my heart.

I'm saddened by the lack of developments and treatments for scoliosis. It seems to me that the medical community has been and continues to approach many mild and medium forms of idiopathic scoliosis the wrong way.

The only mystery about "idiopathic" scoliosis is the specific reason why it initiates or begins. But there are essentially only two things to look at once it has already begun and focusing on one over the other is inappropriate. The areas that need attention are the spine and the muscles around the spine. If a spine is curved it is curved either because the spinal cord has for one reason or another begun to rotate and/or because the muscles around the spine are uneven in strength, thus pulling the spine in abnormal directions.

One thing to look at is the spine itself. Is the spine strong or weak. Has the spine developed properly except that it has rotated and begun to curve. Are the discs within the spine equal in strength and size. If one can determine that all things are fine except that the spine has begun to rotate, then we must look at another feature of the back that will influence spine curves. And let me just say that there is no such thing as a 'compensatory' curve. If you have a curve in your spine, it is a curve that may weave in and out and so long as the curve exists there is nothing compensatory about it.

The second area of study should be focused on muscles around the spine. A spine may begin to curve because the spine is weak, but it may only do so if the muscles in the back allow for it. If the muscles in the back are evenly distributed, even a weak back may stay straight. However, if the muscles in the back are stronger on one side over another, it will encourage curvature in a weak spine. Again, there is no such thing as 'compensatory' muscles in a curved spine. The muscles (the shorter, stronger mucles) on each side of the spine that are distributed unevenly are the muscles helping to increase the curve in the spine, not to compensate for it. Compensatory muscle development would be muscles that develop in precisely the same area of the spine opposite to the overzealous muscles on the other side. This does not happen. When the muscles are pulled toward the right on the top portion of the spine, we see increased muscle development in the lower left portion of the spine. What we want to see is increased muslce development on the top left portion of the spine to bring the spine back into alignment. Anything short of this type of muscle development is not compensatory. It is in fact almost gauranteed to increase the spine curve rather than compensate for it. We need studies on the muscles in the backs of scoliosis patients. Are muscles of the spine all created equal or do some have intrinsic properties that make them more aggressive when pulling the spine. Can these muscles be cut away and/or transfered to the areas with weak muscles. Can this muscle be encouraged to grow in sections that lack it to begin to truly compensate a curve. We know that in people with oversized hearts (the heart is a muscle) that doctors can literally cut off chunks of the heart and bring it down to size, and the heart remains in tact and functioning optimally. Perhaps the same can be done for much less potentially fatal muscles such as those of the spine.

I think the relationship of muscles and the spine in scoliosis patients was best described by somebody else who's article I read some years ago:


To think about it logically, I compare my spine to a tent pole and my muscles to tethers around the tent pole helping it to stay upright. If I had a tethered tent pole that was leaning to one side and I wanted to straighten it, I would pull tighter on some of the tethers and loosen up on others. If I applied equal force to all of the tethers on a pole that was unbalanced to start out, it would remain unbalanced. It was the same with my body. I had to loosen up the tight muscles (tethers) and tighten up the weak muscles (tethers) supporting my spine (my center pole).

In order to straighten out my body, I had to start thinking about it like an engineer would think about straightening a tilting column. The prevailing medical view about scoliosis seems to be that it is caused by some mysterious, as of yet undiscovered gene. Besides being unproven, I don't think this view takes into account gravity and the laws of physics. People's spinal columns are not exempt from the same laws of physics as other columns.

In thinking about my scoliosis from an engineering point of view, the first thing I did was to make make sure my spine (the column) itself was strong and stable. I think the reason there is such a strong link between osteopenia/osteoporosis and scoliosis is simply that weakened columns have more of a problem staying upright. A spine with lowered bone densities is probably less likely to be able to support its weight and stay upright, and hence will bend, buckle and curve as it tries to bear weight. This is exactly why people with rickets get scoliosis.

Another area to think about is that any small pull or unbalanced force placed on a column over a period of time is going to pull the column off center.



To summarize the following points thus far, there are two areas of idiopathic scoliosis that we can say influence spinal curvature. The spine and the muscles around the spine. If the bones of the spine have developed properly (there are no malformed vertebrea) but the spine has begun to twist, we can conclude that it has to do with either the spine strength or the muscles around the spine. Additionally we have to re-orient the ways that we describe the curves and muscles we see in scoliosis patients. By saying compensatory this and compensatory that we give the impression that the spine is trying to self correct the problem. It is not. It is furthering the problem. Intervention needs to correct the problem.

Now on to treatments of medium and mild idiopathic scloliosis. It seems to me that it is in the treatments that we see the lack of focus on the two essential elements of spinal curves that I outlined above. For example, scoliosis surgery appears to always only focus on the spine without any regard for the muscles around the spine. We fuse sections of the spine together, or we brace sections of the spine using rods, and so forth. While this is fine, we could also try working with the muscles around the spine. If muscles are much shorter on on side and/or stronger on one side of a curved spine, why not remove some of it or extend it - stretch it - or attempt to attach it to the alternate side of the spine. Removing some of this over grown muscle tissue may give the spine the mobility that it needs to shift it's way back into normal alignment. While there may be difficulty in manipulating muscles around the spine, I believe that it is essential to 'curing' or correcting scoliosis. Even if a brace could theoretically straighten the spine when it's being worn, the spine would resort back to the curved state once the brace was removed because nothing has been done to the back muscles. The back muscles are still disproportionate and one you remove the brace keeping the spine aligned, the muscles would begin to twist and pull it out of alignment again. Therefore braces are only a temporary fixture. A brace cannot and will not correct the curve and it cannot and will not stop curve progression. Why have doctors in this area not been able to reach this conclusion by simple observation and common sense thinking, I do not know.

Yoga and other excercises may be fine because they ensure that the back remains mobile and elastic however, they will never cure or help the actual scoliosis. Weight lifting, using specific weight training as to work out under developed spine muscles instead of already over zealous spine muscles can also help. However, scoliosis requires very specific focus on spine muscles. When you work out or do yoga, you are working out multiple muscles even when you want to work out only a handful. Most importantly with weight lifting, one must be careful that they understand the excercise they are doing is combating rather than aggravating the scoliosis by strengthening the already over bearing muscles. Because of the nature of scoliosis, all excercises that a person can do must be assisted by surgery that can reduce the uneven distribution of muscle tissue and slowly allow the spine to regain it's natural vertical shape.

Shaun26
06-26-2005, 06:19 AM
Part 2

Things like sleep patterns, sports bags, and daily physical routines must also be taken into consideration. When I was younger, I would always sleep with my body in a certain configuration. It felt comfortable this way, and incidentally, my spine developed a curve that is reminiscient of the configuration my body had when I slept. Did my sleeping pattern cause the scoliosis or did I feel more comfortable sleeping this way because I already had developed scoliosis all those years ago and didn't know it? I don't know, however in the years after I found out, I begin sleeping in the opposite configuration. One spends many hours of their lives sleeping so trying to 'correct' or brace the curve naturally this way is something I've tried. To this day I know it would be more comfortable resorting back to the previous configuration.

I also used to carry sports bags with one strap so that the weight was unequally distributed across my back. I would suggest using a normal double strapped bag. I also began working out in 8th grade, probably too young because the spine is still developing. Any mistakes or overworked back muscles that are not noticeable at that stage may be magnified over time in the form of scoliosis. The same goes for activities such as basketball where you essentially use one half of your body differently repeatedly over the other half. When you throw the basketball using proper form, you're excercising your throwing arm more than your aiming arm and this repeated action may also mean that you're developing certain back muscles more than others.

In short, compensatory behavior is recommended. If you're used to sleeping in a specific way, sleep the opposite way. If you carry your wallet in one back pocket begin carrying it in the other. If you open doors with one hand, begin to always use the other instead to open doors. We could probably learn much from people who can write and play sports using both hands by studying their muscle development.

To summarize all points made, we have to begin taking the mystery out of most idiopathic scoliosis conditions. Common sense will tell us that a curved spine is that way because of the spine or the spine muscles and most likely an interaction between the two. Therefore any corrective effort should and must effectively take into consideration both in order to find an everlasting solution. Our piece meal approach that too often focuses on one over the other, or over emphasizes ineffective solutions such as yoga, have led the medical community to an impasse and there will be no breakthrough until these lines of thinking are dramatically changed. Perhaps it will take more peole suffering from the condition to propose these different approaches because living with it gives one intimate knowledge about it. If we continue to tread the current path, you and your children (who may be prone to mild scoliosis) will continue to suffer life long discomfort and even pain without any hope for solution.

SandyC
06-26-2005, 11:07 AM
Shaun,
OK.....so are you selling something?

LindaRacine
06-26-2005, 12:26 PM
This seems more appropriate for the non-surgical forum.

--Linda

Shaun26
06-26-2005, 02:10 PM
No not selling anything... just offering advice and hopefully a thought provoking discussion for those that share my condition. I was thinking some of this stuff is something you could take up with your doctor. Alternate ways of thinking about surgery and the surgery that doctors can investigate regarding scoliosis. As I said in my post, focusing on the spine AND the muscles would be a much more effective solution than just the bones. I think it's worthwhile for somebody in the medical community to research it. Your doctor may pass it off as saying it's too difficult or give other excuses right at the start because many people are not interested in thinking outside of the box.

Do you not find it frightening that after some 5 decades of research on scoliosis that we still are in the dark about how to fix it? We're just using the same old methods that have proven ineffective for the past 50 years. I want to see change and progress in this field. Scoliosis effects 1 out of ever 100 girls and 1 out of every 200 boys so I understand if the medical community feels the numbers are so small it's not a priority but when you're living with this condition it's the pits.

Being somebody that suffers from scoliosis, I think it's important that I offer to anybody that wants to listen, especially medical researchers, my thoughts and feelings about scoliosis. Perhaps we are the ones that can give a doctor who doesn't suffer from it that bit of insight he or she needs to make that medical breakthrough.

Clearly all of our current methods seem to fall short with the exception of fusing bones together which limit mobility. If we want to make headway in the area of scoliosis treatments we need to propose different ideas. That's the sole purpose of my post. Because I would love to be able to cure my condition. Right now I know that I will live my entire life in discomfort.

I think the topic is good for basically all forums but there is no all encompassing forum on this board.

Karen Ocker
06-26-2005, 03:27 PM
Shaun:

I do not know your professional background. There has been lots of painstaking research on the baffling problem of scoliosis. Not only the idiopathic kind but other causes such as neurological, traumatic, congenital and the kind resulting from polio. This is an incomplete list of causes.

Various things have been tried before the era of surgery including traction, exercise, chiropractic and casts. Believe me-greater minds than ours have been wresting with this problem for decades. It's permanent correction needed not short-term. So far the only successful PERMANENT correction involves bracing in skeletally immature people or spinal surgery. Those are the hard facts.

As a medical professional -the idea of shifting muscles around would involve a lot more trauma to the body because more nerves would be cut than just for the spinal fusion. Moving the spine automatically takes the muscles with them.

I gave some links on another thread.

Just go to the National Library of Medicine on-line:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed

and see the publications from around the world regarding scoliosis. Just type "scoliosis" in the search window.

Shaun26
06-26-2005, 04:07 PM
Shaun:

I do not know your professional background. There has been lots of painstaking research on the baffling problem of scoliosis. Not only the idiopathic kind but other causes such as neurological, traumatic, congenital and the kind resulting from polio. This is an incomplete list of causes.

Various things have been tried before the era of surgery including traction, exercise, chiropractic and casts. Believe me-greater minds than ours have been wresting with this problem for decades. It's permanent correction needed not short-term. So far the only successful PERMANENT correction involves bracing in skeletally immature people or spinal surgery. Those are the hard facts.

As a medical professional -the idea of shifting muscles around would involve a lot more trauma to the body because more nerves would be cut than just for the spinal fusion. Moving the spine automatically takes the muscles with them.

I gave some links on another thread.

Just go to the National Library of Medicine on-line:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed

and see the publications from around the world regarding scoliosis. Just type "scoliosis" in the search window.

Hi Karen,

Thanks for your feedback. I disagree with some points. I don't think that greater minds than us have tackled the problem. Doctors are not necessarily of greater mind than you or me. They went to school, memorized treatments, and work at a job. Most of them do their job like you and me. They do what a book says and then they go home and forget about their work day until tomorrow. It takes the exception, an exceptional person be it a doctor or otherwise, to take a different stance and observe something in a different light. There are examples of this throughout medical history.

All of the various treatments that I've ever read about deal with treatments that I could tell you as a layman could never work. Chiropractics is a sham and nothing more than an overrated massage. Massage relaxes tense muscles but cannot do anything to reverse curved spines. Excercise cannot by itself effectively combat scoliosis because every movement you make involves numerous muscles. If you're excercising, you will not only be excercising weakened muscles, but you will also be excercising the muscles that are already too strong, and you don't want to do that. Casts, like braces, are not a cure nor a correction. A cast or brace is only a 'place holder' for lack of a better term. Unless it's worn ever second of every day, every year for the rest of ones life AFTER the first signs of scoliosis appear, it can never work. If the spine is already twisted and a brace holds it from becoming more twisted, it's doing nothing to 'untwist' the already curved spine. It's also not doing anything about the muscles that have twisted the spine in the first place which explains why the condition almost always continues to worsen after the brace has been removed.

All of these so called treatments are like alternative drugs. They're ineffective, obtuse, and rudimentary, if not medieval.

I agree that spinal surgery is the answer. What I'm saying is that spinal surgery need not only focus on the spinal bones. It should also take into account the muscles, tendons, ligaments, around the spine. Removing some tissue or stretching it out may very well cause trauma. All surgery does, however for mild forms of scoliosis I see this as a practical and intuitive approach. A skeleton cannot move on it's own. Assuming the bones in the spine are normally formed, the only thing that allows it to move are the surrounding tissues. Therefore we must place emphasis on these tissues if we are to ever find a realistic cure.

This type of basic, fundamental thinking is lacking in scoliosis research. Note that I'm only focusing on mild and medium forms of scoliosis in people who are otherwise healthy. Muscles are healthy, bones are healthy, but for some undetermined reason, they developed scoliosis. Things become more complex if other conditions co-exist with the scoliosis.

LindaRacine
06-26-2005, 04:20 PM
What I'm saying is that spinal surgery need not only focus on the spinal bones. It should also take into account the muscles, tendons, ligaments, around the spine. Removing some tissue or stretching it out may very well cause trauma. All surgery does, however for mild forms of scoliosis I see this as a practical and intuitive approach. A skeleton cannot move on it's own. Assuming the bones in the spine are normally formed, the only thing that allows it to move are the surrounding tissues. Therefore we must place emphasis on these tissues if we are to ever find a realistic cure.

The vertebrae in a scoliotic spine are wedge shaped. So, surgery to the soft tissue might temporarily reduce a curve, but the spine is always going to try to curve again.

--Linda

Shaun26
06-26-2005, 04:28 PM
The vertebrae in a scoliotic spine are wedge shaped. So, surgery to the soft tissue might temporarily reduce a curve, but the spine is always going to try to curve again.

--Linda

Hi Linda,

This is true for some scoliotic spines and for those instances I was conclude that the cause of the scoliosis is not idiopathic at all. I would say that the scoliosis is a direct result of a spine that encourages it because of the shape of the vertebrae in the spine is abnormally formed. This may or may not run in families and just like other conditions that run in families without a known reason, we could accept and live with it, and run tests on it in schools to find those at risk and correct the problem in it's infancy.

Even in your example, we are at a 'we can't do anything' phase when things can be tried. We create new heart valves for people, new colons. Perhaps we could create sythentic vertebrae to either replace or attached to a malformed vertebrae so that it's more normally shaped and discourages the back from ever going back to it's previously twisted form. This in conjunction with surgery on the muscles causing the problem could lead to very positive results.

Not all scoliosis is created equal. I don't think that the bones in my spinal curve of 20 degrees are wedge shaped. They're shaped just fine but the muscles around the section that is curved is dramatically shorter, stiffer, and larger on that one side. Thus, it's no surprise to me that my spine has shifted in it's direction. Therefore, reducing or cutting away at this tissue would not only provide relief but may also help to cure the problem.

LindaRacine
06-26-2005, 05:34 PM
Shaun...

In all cases of structural scoliosis, the vertebrae are wedge shaped. If you, or anyone else on this forum have functional scoliosis, you don't need surgery (be it on bone or soft tissue). A few visits to a good physical therapist should do the trick.

--Linda

Shaun26
06-26-2005, 05:49 PM
Hi Linda,

Thanks very much. I may try that again, though I've been to physical therapists before with little success. Perhaps I need one that deals specifically with scoliosis. Not sure how hard or easy it is to fine such a therapist. However, therapy in my experience is a lot like excercise and massages and can do very little to alleviate long term discomfort associated with scoliosis. It think we do ourselves a disservice when we content ourselves with treatments that are only a temporary feel good rather than helping to solve the underlying problem. It leads to a life of dependancy, lots of expenses, and eventual degeneration because the problem is never actually solved.

I believe that regardless of the therapy, unless the curve is straightened I will always suffer discomfort. The fact that the spinal column is not straight inherently means there is unnatural added pressure on areas of the spine and less on others. Even 80% of people with 'normal' spines experience back pain in their lives so having an degenerative condition that places extensive pressure on areas of the spine will increase that number probably into the 99% range. I frequently read articles regarding scoliosis and they say it rarely causes pain or discomfort when it's less than 30 degrees. My experience and the experiences that I read from other people on forums from people that actually have the condition seems to be quite different. It seems to me that almost everybody with a curved spine experiences continuous discomfort.

The only cure is to straighten the back and I certainly don't want to stop at solving my own problem. I'd like to see advances in all types of scoliosis treatments. I think focusing on scoliosis in otherwise 'healthy' patients is the first step. If something can be done in this area, naturally we will have a better understanding of scoliosis and help those who suffer multiple conditions including scoliosis.

I think that research would best be served in areas of regenerating, replacing, or adding structure to mal formed vertebrea, and the padding tissues between the vertebrae as well as studies on the muscles, tendons, ligaments, and other things surrounding the spinal column in scoliosis patients. Perhaps scoliosis patients have two types of muscles in their back... one that is normal or begins to atrophy while another experiences hyper growth. Perhaps one side of the muscle tissue ofthe back is more dense than the other. The same goes for the cushions within the spine.

Until we get down to the finest details in these areas we will never understand scoliosis or alternate remedial or corrective measures. My intuitions tells me the answers to huge normal bones in somebody's back becoming twisted is the direct product of the muscle buildup surrounding it. There are only so many things in the back that can be responsible for it.

My spine is only bent 20 degrees, barely noticeable, yet it's problematic for me. I can't imagine what life must be like for people with larger curves. Something needs to be done and when I say this I mean more than discussions back and forth about what brace one uses. I mean real solutions, different solutions than those we already use. Because out of all of them only surgery by fusing bones together has proven successful. We're treading old tired ground. We need new procedures, new discussions, new techniques.

SandyC
06-26-2005, 06:02 PM
Shaun,
Yes, scoli can be frightening. but so is MS/Parkinson's/Transverse Mylitis and a host of other long term conditions/diseases that science has no answer for. For all of these, moving muscle may help, TEMPORAILY, but does not cure the disease process or in the case of scoli...bone deformity.

Frustration/anger and wanting an "easy fix", just anything to avoid surgery, make all of us vulnerable to claims of all kinds. It can also make us see what we want to see....which is not necessarly the reality.

Shaun26
06-26-2005, 06:12 PM
Shaun,
Yes, scoli can be frightening. but so is MS/Parkinson's/Transverse Mylitis and a host of other long term conditions/diseases that science has no answer for. For all of these, moving muscle may help, TEMPORAILY, but does not cure the disease process or in the case of scoli...bone deformity.

Frustration/anger and wanting an "easy fix", just anything to avoid surgery, make all of us vulnerable to claims of all kinds. It can also make us see what we want to see....which is not necessarly the reality.

I actually want to undergo surgery but I'm always advised against it because my form of scoliosis is mild and I'm a healthy young man. Nobody wants to see me go through complications, death, and partial spinal immobility because I'm young, strong, and was athletic (it's been years since I've played sports... highschool was a long time ago). I don't want any of those things either but I also don't want the constant discomfort, the constant need for stretches, the stiffness.

What I've suggested above is no easy fix. I've suggested surgery as we do it now and newer forms of surgery currently not done. I've also suggested complete lifestyle changes... that in themselves can never cure the problem but may realistically slow down the process of mild scoliosis. I've recommended rather advanced research into areas of the spine that seem to have be the most obvious yet locatios to study yet they appear to be the most overlooked. Muscles of the back are extremely important and must be researched to determine why they become unevenly distributed. The muscles allow us to move, walk, get up, sit down, everything.

I've disregarded all the easy fixes... massages, therapy, chirpractics, excercise are not solutions.

There are many diseases and conditions for which there is no answer but there are also many that we have found answers and cures to. We have to start somewhere. As somebody who suffers from scoliosis I selfishly put scoliosis at the top of my priority list. Let's try to cure it.

Celia
06-26-2005, 06:49 PM
Good for you Shaun ! I think this world needs more people like you.



Celia

Karen Ocker
06-27-2005, 09:50 AM
Your statement:
"I'm a 26 year old male that was diagnosed with a 20 degree curve in high school. I don't know if it's progressed or not, but if it has, it hasn't by much."

Shaun: The only way to know whether your curve has progressed since high school is to have it measured by an adult scoliosis specialist. Most curves do not show until they are significant. Some adult curves can increase 1-3 degrees a year; many do not.

A 20 deg curve should not cause pain. Pain is caused when the increasing curves squeeze the spinal nerves between the curving vertebrae. Spinal nerves branch out between each and every vertebra.

Many of us, including myself, have been to hell and back with our spines. I have difficulty agreeing with or even taking someone seriously who gives advice posting dubious web sites who has not "walked the walk".

No matter what the cause of scoliosis we here who have it need to deal with it today. I do not find speculating about causes possible treatments helpful. I
suggest contacting some scoliosis researchers and offer to help in any way.


Being a medical professional myself I respectfully disagree take issue with your assessment of doctors/researchers. This has not been my personal life experience.

Karen

Shaun26
06-27-2005, 10:15 AM
Shaun: The only way to know whether your curve has progressed since high school is to have it measured by an adult scoliosis specialist. Most curves do not show until they are significant. Some adult curves can increase 1-3 degrees a year; many do not.

A 20 deg curve should not cause pain. Pain is caused when the increasing curves squeeze the spinal nerves between the curving vertebrae. Spinal nerves branch out between each and every vertebra.

Many of us, including myself, have been to hell and back with our spines. I have difficulty agreeing with or even taking someone seriously who gives advice posting dubious web sites who has not "walked the walk".

No matter what the cause of scoliosis we here who have it need to deal with it today. I do not find speculating about causes possible treatments helpful. I
suggest contacting some scoliosis researchers and offer to help in any way.


Being a medical professional myself I respectfully disagree take issue with your assessment of doctors/researchers. This has not been my personal life experience.

Karen

Hi Karen,

I probably should and will get my curve checked out again just to know if it's doing ok or getting worse. I sure hope it isn't getting worse.

I've had mild pain. more like a numb feeling in my back for years in the area of my scoliosis. I used to workout frequently so perhaps this had some effect on why I feel it while others with the same curve as I do, don't.

I'm not clear on your comment about walking the walk. I have scoliosis so I have certainly walked the walk. I have not posted any dubious sites. Can you please show me a single link in this thread that I've posted?


No matter what the cause of scoliosis we here who have it need to deal with it today. I do not find speculating about causes possible treatments helpful. I

I agree we have to deal with it no matter the causes and that's the point of my thread. I've been saying all along that we're not dealing with it and that we should. Current methods do not deal with it with the exception of surgery. Speculating about possible causes and treatments IS helpful. Why? Because that's how science progresses and that's how we become enlightened. We first must ask questions. This is the foundation of all science. The scientists and doctors that made differences in our lives are those that took the extra step and did things that other doctors were unwilling to do or try because they could not see the obvious merit in it. Instead of following less fruitful methods, the time is now to begin thinking of better ones.

If we fine the cause, perhaps it will lead us to the solution. If you find this problematic, I cannot take you seriously as a medical professional and I would argue that you're being very irresponsible. Rather than being resistant to potentially enlightening changes, try to embrace the possibilities. These areas of research are still young. Advances are just around the corner but we have to look around the corner to see them instead of being content staying behind the corner.


Being a medical professional myself I respectfully disagree take issue with your assessment of doctors/researchers. This has not been my personal life experience.

My comment about doctors was a generalization. If you disagree with it you're being dishonest. It's not to say their are many professionals that take their jobs seriously. There are just as their are people in every field and every walk of life that take their jobs seriously. But most people see their job as a job. I don't take my personal experiences alone to make these judgements because one's own experiences may not be representative (it may be anecdotal instead). I take statistics, obervations of others, and common sense thinking to come to my conclusions.

Shaun26
06-27-2005, 12:00 PM
Karen, furthermore it would seem that my train of thought (what you call speculation) in fact does have merit and is something that men before me have thought about and have actually begun studying.

http://www.scoliosis.org/forum/showthread.php?t=2113

A hunch can be a valuable tool, especially when it has a basis in reality. The spine is not some hidden germ that's hard to see. It's a large physical portion of the body. Bones are moved by muscles. Healthy shaped back bones that are twisted are being twisted by muscles. That's where we must look to find out why and stop it. It isn't rocket science, and even rocket science can be learned.

Anything short of that and we will continue to wallow in empty discussions about ineffective procedures like back braces for another 50 years.

As a medical professional interested in helping people get better, you should be more than happy to listen to ideas that may help people.

Shaun26
06-27-2005, 12:28 PM
here are some links that should interest everybody involved in scoliosis. This is real promising stuff and the results of such studies indicate that it is the area in which further studies should be conducted.

http://www.biomech.com/printable/index.jhtml?articleID=59302012

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Abstract&list_uids=9765036

What has to be done now is taking what we've learned from such studies and applying it in the operating room. That's the next logical step. It will take trials, caution, and care, but ultimately (I believe) this will lead to the solutions we are looking for.

Somebody suggested botox injections... a muscle relaxant to the strong muscle. I've thought about it this too. This is simple logical thinking and it's worth a shot. One doesn't even have to be a doctor to see the possibilities in these endeavours.

Procedures to allow for these types of treatments need to be created. Hopefully it's just a matter of time.

Karen Ocker
06-27-2005, 05:44 PM
The dubious links I refer to are the ASCO SYSTEM ones you posted.

The recent link referring to exercise. This is being used, in Germany, at the Schroth Scoliose Klinik. They treat persons as INPATIENTS using intensive physical therapy exercises but they also use a special brace. They get good results with small curves in adolescents but some still need the surgery. They recommend surgery for curves 40 deg because they tend to progress throughout life.

The other link is 7 old research which suggests muscle changes FROM scoliosis.


Are you a chiropractor?

Shaun26
06-27-2005, 11:07 PM
The dubious links I refer to are the ASCO SYSTEM ones you posted.

The recent link referring to exercise. This is being used, in Germany, at the Schroth Scoliose Klinik. They treat persons as INPATIENTS using intensive physical therapy exercises but they also use a special brace. They get good results with small curves in adolescents but some still need the surgery. They recommend surgery for curves 40 deg because they tend to progress throughout life.

The other link is 7 old research which suggests muscle changes FROM scoliosis.


Are you a chiropractor?

I posted the ASCO SYSTEM link asking people if they've used it because I'm not familiar with that treatment. The link showed promising results. If inquiring about treatments is dubious I apologize. I thought we were all working toward a common goal here of correcting scoliosis.

I'm not a chiropractor and if there is anything dubious in the medical profession it is chiropractics. I think it's good that most true medical professionals look at chiropractics for what it is. I've been to chiropractors and they're nothing more than massage therapists with a different name.

I think that studies and treatments like the ones above indicate that scoliosis can be corrected almost completely but that we need more advanced techniques and understanding of the spine and the muscles involved. If there is research into isolating muscles, relaxing muscles, stretching, removing, or diffusing specific muscles using physical or chemical means, that scoliosis research would greatly benefit from it.

Karen Ocker
06-29-2005, 09:02 AM
Shaun:

The strength and advantage of this particular scoliosis forum is the shared personal experiences with others.

It has:

1) Helped steer scoliosis sufferers from ineffective treatments that other forum members have already tried.

2)Educated members about the different forms of scoliosis and their likely outcome.

3)Helped interested members find compassionate, competent professionals to treat for their particular form of scoliosis.

4)Supported patients and families through the experience of diagnosis, "waiting and watching" and any chosen subsequent treatment.

5)Supported patients for whom no treatment is possible enabling them to reduce pain and disability.

6)Encouraged and supported current research for the successful cure of scoliosis.

To guess and speculate as to the cause, whining about current treatments, bashing medical professionals and advising members without knowing what you are talking about is totally unproductive.

Shaun26
06-29-2005, 09:45 AM
Shaun:
The strength and advantage of this particular scoliosis forum is the shared personal experiences with others.
To guess and speculate as to the cause, whining about current treatments, bashing medical professionals and advising members without knowing what you are talking about is totally unproductive.

No, what I'm doing is productive. To guess and speculative as to the cause is exactly what medical professionals are doing when they conduct studies... it's the best way to find answers. The foundation of all studies are hypotheses and the definition of a hypothesis is that it is an educated guess. Whining about current treatments is a gross mischaracterization on your part. Making people aware of the actual benefits of treatments and the evidence for those treatments is not whining, it's informing. Again, bashing medical professionals is not what I'm doing. I'm supporting some types of studies over others. If you think that all studies are created equal, and that it's not in the best interest to pursue those that provide the best understanding of what we're dealing with then you have no place giving advice. What you're doing is toeing the party line instead of giving people hope that there are better treatment possibilities. Almost everything I've said has been backed up by studies and research thanks to people who have posted studies regarding them.

You have done nothing to further the discussion of scoliosis. It's people like you, the close minded that only change their perspective when a medical doctor begins saying exactly what I am saying. And thankfully those doctors are now beginning to condcut the studies I'm advocating (and not surprisingly they're showing the most positive results).

If you think I don't know what I'm talking about, please provide examples to support your claim. What have I said that gives you the impression I don't know what I'm talking about? Give specific examples, I challenge you. If I've given advice of any sort, I will always preface it by saying one should consult a professional first. It's like you said, the forum is intended to share experiences and ideas. Why are you so gung ho on muting positive discussions?

If you want this forum to continue to do all the things you outlined above, you would open your mind rather than simply disparaging those who are interested in further research and treatments.

SandyC
06-29-2005, 11:12 AM
Karen,
THANK YOU for your input.

Shaun,
PLEASE STOP WHINNING. At a 20 degree curve I'm having a very difficult time understanding what it is your complaining about?? Perhaps you need to see professional help (psychiatic) in understanding what it is that is bothering you. At 20 degrees you can't see it (your curve) and you certanly should not be in pain. If you are in pain, perhaps you should rule out other possible physical problem. Going on and on about the same thing is now very old..please stop

monie
06-29-2005, 03:04 PM
Hi Shaun, First of all, I'd like to say that I read all your posts very thoroughly, and I applaud you... You seem to believe very strongly in these ideas of yours, and such dedication deserves some level of respect. That being said, I have to say that I agree with SandyC and Karen... PLEASE STOP WHINING. You don't feel our pain, you don't know what we go through daily, or how hard it is to even do the simplest daily chores that most people take for granted...
It'd be really easy for me to sit and tell cancer patients about alternative methods of treatment... As easy as it would be, it would be equally ignorant. I don't know what they go through or what they feel.. reading up on how they feel does NOTHING to give me a clue either...
Basically, all I'm saying Shaun, is that I come to this forum for help... I come here when I've had really bad days and its all I can do to sit up straight to type... I come here because I know there are people here who go through what I'm going through, or who have been through it... I try to support them, and hope that they support me... I'm scared and nervous enough about surgery as it is.. Please stop. Its not fair to us. You wouldn't go to a cancer institute and remind the patients that 'SMOKING KILLS'. Stop it please.

Shaun26
06-29-2005, 03:55 PM
Karen,
THANK YOU for your input.

Shaun,
PLEASE STOP WHINNING. At a 20 degree curve I'm having a very difficult time understanding what it is your complaining about?? Perhaps you need to see professional help (psychiatic) in understanding what it is that is bothering you. At 20 degrees you can't see it (your curve) and you certanly should not be in pain. If you are in pain, perhaps you should rule out other possible physical problem. Going on and on about the same thing is now very old..please stop

I fail to see what I'm whining about. If wanting better treatments is whining I'll wind until the dogs come home. Perhaps the more we whine and the louder we whine, those who can make a difference will take notice. Ideas make differences if they're passed from one individual to another. Be an active agent in your life and don't necessarily wait for something to happen. You can ask your doctor about these studies and new treatments. You don't have to wait for him to volunteer it. I see nothing wrong with this approach. I see it as positive thinking, something that in a community like this should offer hope and promise.

If I've gone on about the same thing (which I don't think I have) it's to address questions people have asked me. When you call upon me to defend or explain my position I'm happy to do so.

Shaun26
06-29-2005, 04:04 PM
Hi Shaun, First of all, I'd like to say that I read all your posts very thoroughly, and I applaud you... You seem to believe very strongly in these ideas of yours, and such dedication deserves some level of respect. That being said, I have to say that I agree with SandyC and Karen... PLEASE STOP WHINING. You don't feel our pain, you don't know what we go through daily, or how hard it is to even do the simplest daily chores that most people take for granted...
It'd be really easy for me to sit and tell cancer patients about alternative methods of treatment... As easy as it would be, it would be equally ignorant. I don't know what they go through or what they feel.. reading up on how they feel does NOTHING to give me a clue either...
Basically, all I'm saying Shaun, is that I come to this forum for help... I come here when I've had really bad days and its all I can do to sit up straight to type... I come here because I know there are people here who go through what I'm going through, or who have been through it... I try to support them, and hope that they support me... I'm scared and nervous enough about surgery as it is.. Please stop. Its not fair to us. You wouldn't go to a cancer institute and remind the patients that 'SMOKING KILLS'. Stop it please.

I experience pain with my curve. As Sandy said, maybe I shouldn't but at 20 degrees but I do. It may not be as severe as yours but it's there. There are people with curves greater than 40 degrees on here who said they don't experience pain. Some have pain, others don't, but we all share the goal of living healthier straighter lives.

I don't see how I've not supported anybody here. I'm doing my best to support people. Sometimes it takes a little more effort than sitting on the sidelines hoping the pain will go away or waiting for the doctor to treat you effectively. All I'm saying is that some new treatments show promise and that you may want to investigate them with your doctor. How is that not supporting the group? This is powerful information and may mean continued pain for you or cure. If you want help, that's all that I'm offering but I'm being told not to by you and others for reasons unknown.



You wouldn't go to a cancer institute and remind the patients that 'SMOKING KILLS'.

How does this analogy make any sense with what I've said. Have I said to people that scoliosis kills? I don't get it.

rachael
06-29-2005, 04:38 PM
Maybe I can offer a little help...
Shaun, I think that part of the problem people may have with your posts are that one of the first things you have said is that you are 26 and have not had your curve checked since you were in high school, and then it was 20 degrees. You are bringing up many points about research and progression with fixing scoliosis, and it seems that you have done much research, however I find it odd that you haven't gone to the trouble to have your own back checked. If you haven't grown since your last check, it is not likely that your curve has progressed much (but not impossible). I wonder though, if you suffer from so much pain, how come you haven't just gotten checked. There could be a simple solution in your case, you will never know until you are checked. I agree that you shouldn't be in so much pain due to a 20 degree curve, I am concerned that maybe something else may be going on back there, and would strongly urge you to get it checked out.

Shaun26
06-29-2005, 04:56 PM
Maybe I can offer a little help...
Shaun, I think that part of the problem people may have with your posts are that one of the first things you have said is that you are 26 and have not had your curve checked since you were in high school, and then it was 20 degrees. You are bringing up many points about research and progression with fixing scoliosis, and it seems that you have done much research, however I find it odd that you haven't gone to the trouble to have your own back checked. If you haven't grown since your last check, it is not likely that your curve has progressed much (but not impossible). I wonder though, if you suffer from so much pain, how come you haven't just gotten checked. There could be a simple solution in your case, you will never know until you are checked. I agree that you shouldn't be in so much pain due to a 20 degree curve, I am concerned that maybe something else may be going on back there, and would strongly urge you to get it checked out.

Basically when I was diagnosed I wanted to get it fixed immediately but I was told that with such a small curve surgery was not recommended. They told me to go to a chiropractor which I did for some time without much success, other then feeling good temporarily. At that time another X ray was done and the chirpractor told me to keep going to him for treatment. He said I had a healthy back, bones were healthy but that some of my vertebrae in the vicinity of the curve were that of a 30 year old's and that over time it would degenerate.

The pain that I have is not sharp, it's a numb, dull pain just in the middle of my back. I lived with it for years just thinking that adjusting myself and stretching would suffice when needed. In the past 2 years I started doing specific weight training because it just became so uncomfortable. The training reduced much of the tension and when I look at my rib cage and side profile I don't see any noticeable changes. If anything the curve appears to have decreased slightly. But the numb pain itself may also be due to the fact that I spend most of my days sitting down in front of a computer for my online business. I do updates on my sites 6 days a week and sit for most of the day.

I figured that surgery would be my only cure and I still think it is, perhaps one of the newer methods like botox injections (instead of rods etc) considering my scoliosis isn't so severe. I guess I haven't felt completely compelled to get it checked out again but I should and will soon. In the years following I've thought long and hard about what I may have done to contribute to it's development since I don't know of anybody in my family that has it and I'm an otherwise healthy person. I stumbled upon this site recently and thought I'd share my thoughts and see if others felt similarily.

When I visited the chiropractors and doctors the feedback I often got from them was that my scoliosis isn't severe so I should basically live with it. When I asked about treatments like relaxing my strong muscles (at that time I didn't know studies were done on this) I was told it was too difficult. The impression I always got was that with a small curve I'm not a candidate for surgery or any real corrective treatment aside from living with it and trying to deal with it as is.

rachael
06-29-2005, 06:54 PM
I appreciate the explanation...I think that's the kind of thing that most people on this site want to hear...personal experience.
It sounds to me like it is other things contributing to your back pain other than the scoliosis (but I am no doctor). My back never bothered me more than it did after a few chiropractic visits. Also, I know sitting at a computer is a common cause for back and neck pain/tension. I hope you have a chair with good support.
As far as surgery in your case, I don't think it would alleviate your back pain. In most corrective surgeries for scoliosis (this is my impression...I could be wrong) it takes care of some major issues such as the spine interferring with other organs and severe pain due to the pressure of the curve. The surgery comes with a whole new set of problems though, just read anyones posts that have had the surgery with the issues they deal with now and for the rest of their life. Although these new issues aren't as severe, they still cause some discomfort and pain.
You pointed out that the chiropractor said the vertebrae in your curve could degenerate. I don't know if he/she was referring to the discs degenerating, but I know this is a common cause for back pain and is not always scoliosis related, although I guess it could encourage it.
I would be weary of getting a diagnosis about scoliosis from your chiropractor unless he/she has much experience with treatments.
I have found that what the docs and chiropract say about living with mild pain and mild curves is not an uncommon response.

carebear23
06-29-2005, 07:36 PM
:) Thanks for writing about your experience Shaun.

I hope you do get checked soon as some people think their curves are getting better when they are actually getting worse.

I never experienced severe pain really until my spine started rotating.. which I never found out about until recently.

Best of Luck!

green m&m
07-03-2005, 02:19 AM
The reason scoliosis does not get a lot of attention in the medical community is because it's not a fatal, life-threatning condition. (Except for very small percentage of cases..)

If you look around...you'll see what I mean. I have a very common (1/4000) genetic disorder that has been known in the medical community for over 200 years. But because only a very small percentage of ppl w/ it are very severly affected.. there weren't much research on it until about 30 yrs ago.

Anyway, if you feel so strongly about what you said..why don't you do something about it? You won't reach lot of audience posting on a message board, and certainly not anyone in the medical community...since after all this board is geared toward the general public.

spincon58
07-04-2005, 11:56 PM
I hope I don't get killed for voicing my opinion on this subject...First I do not believe we are here to judge anyones pain level....everyone experiences pain in all different levels....When I was in my 20's I had a 26 degree curve and I was in pain all the time...to think this forum is telling Shaun he doesn't feel pain because his curve is at 20 is very wrong....If he say's he's in pain, let's leave it at that//...the second thing , this is only one man's opinion based on HIS knowledge of scoliosis research......I do not believe he came to this forum to start any heated debate with any of us..I believe he believes he has an idea to help.....all ideas are welcome..this is a free speech forum...I think his posting was way to long and repetively....as he was also feeding off of our replys....
Advice...Have your spine xrayed...check out your curve....see a pain management specialist...Physcial threapy helps....read all of NSF archives, and learn....maybe your opinions will change.....good luck, and feel free to post any time ...

survivor
07-12-2005, 11:10 AM
Shaun...

In all cases of structural scoliosis, the vertebrae are wedge shaped. If you, or anyone else on this forum have functional scoliosis, you don't need surgery (be it on bone or soft tissue). A few visits to a good physical therapist should do the trick.

--Linda


Linda - are you a physician or in the medical field? You seem to have a vast knowledge of the medical field?

Dawn

survivor
07-12-2005, 11:19 AM
Shaun26,

If I am understanding your posting correctly, you have not yet had any type of surgery to correct a deformity in your spine? Is that safe to assume? It is very interesting to me also how the muscles play a roll in scoliosis. What I dont feel is that the muscles are the controlling factor. I feel that everyones body is different and every degree of curve is different and yes you do see scoliosis patients with humps on their backs, uneven hips etc. I feel the muschles move with the movement of the spine and that for example the hump on ones shoulder area is not the muscle but the shift in the rib cage.

I think until you have the surgery or consult with a physician regarding you condition, discouraging individuals from having surgery due to possible muscle shiftings is rediculous.

Dawn

LindaRacine
07-12-2005, 11:37 AM
Hi Dawn...

Nope, not a physician, nor do I have any medical training. I've just been involved in helping patients find resources for a long time. You might want to check out my website:

http://www.scoliosislinks.com

Thanks!

Regards,
Linda

Shaun26
07-14-2005, 07:52 PM
I think until you have the surgery or consult with a physician regarding you condition, discouraging individuals from having surgery due to possible muscle shiftings is rediculous.

Dawn

Did you bother to read the first two sentences in my post in this thread. The very two first sentences. I'll quote them for you:


If you need surgery you need it. This is not to discourage it at all. I would recommend surgery in many cases even mild ones. This is just something perhaps you could bring up with your doctor.

Don't fret, you weren't the only one that missed it.

Shaun26
07-14-2005, 07:54 PM
On a lighter note, I'm going to get checked out soon. I'm also in correspondence with http://www.consultingorthopedists.com inquiring about the possibility of botox treatments and the like. ;)

Shaun26
07-14-2005, 08:08 PM
Lastly, 'surgery' is something that I want and I only have a 20 degree curve so the last thing I'd be interested in is discouraging people from having it. Obviously it should be taken on a per case basis. I feel that if I can correct my spine completely for instance with botox treatment 'surgery' if we can call it that, it will provide evidence that scoliosis can be corrected completely.

My belief that muscles often (but not always) play a significant role in the development of scoliosis should in no way conflict with scoliosis patients wanting or needing to have surgery.

Shaun26
07-14-2005, 08:12 PM
Perhaps it's the thread title that misled people into thinking this would be a thread negating the use of surgery because I called it "something you should read before surgery." Therefore many people were primed to think I was against surfery and read everything I wrote with this preconception. That's not the case at all. I should have chosen my thread title more carefully, but I was just cutting and pasting the same thread in many forums when I came here not realizing that it's not very busy here and that people actually take the time to read most of the forums. I just wanted to get the most exposure possible in the hopes that more people would read my post and give me feedback on my thoughts. ;)

survivor
07-14-2005, 10:25 PM
Did you bother to read the first two sentences in my post in this thread. The very two first sentences. I'll quote them for you:



Don't fret, you weren't the only one that missed it.


Yes I did read what you wrote. Thank you for the re-quote, but it wasn't necessary. Many people don't have surgery because they are frightened by articles such as yours. My curve was 72 degrees, after 2 surgeries it is still 52 degrees. There is no way to completely correct scoliosis, so if there is someone thinking that there is a cure all, you may wish to think again because there isnt. Do the research, learn all you can and ask a lot of questions.

Dawn

Shaun26
07-15-2005, 07:33 AM
There is no way to completely correct scoliosis, so if there is someone thinking that there is a cure all, you may wish to think again because there isnt. Do the research, learn all you can and ask a lot of questions.

Dawn

There were people who said it was impossible to sail across the world, fly to the moon, cure diseases. But those things can be done now. Your defeatist attitude is one that is shared strongly in this community. Maybe it can't be cured 100% of the time, but I think much more can be done and that it can be cured for many people. We just have to have the technology available and people willing to take a chance (doctors + patient).

JanM
07-16-2005, 01:01 AM
I really don't think she has a defeatist attitude. Those of us who have been reading these message boards for quite a few years have seen many people over time who have come on and proposed some new way to look at scoliosis, or some new way to fix it, etc. But then we wait and watch and it has always turned out to be a false alarm. I think it behooves us to be cautious after seeing so many people claim to have some new method that has never proven to be something that will really help us. We would all LOVE to find something that would cure our severe curves without having to resort to surgery, and it's hard to watch while some people (I'm not saying this is you) try to sell us things that just get our hopes up and then disappoints us. When some messages seem to have that sales pitch kind of tone, it makes us wary because of prior experiences.

megster85
07-18-2005, 02:05 PM
I don't know where you got your information from or if you are just making up your own theories but I think it's best to leave the research to the professionals. Scoliosis has nothing to do with the way you sleep or which arm you open a door with or carry your bag and I think giving people that information is misleading.


Part 2

Things like sleep patterns, sports bags, and daily physical routines must also be taken into consideration. When I was younger, I would always sleep with my body in a certain configuration. It felt comfortable this way, and incidentally, my spine developed a curve that is reminiscient of the configuration my body had when I slept. Did my sleeping pattern cause the scoliosis or did I feel more comfortable sleeping this way because I already had developed scoliosis all those years ago and didn't know it? I don't know, however in the years after I found out, I begin sleeping in the opposite configuration. One spends many hours of their lives sleeping so trying to 'correct' or brace the curve naturally this way is something I've tried. To this day I know it would be more comfortable resorting back to the previous configuration.

I also used to carry sports bags with one strap so that the weight was unequally distributed across my back. I would suggest using a normal double strapped bag. I also began working out in 8th grade, probably too young because the spine is still developing. Any mistakes or overworked back muscles that are not noticeable at that stage may be magnified over time in the form of scoliosis. The same goes for activities such as basketball where you essentially use one half of your body differently repeatedly over the other half. When you throw the basketball using proper form, you're excercising your throwing arm more than your aiming arm and this repeated action may also mean that you're developing certain back muscles more than others.

In short, compensatory behavior is recommended. If you're used to sleeping in a specific way, sleep the opposite way. If you carry your wallet in one back pocket begin carrying it in the other. If you open doors with one hand, begin to always use the other instead to open doors. We could probably learn much from people who can write and play sports using both hands by studying their muscle development.

To summarize all points made, we have to begin taking the mystery out of most idiopathic scoliosis conditions. Common sense will tell us that a curved spine is that way because of the spine or the spine muscles and most likely an interaction between the two. Therefore any corrective effort should and must effectively take into consideration both in order to find an everlasting solution. Our piece meal approach that too often focuses on one over the other, or over emphasizes ineffective solutions such as yoga, have led the medical community to an impasse and there will be no breakthrough until these lines of thinking are dramatically changed. Perhaps it will take more peole suffering from the condition to propose these different approaches because living with it gives one intimate knowledge about it. If we continue to tread the current path, you and your children (who may be prone to mild scoliosis) will continue to suffer life long discomfort and even pain without any hope for solution.

JanM
07-18-2005, 03:57 PM
I'm 53 and have 40T and 60L curves. When I was about 10 in the early 1960's, I was first diagnosed with scoliosis and at that time the doctors made me sleep on one side, put a lift in my shoes, always sit with something under one side, do my homework leaning to one side, etc. I remember doing this for years and being teased by the kids in class because I was always carrying around something to sit on. And I remember it didn't help me. I also remember they told me my scoliosis would never get worse after I stopped growing, which turned out to be very wrong. I really don't know anything about scoliosis research, but it does seems that these ideas about the muscles etc. may not be new and revolutionary.