Something you should read before surgery

[Shaun26]

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]

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]

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/ind...cleID=59302012

http://www.ncbi.nlm.nih.gov/entrez/q...t_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]

For Shaun

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]

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]

for Shaun/cure/treatment/this forum

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]

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]

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]

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]

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]

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]

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]

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]

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]

Good to hear your story!

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!