By Maggie Victoria

I write this article today from my own perspective one that I hope will provide insight into the world of long term surgical complications and what motivates me, to look for a better non-surgical scoliosis treatment approach to treating Scoliosis.

Brief Overview of My Scoliosis Surgery experiences

I like most, was a young girl when I first underwent my first scoliosis fusion surgery. I was eager to have the surgery because I did not want to go through life twisted and deformed. I didn’t understand then, as a young girl the long term complications nor did anyone else for that matter .

I went through scoliosis surgery, had rods implanted, had my fusions done, in the late 80s, had a body cast, and a brace, and looked forward to getting the brace off so I could see my wonderful new and straight body. I still had the rib-hump, and the protruding scapula when I was fully recovered. I wanted this fixed more than anything but it just wasn’t possible. The surgery to us didn’t seem like such a big deal. The recovery was long and challenging but I got through it. I went on to have two more surgeries because of complications and pain. The last surgery, I ended up with a chest tube due to a collapsed lung.

Even with all that in my young years, I seemed to bounce back, and have a full and happy 20 years, post operatively. I wasn’t thrilled with the cosmetic outcomes but still it was after all much better than what I was.

All was good, I did have some lumbar and cervical discomfort but went on to marry, have two children and a pretty normal life. Scoliosis and surgery was the furthest thing from my mind as I focused on career and family. In fact, I had learned to dress the deformity and no one even knew I had scoliosis. It was never anything I ever discussed, because it really was a non-issue to me, and had very little impact on the quality of my life. I was happy successful with two beautiful children can it get much better than that?

The Degeneration and Decline Begin

About five years ago, I began to notice bouts of pain that would last only a short time in my lumbar spine. I of course conferred with my Physician who prescribed NSAIDs and after x-ray diagnosed me with a little bit of arthritis. Happily I went on my way with meds in hand and continued my demanding but happy life. The pain never seemed to go away, I tried exercise and physiotherapy and for a while it seemed to improve. Within a year, the chronic pain began to set in. To keep this article brief, I am now in severe chronic pain, my shoulder shifting forward, a kyphosis is evident and I have degeneration in the c-spine, t-spine, and the l-spine now. I won’t go into the medical terminology of the exact degeneration but I will state the degeneration is severe, and my spine stressed and unable to carry out my daily responsibilities. I am on my way to becoming permanently disabled as my I can no longer meet the needs the demands of my daily life. I greet this with regret as I have always worked and enjoyed a full and prosperous life.

My Perspective - Scoliosis Fusion Surgery

I over simplified the impact this surgery would have on my life as a young teen. Somehow at that age, being in your 30s is ancient, and something we at that age can never imagine being that old. I didn’t realize the complexity of these Scoliosis surgeries. Exactly what they do, and how bio-mechanically altering it is to the human body. I thought, as my parents, no big deal, a couple of rods, force straightened with bones taken from my hips. Fusion, we had no idea even what that was.

Since my rapid decline and my degeneration, I have since done research on the surgical procedure itself, and the methods by which the human spine is straightened and fused. You may be thinking yes, but that is the old surgical method, the new and improved methods will be better. I am a skeptic, and I say not so fast. The new surgical procedures provide for better correction but are far more invasive than my surgical approach. There are few studies on the long term outcomes for my generation that are in my opinion quantifiable and unbiased. The new procedures have much more metal, and are far more invasive. Will the complications be much higher when this generation begins to age and the wear and tear of life begins to take its toll on the spine? Right now, we won’t know that for another 20 years. Salvage surgery now is complex and even more invasive than the original surgeries. I can’t imagine what it will be like when the pedicle screws have to be removed on an aged body.

I don’t expect anyone to go through life crooked and deformed. Surgery must be considered a viable option for those who will suffer emotionally form the cosmetic deformity of scoliosis. We have no right to tell another person what is right for them. If you choose to have surgery understand that you may be trading some of your deformity for a life of chronic pain and you may end up as I fighting to hold on to any quality of life. Surgery does not have perfect outcomes.

The Better Way –– Early Stage Scoliosis Intervention

We must begin to understand just how complex these surgeries are. We must know too, that there are other options to surgery. There are now non-surgical treatments that have had success in stabilization of the scoliosis condition, and reversal. These treatments are fast becoming more and more recognized by parents of children with scoliosis. We didn’t know 20 years ago, the dangers and the downfalls of these surgeries, but we do now. Retrospectively for myself, I would have opted NOT to have surgery. I have now closed the door on any non-surgical treatment that I might have benefited by because I am fused. My only way out, is more surgery, and there are no guarantees of any improvements whatsoever.

We know better now, so we should endeavor to find a better way to treat. CLEAR Scoliosis Treatment Protocols, reversed my daughter kept her spine intact, preserved her emotional well-being and for that I am truly thankful. It is a new day, and we are turning the corner to treating this disease with an attack in early stage non-surgical scoliosis treatment. The choice is entirely yours, but for me, my experience was not one that I was willing to chance for my own daughter. It is better to try than to wait and do nothing. It can be a first class ticket to the Operating room.

If you opt. to have surgery understand that you are trading a mobile crooked spine for an inflexible fused spine that may give you long term complications. Who will have these complications, and why, is still unknown as there are not enough studies to quantify the outcomes.
The approach to me is to try everything before having scoliosis surgery. The risks to me are far too great.

I look at some of these kids that come out of the CLEAR Scoliosis Institute clinic while my daughter is being treated and I think, look at you, you are healthy, happy, and your spine, well, really, it isn’t that bad. I think to myself, that perhaps, they are better left maintaining their curves, than to end up like me. That is the treatment approach we have elected for our daughter and know what she looks absolutely fine. Surgery should be an absolute last resort and deformity must be severe enough to warrant such an invasive procedure. CLEAR treatment protocols have success and to me every success is one surgery less!

By Maggie Victoria

I am a parent of a child with scoliosis, initially diagnosed at the age of 8 with a 10 degree Thoracic scoliosis spine curvature and my daughter is an Early Stage Scoliosis Intervention success story.

Being afflicted with the disease and had three scoliosis surgery, I was aware that there is a tendency for this disease to run in families. I was diligent in watching for signs of scoliosis which is likely why we were able to identify my child’s scoliosis in its early stages.

We went to see an Orthopedist and there was little cause for concern. Of course, I was very concerned but I was assured that chances of her progression were very slim if any at all. I was assured that she would not be as I was, and that was severe. Since I had already had 3 scoliosis surgeries, with very poor long term outcomes, I was not anxious to go down that road with our child. The Orthopedist had asked us to return in one year’s time. This is referred to as what I know as the “wait and watch” phase of the scoliosis journey. We returned yearly for two more visits. Her scoliosis relatively unchanged, I began to feel at ease but remained cautious and observant.

At the age of 12, she began to have frequent headaches, and back pain. I palpated her spine, and also observed a rib hump. We returned to her physician where she was x-rayed. Her curvature, had in fact, worsened to 18 degrees t-spine, and 15 degrees L-spine, she had a rib hump, and a flattened cervical spine.

Because of my own experience, with scoliosis fusion surgery, and the chronic pain I live with now, I had begun to do research. I was well aware of the CLEAR Scoliosis treatment protocol and promised myself and my daughter that if her curve was in fact worse than we would embark upon the CLEAR Scoliosis Institute treatment protocol. Since it had been two years since she had been evaluated by the orthopedist we had to wait on the referral.

Knowing that she had gotten worse, we embarked upon a consultation at a scoliosis treatment Center that specializes in the treatment and reversal of scoliosis without surgery. The CLEAR scoliosis Institute treatment protocol has been in existence now for the last ten years, and they continue to refine their treatments, for better correction and long term sustainability.

At 18 degrees and 15 degrees, orthopedists are generally still not concerned about the curvature. It to them is no cause for concern, and generally the child is sent home for another year of nothing. I knew though, that since she had now progressed to nearly double her initial curve that we had to do something.

I know the importance of Early Stage Scoliosis Intervention. I know the importance of non-surgical approaches because of my own surgical outcomes, which I consider now, 20 years post-op a disaster. I am on the edge now of being permanently disabled.

Early Diagnosis of The Scoliosis Condition
I cannot emphasize enough the importance, of awareness of this disease. We as parents must learn to watch for signs of this disease and any postural anomalies that exist in our child. Schools do not screen, and most family doctors and pediatricians do not screen. Generally, identification of the disease is identified by a parent or someone very close to the child that notices a rib-hump. By then the disease has likely advanced into a structural scoliosis and it is very difficult to treat without scoliosis surgery. If you know about scoliosis make other parents aware.


Standard Treatment Protocol
What you can expect is that your child will be monitored 25 degrees or less on a yearly basis. A passive approach is taken. When, and if the child progresses to 30 degrees, bracing may be suggested, and when and if the child progress to above 50 degrees, surgery can be suggested to the parents as the only option.

A New Day In Non-Surgical Scoliosis Treatment

During the wait for our referral to see the Orthopedist, I had my daughter assessed and treated with CLEAR Scoliosis Treatment Protocols. Why, you may be thinking? She is after all, only at 18 degrees and 15 degrees in her curvature progression. Why would I waste my time and money in having our daughter treated so early, when he curve is barely there? There is the key. She was 10 degrees, she progressed over her childhood, to almost double and yet, she was still under the 25 degrees. Why would I have her undergo such a treatment for a mere 18 degree curvature? Well, to me, waiting until she was at surgical levels was not going to be an option. I educated myself on the CLEAR treatment protocols, I knew that time was of the essence and the success of her reversal relied on the fact that the earlier you treat the better chances for success. At the time of writing of this article, my daughter after 17 treatments at the Scoliosis Treatment Center in Toronto is now reversed back to 8 degrees t-spine. Our hope now is for complete reversal.

Would my daughter’s curves remain at the 18 and 15 degree curves, had I left her untreated? Would she have progressed to surgical levels? We will never know, why, because I as a parent am taking a pro-active approach to treating her to keep her out of surgery. We wasted no time, we intervened immediately and now we are optimistic for her and we want to share this success with you the reader.

The key to successfully treating and reversing scoliosis

1. Awareness of the scoliosis condition
2. Proper screening and Early Stage Scoliosis Intervention
3. Immediate intervention with the CLEAR non-surgical scoliosis treatment protocol
4. Tell your story of success for all to know so that their journey can be as successful as your child’s.

In closing, I would like to thank the professionals at the CLEAR Institute, and those who endeavor to treat our children with non-surgical scoliosis treatment protocols, treatments that benefit the child, emotionally, and physically without harm and without invasive, life altering scoliosis surgery.

You DO have a CHOICE now, more than EVER! Scoliosis Surgery is NEVER the only choice. It is important to do your research, talk to the other parents who chose CLEAR Scoliosis Institute Treatment, and make your choice! We did and we are overwhelmed with optimism for our daughter’s future.

Scoliosis Treatment in the 21st Century

By Dr. Josh Woggon

"Progress lies not in advancing what is, but in advancing toward what will be."
-Khalil Gibran
 
How far have we truly come in providing people living with scoliosis better treatment options than were available one hundred years ago?
 
Scoliosis has been described in cave drawings, found in Egyptian mummies, and recognized in the first written treatises composed by the earliest Western and Eastern historical physicians.  It has been reported to be the most common spinal deformity afflicting children and adults, and to double the mortality rate in those it afflicts.  Yet for all of the history and gravity behind this condition, there exists a remarkable apathy towards it in our current cultures and healthcare systems around the world.
 
In the article, "A century of spine surgery: what can patients expect?" Martha Hawes PhD (author of Scoliosis and the Human Spine) and Joe O'Brien (President of the National Scoliosis Foundation) report that, since 1950, over 12,500 research articles have been published on the topic of scoliosis.  Of these, nearly half (5,721) deal specifically with scoliosis surgery.
 
Yet, for all of their efforts, researchers have failed to demonstrate any indications that spinal fusion provides superior long-term outcomes to living with scoliosis, and have failed to prove that there is any medical reason for a patient to undergo this surgery (see the sidebar to the left).  In Pennsylvania, insurance companies have recently begun denying reimbursement for spinal fusion as a treatment for scoliosis, on the justification that it fails to demonstrate any benefit other than cosmetic improvement, and, all-too-frequently, it fails to do that.  As stated in 2001 by Caroline Goldberg, "Surgery does not cure the disease of scoliosis, but rather replaces one deformity with another."
 
Scoliosis brace treatment was first introduced as a treatment for scoliosis in the seventh century; the Milwaukee brace was developed in 1945.  The purpose of bracing has not changed significantly since its inception; prevention of progression, rather than true correction, remains the only goal.  New genetic prognostic tests which can "risk-stratify" people with scoliosis into low, medium, or high risks of progression have recently been used to determine the true effect of bracing on influencing whether or not an individual will progress to the level where surgery is recommended.  These new methods have failed to demonstrate that current bracing strategies reduce the number of individuals who are at "high-risk" for progression that eventually progress to severe levels.  Yet the approach of most scoliosis specialists, when confronted with the fact that bracing does not work, insist that the answer is to build a better brace.  At the foundation of every failure is a flawed philosophy.
 
The "front-line" of defense against scoliosis continues to be ignorance.  When a case of scoliosis is first diagnosed, standard orthopedic practice is to relentlessly subject the adolescent to a series of x-rays that serve no purpose but to monitor the progression of the disease.  In the context of any other condition - whether it is the common cold or a case of cancer - it would make no sense to wait until a disease has progressed to more severe levels before initiating treatment.  Yet, when it comes to scoliosis, it is standard practice.
 
Current methods of scoliosis screening have been condemned for their inaccuracy and false findings, yet little effort has gone into developing new methods of detecting scoliosis.  Why search for the problem when there is no solution?  As the inefficacy of bracing becomes more and more widely recognized, many surgeons have opined that there is no reason to detect scoliosis early, and no reason to intervene in the condition until the deformity has progressed to surgical levels.
 
The system that is in place does not serve the best interests of the people living with scoliosis.  It is inefficient and impersonal, applying the same treatments without regard for physical function or the personal preferences of the patient.  The only objective outcome assessment used is Cobb angle; factors such as balance, lung function, ranges of motion, and muscle strength are often left out of clinical practice, for the simple fact that bracing & surgery are not expected to improve these outcomes.
 
The CLEAR Scoliosis Institute seeks to change the current paradigm for the management of scoliosis in the United States and around the world, by introducing treatment methodologies which recognize & address factors beyond the two-dimensional measurement that is Cobb angle.  A truly effective treatment results in a global improvement in the patient's quality of life - not simply a straighter spine.  The clinical improvements noted in their patients by the dozens of CLEAR-certified doctors around the world have attracted the attention of qualified research organizations, and led to the development of an independent research initiative spearheaded by Parker University.  It is the sincere desire of CLEAR Institute that the data collected & published as a result of this initiative will force a re-thinking of the current paradigm, and encourage intelligent decisions by healthcare policymakers.  Rather than reimbursing the costs of flawed treatment methods which do not improve long-term outcomes, reimbursement will be results-driven and reward treatment strategies which can demonstrate true correction, rather than simple management, of the condition of scoliosis.

Scoliosis has been part of the recorded medical history for the last 3,500 years and our understanding of it is obviously much improved since then, but still poorly understood overall.  The newest research and understanding of the condition points to it being primarily a neuro-hormonal cause and the spinal curve (the scoliosis) is a reaction/ primary symptom.  
 
Scoliosis bracing and scoliosis surgery are based on the old philosophy that scoliosis is soley a spine disease, not primarily a neuro-hormonal condition that causes a spine disease, so their methodology is based on a "treat the spine only" mentality and this is reflected in the poor results each methodoloy displays in long-term research studies.  Essentially, scoliosis brace treatment is worthless and scoliosis surgery may be worse than doing nothing at all in many cases.
 
Here is where our scoliosis treatment system/methodology comes into the mix.  We recognize that scoliosis is primarily a neuro-hormonal condition and the spinal curve is merely a symptom of the underlying disease, which is why our program/product and message is so refreashing and unique.....and hopefully appealing and accepted.

Patients/parents are entering the scoliosis treatment process at different points and at very different levels of experience with scoliosis treatment.  The biggest difference isn't education about scoliosis or financial restraints, but rather sense of urgency.
 
The current scoliosis treatment model uniformally follows the guidelines of curves 0-25* are observed only/ no treatment; curves 25*-40* are recommended for some sort of bracing; and curves 40* and larger are recommended for scoliosis surgery, which is not medically necessary and primarily indicated for cosmetic improvement of the spinal/toso deformity.  Keep in mind that some of the long-term scoliosis surgery studies indicate failure rates as high as 40% only 17 years post op.
 
So the mother who googles "scoliosis treatment" after learning her 12 year old daughter has a mild scoliosis curvature and the ortho doctor has told her it's not big deal and we will just re-evaluate it again in 6 months has a low sense of urgency, but enough concern to go out on the internet and do some checking around for her own piece of mind.  While the mother with a 14 year old daughter with a scoliosis spine of 45* and the orthopedic surgeon is pushing her hard (usually via guild or fear) to schedule her daughter for scoliosis surgery ASAP is coming into the scoliosis treatment process with a high sense of ugency and anxiety sense of urgency.  The mother's with daughters in scoliosis braces are generally already in the process, but at their wits end, because their kid refuses to wear the brace or it isn't working, so the are left with a sense of frustration and defeat, instead of a sense of urgency.

We understand the scoliosis treatment process is confusing and frustrating.  Many consider it out-dated and techologically obselete in many ways.  We agree that we need a better way and that is the goal of creating a scoliosis exercise based treatment approach that permanently re-trains the brain to learn how to hold the scoliosis spine in a straighter position automatically.  We know it sounds too good be true to many, but some times the good things are true.  We need a better way and we hope you agree that future scoliosis treatments must make the transition towards minimally invasive, exercises for scoliosis based approachs that target the neuro-hormonal causes of the scoliosis condition and not just the scoliosis curve.

By Dr. Aatif Siddiqui DC and Dr. Clayton J. Stitzel DC

 The word scoliosis is derived from a Greek word meaning “twists and turns.”  While the most obvious characteristic of scoliosis tends to be the lateral movement of the spine, these “turns,” are often accompanied by a rotation or “twisting” in the vertebrae as well.  Together these twists and turns not only unbalance the muscles that support the spine, but also create challenges in the functioning of the ribcage, lungs, and pelvis.  Although the exercises for scoliosis patients mapped out below, it must be noted that Re-training the automatic postural control centers of the hind brain is the only way to alter the natural course of the scoliosis condition.  With that being said, these Exercises for scoliosis patients may help reduce the symptoms and pain associated with some scoliosis cases.

Exercises for scoliosis patients #1

 Rediscovering Your Balance.  Over the years, your body has developed an intricate balancing system to compensate for your spine’s curves.   We now need to relearn how to stand properly.  Start by standing with your feet hip-distance apart.  (While it’s most important to feel what’s happening in your body, the first few times you try this you may benefit from standing in front of a mirror.)   Check that your toes are all pointing straight ahead.  Allow your arms to relax by your sides.  Begin breathing, and notice if one foot is pressing deeper into the floor than the other.  Try to press evenly through both feet while you continue to breathe.  Notice if one hip is pulling out to the side and gently guide it to back to stack over its’ corresponding foot.   Feel your collarbones widening as you breathe deeper.  Bring your awareness to your head.  If it is tilting to one side, allow it to float easily at the top of your spine.  Focus your eyes on something specific directly ahead of you and breathe.

 Exercises for scoliosis patients #2

“Filling the gap”....Increasing your breathing capasity.  The rotating of the ribcage in the scoliosis patient can cause constrictions in the lungs and limit your breath capacity.   The convex  (overstretched) area of your back receives breath very easily, while the concave (more hollow) side needs your focused attention to breathe fully.  Practice moving your breath deeply into your concavity and feel your ribs stretching open.  You can do this anytime throughout your day.  It is especially effective to engage this practice while you are exercising (in whichever form of exercise you choose).   If it is difficult for you to access this point on your own, you might ask a partner to warm up their hands and place one very lightly on the most concave area of your back.  You can then breathe deeply into the heat of their palm. 

Exercises for scoliosis patients #3

 Lengthening Your Spine.  This is a very simple exercise that can be done anywhere.   Find something solid you can grab onto and pull (a dance bar, a porch railing, a sink etc.).  Grab onto the bar with your arms shoulder-distance apart and walk your feet back until your feet are directly under your hips and your spine is parallel to the floor.   Now walk your feet just one step forward and pull your hips away from the bar.  (Make sure you keep your neck in line with the spine).  Your spine will receive a wonderful, long stretch.  Stay in that stretch for at least three breaths then take a break before beginning again.    

Exercises for scoliosis patients #4

De-rotating the Spine.  Find a sturdy chair with a hard surface.  Sit sideways on the chair with the right side of your body toward the back of the chair and your feet firmly planted on the floor.   If you have a yoga block, place one between your thighs (this helps keep your knees pointed straight ahead).  Place one hand on each side of the chair back.  Press your hands down and feel yourself growing tall through the spine as you breathe in, then twist to the right as you breathe out.   Allow your ribs and head to follow.   Do this several times on the right before turning around and repeating the process to the left.  Depending on your particular scoliosis, you’ll notice it’s much “easier” to twist in one direction than the other, as your ribcage may be compromised and already turned in that direction.  Resist the temptation to under-do-it, if this was meant to be easy they wouldn’t call it work.   In fact, you’ll want to spend a few extra breaths on the more difficult side to start de-rotating your spine and coaxing your ribs back into healthier alignment.     

Exercises for scoliosis patients #5

 Strengthening Your Spine.  This exercise is aimed at properly aligning your scapulas and strengthening your spine’s postural muscles.  Lie down on your belly (preferably on a yoga mat or blanket).  Stretch your arms in front of you shoulder-width apart and turns your thumbs up.  Keeping your legs long and the tops of your feet pressed into the floor, lift your shoulders and arms up a few inches from the ground.  While you are there, encourage your shoulders to slide down away from your ears, and be sure to keep your neck in line with your spine.  Breathe there for a full minute, then rest.  

Exercises for scoliosis patients - cool down

After doing this focused work on your spine, it is a wonderful idea to end by lying comfortably, face-up on a yoga mat or carpet for up to 20 minutes with a rolled up towel at the back of your neck and at the base of your ribcage.  Be sure you’ve lined your body up as symmetrically as possible, close your eyes and breathe consciously.  This is an excellent way to re-mold your spinal discs/ligaments and allow your body the opportunity to integrate the work you’ve done.

By Maggie Victoria

As a parent when a Child is diagnosed with Scoliosis, the emotional impact can be concerning.

Understand that there are emotional impacts in a child’s ability to cope with the treatment elects for their child. In writing this, article, it is my hope that you have done your research and opted for a non-surgical scoliosis treatment approach, such as CLEAR scoliosis treatment Centers. 

Children are often diagnosed at a time in their lives when they are trying to define their “emotional self”, trying to build their identity, forming their peer groups and self-image is everything.

We as parents and treatment teams must give more merit to the emotional support of the scoliosis child and be more aware of just how it impacts, their emotional well-being.

At an age when body image, is everything, and the spine betrays the body by twisting and bending, the self-image can become distorted and self-esteem, and feelings of hopelessness can quickly change a child’s disposition from a happy going, fun loving pre-teen to a sad and disillusioned child.

It is important, although, your child may not welcome it, to keep the communication lines open, to be able to read body language, and watch for the emotional changes in your child.

You can expect a lot of tears, you can expect anger and you can expect silence from your normally talkative child. They will try to shut you and shut you down. We as parents must take the time to allow our children the time and space to come to terms with the initial diagnosis and let them have that time and space while being aware of how they are coping.

Some children at this age are very private, and they want and demand their privacy and having to remove ones shirt, to expose the spine for even an evaluation may be an emotional strain on the child. Respect the child’s privacy, and kindly ask for a gown so the child may disrobe with dignity. Ask your child in advance of examination what their wishes are, and do your best to support them.

Find a neutral forum to talk to your child and have heart to hearts. Do not try to patronize your child as they are so much smarter than we give them credit for. Start with a funny joke or general topic and slowly move in to the topic you wish to discuss. We use our long car ride to the CLEAR scoliosis treatment center to talk about all sorts of things, and it isn’t always all about scoliosis. Sometimes, it really is a good thing, to talk about other things that make them happy and discussions should never only be solely over focused on the not so pleasant topic of scoliosis. Try to never tell your child, “well you could be worse”. To them it somehow diminishes their experience in their own minds.

Respect your child’s wishes, support them, and give them space, and time to come to terms with the diagnosis and then slowing and indirectly begin dialog that will support them through their journey. Do not be dishonest with them, share as much information with them as you feel comfortable sharing. You know your child’s ability to cope so do not overwhelm them with too much information.

Since there is no cure for Scoliosis, and there is so much information, making the right treatment for your child can be overwhelming and the pressure to perform scoliosis surgery as the only treatment can leave a parent feeling lost and the child caught in the middle.

We as parents can never be quite sure that the treatment outcomes will be as we expect or hope and just how effective it will be as there is no cure for scoliosis and the so many varying professional opinions on how to treat the symptoms. My approach was to select CLEAR scoliosis treatment methods, as it was the least invasive, and did no harm, and I have come to respect the knowledge and dedication of these professionals as the endeavor to treat the scoliosis child. Expect that the child will feel overwhelmed sometimes, by the repeated visits, the constant and consistent treatment and expect there will be sad times and happy times as the child progresses through their treatment.

One of the most important things as a parent is STAY POSITIVE. Do not focus on the NEGATIVE, the DOOM and GLOOM. It is not easy but do not allow your child to sense or feel your anxiety as it will affect them as well.

Constant positive re-enforcement, that you can see your child’s progress through the CLEAR scoliosis treatment protocol will uplift them. CLEAR institute professionals are there to support their patients and utilize their input and expertise to help your child cope better. They understand and they treat these children every day. While each child is very different there are common bonds that tie, and generalizations of the emotional support that each child requires to be successful with CLEAR scoliosis treatment. It isn’t just about treating that nasty curve it is also about keeping the mind body and spirit intact and whole.

Help your child understand, that it is like anything else, that one is diagnosed with, and something that can be treated, something that can be stabilized and maintained, through their life time, and they will soon look back with appreciation for the decisions their parents made in bringing them to CLEAR scoliosis treatment. This will take years, of course, but trust me, it will come.

Your child will adjust to CLEAR scoliosis treatment, and celebrate with them their milestones, at mid-point with a special gesture, celebrate when they achieve maintenance, and are able to come back for periodic follow-up. Do not feel you have to over compensate like providing extravagant gifts, etc. but small gestures to celebrate the milestones will be memorable and further build the child parent bond and provide the path for a trusting relationship.

CLEAR Scoliosis Treatment methods have provided both my daughter and I with peace of mind, with an attitude that we can maintain her, keep her out of surgery for her best chance at a healthy productive life without chronic pain. It isn’t easy, it is hard work but with the support and dedication of the CLEAR Institute team, I am happy and confident in our decision.

A Scoliosis Patients Perspective and Experience

By Maggie Victoria

I am not a doctor, I am a scoliosis surgery victim, and I want to share and support you if you are in the same place as I once was. I have read many on-line articles that generally imply that we, scoliosis surgery patients, after about 20 years, begin to experience minor and insignificant mild back problems; oh, really, I beg to differ and the following is my perspective and experience and the journey of so many others who have no voice, who have no power and who have been silenced and gently swept under the rug. This experience of course is in contrast to those people who have not been surgically altered, diagnosed in their youth, and they seem to be living a quality of life pretty close to those who do not have scoliosis. Just know, that you are not alone in your pain, that there are so many others out there that are just like you. Understand that we as a community of post scoliosis surgery complication patients feel as you do and you are doing the right thing by reaching out because we have all been there, right where you are currently.

The most difficult part of this journey, through scoliosis pain syndrome post-op is an emotional battle of the spirit vs. the body that is failing us, in the very lonely world of post scoliosis surgical failure. The loss of control, we feel, the loss of our quality of life and the general betrayal of the scoliosis community in not allowing our voices to be heard, and the constant criticism we are subjected to, with unfounded suspicion and hostility. As you journey through your surgical pain symptoms post-op note that you are facing an uphill battle, you will fight and learn to become your own best advocate, you will know more about scoliosis and the dangers of scoliosis surgery and the scoliosis pain syndrome than you ever wanted to know. It will be a test of the human spirit but know this, we are coming together as a community of scoliosis pain syndrome survivors, and we are supportive understanding and caring. We will be heard, we will have accountability and we will survive. We will advocate that the wrongs of the past will not repeat themselves, and we will seek a better way for this new generation of scoliosis children; for the GOOD of all. Please reach out to us, on facebook, (Scoliosis – The Untold Truth) through this forum and you will be pleasantly surprised, that you are not alone, that your journey can be supported, by our community, and you will find peace in that.

The following are conditions, and details that I hope you will find helpful, to find the support you so desperately need. My motivation for this post, is simple, that no one will ever suffer, seeking the truth, being ignored by the medical community, feeling depressed, and alone. I have been there, and I will not allow our community of scoliosis surgical patients with these complications to go largely ignored and unsupported. You deserve better than that, we all deserve better than that.

Before Scoliosis Surgery

Before my  scoliosis surgery, although a long time ago, I don’t recall having any pain what so ever.

I found this to be rather puzzling, so I asked my daughter about her current scoliosis, and her pain levels, surprisingly, her response to me, was that she was actually not having any pain, and rarely had pain. I pressed her several times, and she got a little irritated because she felt I was doubting her; go figure, So, as far as pain goes prior to surgery, very little to none. She has also indicated her strong desire to be treated at CLEAR scoliosis treatment and would prefer to go through life twisted than undergo even these “more refined, uncomplicated scoliosis surgeries”

Post Scoliosis Surgery

These are my experiences, for your own complications please DEMAND diagnostics and DEMAND whatever you need to get answers. Understand, they will try to pacify you, have courage, have strength, as this is your precious life and your precious health and you must be a guardian and warrior to protect it. When my complications set it in was prescribed NSAIDs and then sent home. I failed to thrive and was told “you only have a little bit of arthritis”. Be prepared, but never allow yourself to succumb to this sort of attitude and question your very sanity! Many patients do, and they become afraid, and drift off to their worlds with no place to turn to for support, getting worse, emotionally and degenerating even further.

I support hundreds of women daily with complications post scoliosis surgery that range from months within the initial surgeries to even 20 plus years. We have come to terms our condition and we call it scoliosis surgery failure, or Scoliosis Pain Syndrome. The surgical methods range from Harrington rod placements, C&D instrumentation, Pedicle Screw instrumentation, and the newest latest and greatest surgical instrumentation methods.

The following are some of the Long Term Issues that are Possible that we define as scoliosis pain syndrome or scoliosis surgery failure and complications:

Sometime after scoliosis surgery you might notice that your shoulders and your hips become even more uneven or clothing may not fit the way it once did. The pain this causes as the rotation advances is absolutely incredible. My physiotherapist does his best to treat this and keep me comfortable but there is little else he can do.

Disk degeneration – This is another very painful issue that can cause severe back pain.in your lower back. As the degeneration continues, it can cause the disks between these vertebrae to rupture, because they become so weak. . I have read so much online that says that disk degeneration does not cause severe pain in the scoliosis surgical patient. How do they know that? Did they ask us? I beg to differ! It is absolutely debilitating.

Those who were fitted with Harrington rods face even more severe degeneration because of the sheer weight of the rods, and salvage surgery is almost inevitable for these patients. These folks are aged well into the 50s and 60s by the time salvage surgery is required and recovery is nothing short of hell with these aged bodies lumbar flatback (some General MDs are not even aware of it) and by the time the patient is diagnosed with it they are often severely deformed and surgery to fix it is even more complex and the patient has suffered emotional trauma from the many years that have elapsed to even get a diagnosis. Most often, but certainly not always, flatback is caused by eliminating the lumbar lordosis (that is where your spine curves inward and is natural). It is claimed in general that it is caused from the Harrington instrumentation methods however it is still happening in other surgical approaches. Severe, neck, and back pain will result and eventually the person has such a severe forward bend that they can only look to the ground.

Post Scoliosis surgical scoliosis pain syndrome can also cause spondylosis, This is an arthritis in the spine that can develop. The joints can become inflamed, and the cartilage that cushions the disks thin and then bone spurs or (osteophytes) develop. This condition can lead to more surgery when the disk degenerates or the curve begins to progress and this does result in the vertebrae pressing on the nerves. Let me tell you, from first-hand experience, the pain is very severe and the only way to address this is yet more surgery.

My entire cervical spine and lumbar spine has now developed osteophytes. Scoliosis surgery can put you at greater risk for spondylosiss because inflammation will likely occur in the vertebrae above and below the fusions sites because the extra load those vertebrae must carry.

Your Rods can become loose and good luck getting that diagnosed. I had a blood pool study that confirmed it, and that diagnosis is still being denied. The rods can corrode, and the metal can “leach” into the blood stream, causing all sorts of issues, including, fatigue and autoimmune responses. I battle constant fatigue and exhaustion daily.

You can also have fusion failure where the bone fails to graft together. This can compromise the instrumentation and cause huge amounts of pain and again can only be addressed through more surgery.

You can also have spinal stenosis, facet joint arthropathy, fusion degeneration, kyphosis begins to set in. All of these conditions, from scoliosis pain syndrome are nothing short of life altering. I have all of these. While my spine remains stable at 30 degree thoracic and 30 degree lumbar, I am shifting rotationally which is causing me to have kyphosis, and the rib hump continues to get worse. I am concerned that my right shoulder will become displaced and dislocated. The pain is incredible.

Currently, 19 years post my last surgery, (note I am a health 105 pounds and was once a fitness buff. I stand about 5 feet 6 inches tall and am not over weight)

Post 3 surgeries, a dextroconvex scoliosis 30 degrees centered at T8, pedicle hooks at T4, A left fixation device T2 To L1, a fixation rod on the right T6 to T9, Clercage wire between the two rods at T8, 30 degree curve in the L-spine.

My surgical Pain Sydrome Implications:

L5-S1 spondylolisthesis secondary to bilateral L5 spondylolysis

Blood pool study – loosening of the metal rods and less likely arthritis

Lumbar Spine -Facet joint arthropathy lumbar spine, stenosis, and osteophyte formation at all levels.flattening of the of lumbar lordosis, DDD

C-spine -multilevel disc space narrowing degenerative osteophyes. Facet arthropathy

Thoracic spine – currently showing degeneration, DDD

Kyhposis is now present, rotation of the ribs in progress, and the rib hump progressing, shoulder and scapula beginning to displace, forward in my sagittal positioning. Currently, I have absolutely no stability.

Final Words

What Scoliosis surgery does, is trade a deformity for dysfunction for a life time of chronic pain. If you are reading this article and are without pain, and had scoliosis surgery, count your blessings, and know that at some point in your life, it will be your reality. We need a better way. We need the scoliosis community, to open their minds, stop the censorship, allow us to have a voice, and make non-surgical scoliosis treatment specialists, who treat without surgery, become the mainstream for treatment of this condition! CLEAR scoliosis treatment is definitely, on to something and in order to refine treatment, to improve treatment, we must, in the least make people aware that it is even available as a treatment option!

I WILL NOT ALLOW THIS EXPERIENCE TO DESTROY ME, BUT I WILL BE HEARD, AND I WILL ADVOCATE FOR THE NON SURGICAL TREATMENT OF THIS DISEASE WITH PASSION, TRUTH AND DEDICATION! NO ONE SHOULD EVER HAVE TO SUFFER FROM SCOLIOSIS PAIN SYDROME BECAUSE THERE ARE NO MORE EXCUSES! WE KNOW AND ARE VERY AWARE OF THE LONG TERM IMPLICATIONS OF THESE SURGERIES ARE! NO MORE EXCUSES!

By Maggie Victoria

My daughter was diagnosed with scoliosis at the age of 8. She was stable. It was her diagnosis, that sent me to the web because I was not having her journey as mine was; a disaster. She has strongly expressed to me, that there will be no surgery, that she will not live life as I do. She said, even if she has to live twisted, she will not allow “them” to do to her what they did to me.

I came upon the CLEAR scoliosis treatment, and Schroth, and several other treatment options for her. Since there were treatments for her where she was schooled, I embarked upon a physical therapy program, and a regular chiropractor. This was my first mistake in her treatment. Understand that the generalists are not equipped to deal with scoliosis. They did nothing to help her. In fact, the treatment, largely ineffective had a very negative impact on her ability to cope with her diagnosis.

I continued to research online, and I found the CLEAR Institute, and one of their certified doctors, Clayton Stitzel DC. I found him to be very knowledgeable in the three dimensional non-surgical treatment of scoliosis. I found his passion to help, to educate, and raise awareness refreshing and motivating.

We found a CLEAR scoliosis treatment center near our home and my daughter has started treatment there. The wait and watch protocol, as suggested by the surgeon, has doubled her Cobb angle, and now she has rotation which is more difficult to treat. If only the surgeon had told us about CLEAR scoliosis treatment and recommended it to us, instead of waiting and watching while she progressed from early stages of scoliosis to a triple curve with rotation. Why are the orthopaedic doctors such a close-minded community! I am angered and frustrated, that I as a parent had to find the CLEAR Institute on my own.

She is early in her scoliosis treatment, she is doing well, her confidence levels have increased, she is standing taller and she is happy we are not sitting and waiting for it to triple.

Parents must be realistic to understand that scoliosis, like any other condition can be managed, it can be treated without surgery, (which is primarily for cosmetic reasons in adolescent idiopathic scoliosis anyway), and a child can live a very healthy normal life without surgery. Parents must also understand that nothing, not even scoliosis surgery, will always straighten the spine to that of non-scoliosis ranges.

My life has forever changed because of scoliosis surgery, cosmetically, I look like “hell” and considering that is the only reason to do surgery, we should have left it alone and I would have been better for it.

I support, counsel and share with scoliosis patients every day, who have come to me, for advice and a kind word. They suffer as I do, they are strong people, with good hearts who also share my passion, in non-surgical scoliosis treatment and the search for a better way.

My Advice to Parents

Have a sense of perspective. Adolescent Idiopathic Scoliosis is not the worst thing your child can be diagnosed with. It is not life threatening, children will not die without scoliosis surgery, their organs will not be crushed, scoliosis surgery is primarily indicated for cosmetic improvement only. Know that now, more than ever there are choices and options. Also have confidence in your ability to parent, knowing what is best for your child, because no one knows your child better than you.

Speak with other parents, join online forums, however, take what you read, remove the emotions, and weigh what you read based on your own common sense. Know that there are studies, but very few that illustrate the long term outcomes of surgery.

Do not wait and watch. There is non-surgical scoliosis treatment that can begin to attack the scoliosis and attempt to keep your child out of the operating room.

Do not be intimidated, in to making rash or rushed decisions about your child need for surgery. There is NO rush, there is time to seek out alternatives, to do your research, to get second and third opinions. Keep in mind that surgeons are paid to operate.

Understand that the best gift you can give your child is their health. Do your research, reach out, and never trust implicitly have the courage to question, to educate, and seek out non-surgical treatment. To me, these seem like common sense but when dealing with our children and diagnosis of disease it can be overwhelming.

This is my experience this is my story, and now my daughter`s journey which will not be the same as mine. Hers will be one where her body is unaltered, and we manage her condition as we would anything else. That is the greatest gift I can give her. Some day she has promised me, she will be an M.D. and she will foster change for the good of all.

Understand that there is resistance to change within the scoliosis community but we all want a better way to treat and to me, anything that will leave the body unaltered with such a severe and complicated surgery is a good day, for all of us in the scoliosis community.

We cannot control the genetic pre-disposition “cards” that our children are handed but we certainly can control and manage their health care and guard it as their best asset.

The mistakes of the past, will not repeat itself in her generation.

By Maggie Victoria

There was never any counselling post scoliosis surgery in terms of career choices that would sustain me after my surgery for my life time i.e. do not take a job where you are sitting for prolonged periods of time, do not take a job where you are stressing your spine, with heavy lifting, or a job that is highly physical.

There was never any advice on what to do, and what not to do, physically to protect my spinal health after scoliosis surgery. I was told, go have your life, return to normal activities about 18 months after surgery. That is exactly what I did, as if that was the end of my scoliosis treatment forever.

There was no discussion with us about the long term outcomes of these scoliosis surgeries, and that some point in my life I because I was now forever surgically altered would in about 20 years become physically disabled, and that I would live in chronic pain, and my spine would degenerate, from loose instrumentation, from conditions such as degenerative disc disease, spondylitis, spondylolesthesis, facet joint arthropathy, bone spur formation, disk space narrowing, nerve issues, bi-lateral pars defect, and the list goes on. All of my complications, and degeneration, still as I write this article, largely unexplained to me or even acknowledged. However, I am very aware of the degeneration and how dare they try to keep it from me!

Life after Scoliosis surgery, long term has left me fending for myself, looking for any pain relief that I can tolerate, which includes daily doses of NSAIDS, narcotic medications, and muscle relaxants. All of these of course are legal and script medications.

I pay for any health care that I get now, with weekly physiotherapy. I have “tired” at the suggestion of a surgeon massage therapy. I thought, are you kidding me, you have altered the very dynamics of my body, by brute force, alterations, with rods, fusions, and hooks and you think that message therapy is going to relieve my symptoms. I am tired of the ole, “try this and try that” in my life after scoliosis surgery. I feel that I am alone, that I am struggling, physically every day, to hold on to the career I so desperately love. I wonder, long term, how much more I can overcome in terms on the chronic pain, so I can hang on to my career. Losing my career, that I am darn good at, in my life after scoliosis surgery, will be yet another blow to my spirit and my ability to live my lifestyle and provide the very best for my family. Something that I take great pride in is my children who are amazing children, and live in constant fear that I someday will not be able to support them. My breathing is compromised and I have pleural hardening on both my lungs. I had a lung collapse in my last surgery and was awake when I was intubated.  I start laughing and breath too deep and nearly choke to death at times, with my children watching. This hurts me to the core of my being. Life after Scoliosis surgery, the promise of a wonderful quality of life, the promise, of a full and healthy life, without pain, cosmetically not much improved, in fact, obviously still deformed,  to me, now 20 years after my last surgery is the greatest betrayal to me as a human being and who is accountable for such a betrayal. The promise of the good life, well, it never happened.

Moving forward in my life after Scoliosis Surgery

I live in chronic pain and it is severe. I have ended up in emergency with muscle spasm so severe I was wishing and praying to God to let me die. I wait for hours I get ICE and then injected with tramadol, and Percocet. I respond by falling off to sleep and then I am escorted out in a wheel chair and sent home.

I have seen several “revision/salvage” scoliosis surgeons. I had one surgeon tell me, quite honestly, that he could not deal with me. I have had 3 surgeries and he was not qualified to deal with me but he would be happy to refer me to another surgeon. He offered to monitor me, for follow-up but that was the extent of what he could do for me. He was very kind, and his honesty was appreciated.

Surgeon number 2, I waited for months, I dealt with him not a resident, however, the appointment, largely a waste of time. He referred me back to physiotherapy to build core and the muscle I had spent, the last two years trying to build. Of course, this was the impossible task, he knew as well as I, that my muscles had gone into atrophy, and building them was nothing short of impossible. Every time my physiotherapist isolated those muscles with some sort of exercise, severe spasm and pain resulted.  Pain levels I never thought even possible were becoming my reality after scoliosis surgery.

Months passed, and then a year passed. I asked for a referral to yet another surgeon. Again, I dealt with the surgeon, who was rather polite, however, rather dismissive, and he felt there was nothing surgically he could do to improve my condition. Leaving his office I felt completely defeated, deflated and confused. Was this now my new reality? Was this how my life was going to be now, after my scoliosis surgery long term? Who could help me with my new reality and my new life after scoliosis surgery? I began to feel helpless and I felt trapped with no way out.

Just recently, I was seen by yet another salvage surgeon. Here is my experience. I waited for nearly a year, to get a consult with this surgeon. I waited for what seemed like hours to see this surgeon. To my surprise, after waiting for hours, I was not graced with his presence, but rather his surgical resident, who did not even introduce himself as a surgical resident. I was being assessed and evaluated by a professional who was not even yet a trained and qualified salvage surgeon. By the way, these scoliosis salvage surgeons, are more highly trained, and qualified much more then the initial scoliosis surgeons from childhood. These are now the most dangerous and most complex surgeries in the world, as the work that was done, so many years ago, must be undone, and the fusions broken, the spine reset, new instrumentation placed, and we are not 15 year olds any more. We are now mature ladies, from our 30’s to upwards of 80 years old. Our bone mass, is old, damaged, and our muscle tissue, in atrophy, and our ability to heal compromised by our age. Patients by the time they arrive in these surgeons office are depressed and feel hopeless and helpless. The surgical resident offered me, two surgeries, one on my C-spine, and one on my L-spine. There was no discussion about the rods, they are loose at the rod endings, and the pain when they shift, even marginally, is something no human being should ever have to experience. There is no pain management that will help with this sort of pain because the source of the pain is an unnatural pain, i.e. the metal in the body, and the fused spine. How can any pain management help and respond as a normal body would when we are now far from the body we were created with; well, of course it doesn’t. The surgeon finally graced me with his presence, after about 5 minutes, decided I need nerve block injections, I needed the cracks in my vertebrae sealed, and I needed further assessment to determine what surgery would be necessary. I was asked what pain was worse, what would I like surgically treated first, my c-spine or my l-spine. I thought what? The rods are driving me insane, they need to come out? I left the appointment yet, again, confused, and disheartened, knowing that I would be yet again entering into 2 more surgeries, with the outcomes unknown and perhaps would do nothing to address the pain levels I am having. These are the people I am supposed to trust to do one of the most complicated surgeries in the world, no thank you.

Months have passed now, since my last appointment. I am on a six month waiting list for nerve block medication to be injected into my vertebrae. This will do nothing to address the pain, it will mask it, and I will be unaware of it. I have decided, I will decline the nerve block, I think this is nothing short of dangerous and there are no guarantees that it will work. I am tired, of being a “lab rat” and the try this and try that, when the community at large is well aware that there is little they can do for me now however there is no one telling the truth.

I have done my research, I have found that these scoliosis surgeries are highly complex, that they alter the very biomechanics of the human body, that I have traded a mobile, flexible spine, for a fused solid mass without mobility, without flexibility and introduced metal to my body, that is loose now, that is causing me severe pain, that is likely corroded and causing an autoimmune response in my body. I have learned that my experience is not uncommon, that there are many patients who have undergone these surgeries, who live as I do in chronic pain, without a place to turn for help, or any sense of peace from the daily debilitating pain that destroys the mind body and spirit.

To try to tell your story, to the scoliosis community, starts at nothing short of a personal attack on the individual. We are met with suspicion, with hostility, and we are blamed for being negative, even when we try to tell our stories without emotion. We are censored, we are blocked, and we are told that the new scoliosis surgical procedures are so much more different than those of the past and they are doing great. The denial of our stories and our right to speak is nothing short of sad. Somehow because our scoliosis surgery was done in the past that the “new scoliosis surgical outcomes” will be so much different than ours and the ole, it won’t happen to me, attitude sets in. There are few studies on us as a community long term and how we fail to thrive or thrive long term. New surgical approaches are no different, and there are no studies available to support that the new surgical approach will allow the patient to thrive long term either. It is still scoliosis surgery, it is still spinal fusion, and it is still metal and now pedicle screws in the spine, and it seems to me that the instrumentation is even far more invasive than the original surgeries.

There is ignorance, and complete disregard for the strides we as a community have made in the non-surgical treatment of scoliosis. The resistance is completely unfounded and without an ounce of research on their part and the personal attacks begin.

I know that soon I will be unable to hang on to my career, that the degeneration will not stop, and soon I will be begging my government bodies, for disability benefit, that won’t even cover my property taxes. I know that my life will forever change and my quality of life will suffer because of the loss of my career and my lively hood. I have yet to come to terms with that. I am young to not contribute to my industry but that now will soon be taken away from me. What is to become of me? What has the orthopedic community have to say to me, and so many others like me; the ole “stay positive” and the nonsense that my attitude is everything etc. Where do I go from here? 

There are forums online for people with post scoliosis surgery flatback syndrome. Many of these groups, censor one’s emotions, as if we have no right to feel angry, we have no right to mourn the loss of our livelihood, our quality of life, we are just supposed to have these surgeries, sometimes more than one, stay positive and not that this is just another battle with the beast of scoliosis. I BEG to differ. This has nothing to do with our next battle with the disease of scoliosis. These are long term complications, from the initial surgeries, or what I deem as failed scoliosis surgery. I do not worship the orthopedic community, I understand there are limits to what they can do, but I will not accept responsibility for the outcomes of these surgeries as my next battle with scoliosis.