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.

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The current medical management of idiopathic scoliosis is fairly straight forward with 3: main recommendations:

~Smaller curves below 25 degrees monitor with no scoliosis treatment.

• ~Medium curves over 25 and less than 40 degrees, scoliosis brace treatment.

~Large curves over 40 degrees, multiple level scoliosis surgery.

The problem arises with parents of children who have entered the 40 degree zone when the typical orthopedic response is your child needs scoliosis surgery and many of these parents simply don’t want scoliosis surgery and feel that it is too invasive a procedure at this point. So what are the options? Is there a nonsurgical management plan for scoliosis? What are the real consequences of choosing not to do a multiple level scoliosis fusion surgery on a child with a 40 degree, 50 degree, 60 degree scoliosis?

The answer to these questions is going to be different based on the facts of the individual child’s clinical picture. If we look at options for nonsurgical management of larger curvatures we won’t find a whole lot of current literature or choices. Some of the more common but rather generic options are exercises, chiropractic, massage, and other alternative back care choices that don’t offer much in terms of addressing some of the more important aspects of larger scoliosis curvature. Many parents and children feel that addressing posture, function levels, breathing capacity, rib deformity, and pain are the major concerns with managing a larger scoliosis curvature.

The other concerns are often regarding the future health of their child. Will the scoliosis continue to progress? Are their cardiovascular or respiratory risks not just a shallower breathing pattern, but real tangible health concerns with a larger curvature? Can my daughter have children? What about sports?

As you can see there certainly is a plethora of questions facing a nonsurgical choice when it comes to scoliosis and probably why tens of thousands of scoliosis fusion surgeries are performed annually. It’s easier to swim downstream then to swim upstream especially when you have some of the most respected surgeons advising you to do the surgery.

Shedding light in regards to nonsurgical management of larger scoliosis curvature generally above 40 degrees is something that needs to be done and I hope the following information will help do this. Statistically the chances of cardiopulmonary or cardiac dysfunction that will actually affect the health of the individual with scoliosis are rare. Most experts feel that only in grossly severe curves over 100 degrees is the heart actually in danger of being affected. Pulmonary changes are more common but only occur in thoracic primary curves above 60 degrees in addition the thoracic kyphosis also must demonstrate significant losses in order for more noticeable changes in respiratory capacity to be measurable. The ability to have children both carry and deliver a baby to term without complications is often unaffected by larger scoliosis and in some reports more of a problem with multiple level spinal fusion surgeries. Most patients with a larger scoliosis remain fully functional and continue to live normal lives and other than some visual body asymmetry really are at no increased health risks.

It would be interesting to argue that there are potentially more health risks and complications with surgically treated scoliosis versus non surgically treated. Experts could argue that nonsurgical leaves you at risk for progression, pulmonary deficiencies pain whereas surgical intervention yields no improvement in pulmonary deficiencies or pain and adds functional losses in movement ability, stiffness, scarring, and host of other reported health issues. One thing surgery definitely provides is 250 billion dollars of revenue annually.

Moving forward a new nonsurgical treatment option created by a group of doctors known as CLEAR scoliosis treatment provides the best opportunity to manage a larger curvature. The main premise of CLEAR treatment is to decrease soft tissue resistance and then rehabilitate the neuromuscular system using advanced cantilever body weighting that helps the spine adapt and learn a new straighter position without creating immobility. Soft tissue adaptations that are present with larger curves involve muscle, tendons, ligaments, and discs. These tissues become more rigid and asymmetrical in larger curve formation. Advanced biomechanical equipment used produces cyclical loading and unloading combined with low frequency vibration to stimulate collagen elongation thus increasing spinal flexibility. Once the spine is unlocked where soft tissue has disengaged the neuromuscular retraining begins. A series of engineering measurements are taken to allow the doctor to create the appropriate weight leverage needed to cause the bodies neurological righting mechanism to shift the spine to a more stable balanced position when the weight is placed on the patient. This shift in spinal position used to rebalance and redistribute the bodies center of mass causes the spine to become straighter. When used repetitively for approximately 90 days follow up x-rays will demonstrate average scoliosis curve reductions between 30-50% with doctors that have clinical experience and advanced training so it is important who you choose for this type of care program.

Unlike physical therapy or chiropractic care this group of doctors are specifically trained in scoliosis bioengineering, require additional training, specific clinical equipment, and are required to take multiple exams to become eligible to provide CLEAR scoliosis treatment . So if I were a parent choosing a nonsurgical scoliosis management system I would choose these guys hands down. I would also consider for those parents who are planning on multiple level scoliosis fusion surgery to get a consultation with a CLEAR practitioner prior to undergoing surgery for scoliosis you may in fact see more benefit in a nonsurgical approach. When it comes to risks versus benefits the tide is turning in regards to nonsurgical versus surgical management for scoliosis.

“Idiopathic scoliosis” is term that has been present in recorded human history for almost 3,500 years, but the mystery of its “unknown cause” is slowly being discovered. As many experts have suspected for decades, breakthroughs in scoliosis genetic testing (Scoliscore) and the scoliosis blood test have uncovered sequences of genetic code that leave an individual “genetically pre-disposed” to the development of severe idiopathic scoliosis. However, since the condition doesn’t appear until adolescence in the vast majority of patients, the search for environmental influences that are connected to un-coordinated growth spurts is on-going.

Virtually all current idiopathic scoliosis research is pointing towards a neurological deficit/under-development in the automatic postural control centers of the brain stem as the root cause of the condition, but the factors that cause severe progression requiring scoliosis brace treatment and /or scoliosis surgery appear to be primarily environmental (bio-mechanical, bio-chemical, and specific activity related) driven.

Previous attempts in scoliosis treatment have entirely centered on treating the scoliosis spine itself and have almost entirely ignored the obvious neurological component of idiopathic scoliosis. Scoliosis brace treatment is a relatively simple minded approach to “guided growth” in which the spine is essentially forced into a straighter position (in the front view dimension only). The scoliosis spine growth mal-adapts to alter the bio-mechanical loading patterns provided by the scoliosis brace in an attempt to “out-smart” the developing pattern of the scoliosis spine. Unfortunately, this well-studied scoliosis brace treatment approach has been found very ineffective due to the inability for idiopathic scoliosis patients to comply with the 23 hour a day, 7 day a week, 365 day a year scoliosis brace treatment protocol and those whom do comply experience significant muscle atrophy (muscle weakening) and scoliosis brace dependency in which they need to be “weaned” out of the scoliosis brace over the course of weeks or months. In addition to not addressing the primary neurological cause of idiopathic scoliosis, recent research at the University of Vermont conducted on rat tails under simulated scoliosis brace conditions, suggests that scoliosis brace treatment may actually be causing permanent deformity to the scoliosis spine discs that could lead to further curve progression during adolescences or adulthood.

Scoliosis surgery is a “brute force” approach to scoliosis treatment and has under gone many advancements since its inception in 1865, but even to this day the scoliosis treatment goal remains the same…..complete multi-level spinal fusion. While most orthopedic surgeons make substantial efforts to limit the number of vertebral segments fused during scoliosis surgery, it generally includes at least 5-6 segments out of a total 24 moveable spinal vertebrae which completely immobilizes an approximately 25% portion of the patients entire spinal column. The long-terms (15-20 years post scoliosis surgery) are very poor in terms of chronic pain and quality of life measures. Dr. Robert Saulter of the Toronto Hospital for Sick Children summed up the relationship between chronic dysfunction and chronic pain with is famous quote, “Restoration of function is more important than the relief of pain”. Unfortunately for the idiopathic scoliosis patients whom undergo scoliosis surgery the chronic dysfunction (multiple level spinal fusion)will almost certainly lead to severe chronic pain at some point in their lifetime. This may be considered an acceptable trade off if the scoliosis surgery was a “life-saving” procedure, but the research conducted on the effects of scoliosis surgery has concluded the procedures is primarily indicated for cosmetic purposes and is not medically necessary. This is a generally accepted fact with in the scoliosis treatment community, because scoliosis surgery does not improve cardiac function, pulmonary function, eliminate pain, or improve the adolescent idiopathic scoliosis patient’s quality of life in the long-term follow up studies. It should be noted, that a fused scoliosis spine from scoliosis surgery is every bit (or more) dysfunctional that an un-treated scoliosis spine. Perhaps most importantly, scoliosis surgery is not and will not lead to a cure for scoliosis since it still fails to address the underlying neurological deficit/ under-development that is the root cause of idiopathic scoliosis.

The concept of re-training the automatic postural control centers of the brain stem actually dates back several hundred years (if not much further back) to a time when young girls aspiring to become debutants practiced good posture by walking around balancing books on top of their heads (which is not a suggested scoliosis treatment). By making the head (temporarily) artificially heavier with the book, they essentially changed where their body neurologically perceived the center mass of their skull and caused their “body schema” (the neurological “set point” for normal spinal posture) to react to the perceived postural change. Over time the repeated re-training of the young girl’s automatic postural control centers in her brain stem resulted in a permanent change in the “body schema” and the improved posture simply, became “the new normal”. These very same principles (in a much more effective and advanced application) can be applied to scoliosis treatment and permanently alter the natural course of the idiopathic scoliosis condition by treating the root cause of the condition. The future of scoliosis treatment will be found in treating the scoliosis spine, by treating the automatic postural control centers in the brain stem first.