Thank You Heidi Christian!

Governor Tina Kotek of Oregon has officially proclaimed June 2024 as National Scoliosis Awareness Month due to the incredible efforts of Heidi Christian, whose heartfelt letter to the Governor served as the catalyst for this important proclamation. Heidi’s personal journey with scoliosis is a living example of why early detection is so crucial and why further research is needed. Her dedication to raising awareness and advocating for the scoliosis community has truly made a difference. Her passion and commitment inspire us all to continue our efforts in advocacy, education, and public awareness. Thank you, Heidi, for your unwavering support and advocacy!

Read Heidi’s letter to the Governor:

Governor Tina Kotek
Oregon State Capitol
Salem OR

Dear Governor Kotek:

As a constituent and a person living with Scoliosis, I am writing to ask you to please declare June 2024 to be National Scoliosis Awareness Month in Oregon and sign the attached proclamation request.

National Scoliosis Awareness Month is observed in June to disseminate information about Scoliosis and highlight the need for education, early detection, and public awareness of the physical, emotional, and economic impact of this condition. With recent studies showing the benefits of bracing, early detection is more important than ever, as is increased public awareness.

Currently Oregon has no screening mandate for Scoliosis in public schools. I am hopeful, as you look toward improving the outlook for Oregon’s children, Governor Kotek, you will consider Scoliosis screening, too.

Scoliosis has affected my life. First diagnosed as a junior high student in 1974, I was prescribed a Milwaukee brace. My “S” curves which were stabilized, yet not corrected, held steady from the time of treatment through a routine x-ray taken in 2008. However, by 2012, those curves made a surprising progression to demand an eight-level (T9-L4) anterior and posterior fusion surgery at age 52.

This 8-hour surgery involved two procedures to lessen the Scoliosis curves and correct the twist with two twelve-inch titanium rods, fourteen pedicle screws, and a discectomy with PEEK cage placement. It required six days in OHSU Hospital, four months of convalescence at home in a TLSO brace, physical therapy, and one full year of gradual healing; it cost $180,000 in 2013 just for the surgery and hospital stay, plus more for doctor visits, radiology, medication, etc.; it meant a change in career for me, too.

By officially signing the National Scoliosis Awareness Month proclamation for Oregon, you will help highlight the need for education, early detection, and awareness of Scoliosis. The goal is for every state to officially declare, by proclamation, their observance of National Scoliosis Awareness Month during the month of June and I am hoping our State of Oregon will again join in!

Thank you for your consideration.

Sincerely,

Heidi Christian

The Official Proclamation from the State or Oregon

The post Oregon has officially proclaimed June 2024 as National Scoliosis Awareness Month first appeared on National Scoliosis Foundation.

“During a recent school screening, it was determined that your son/daughter may have a condition called scoliosis, or curvature of the spine. Please consult your physician for further information and available treatment options.”

For most parents, this news can be both alarming and confusing, especially when a child appears to be both healthy and active at the time of diagnosis. Clearly, routine spinal screenings have done much to increase the population’s awareness of scoliosis in general, but serious questions rarely arise until a parent discovers that his or her child may have the disorder.

What’s the best way to treat scoliosis?

This is the first and most obvious question parents ask following an initial diagnosis. The answer is determined by such factors as age, gender, and degree of curve and usually involves the following three options: (1) watch and wait, (2) fit the child for a rigid brace, or (3) schedule spinal surgery. Regardless of the preferred option, however, parents usually experience some feelings of guilt and fear related to their treatment of choice. For example, those who choose to watch and wait often wonder, “What if we do nothing, and then the problem gets worse?” Others, however, who opt to have a child fitted for a rigid fitted brace still worry because correction always depends on compliance: “Will my child feel too embarrassed to wear the device?” “Will it restrict my child’s motion to the point of altering personality?” “What will happen to my child’s back if he or she decides to stop wearing it?” These are serious questions, to be sure. But the final option, invasive surgery, causes parents the greatest anxiety, and rightfully so, with questions such as: “How dangerous is this surgery?” “What’s involved in my child’s post-surgical recuperation?” and “Can our family afford this investment of both time and money at this point in our lives?” Unfortunately, there are no easy answers to these questions. And regardless of professional advice, parents still worry about the choices they have made. Recently, however, a new alternative has been announced, and for countless children diagnosed with minor idiopathic scoliosis, this treatment may be the one that some parents have been waiting for.

SpineCor: An Innovative Approach to Corrective Bracing

On September 16, 1998, at an orthopedics symposium in New York City, Dr. Christine Coillard and Dr. Charles Rivard, pediatric surgeons from Sainte-Justine Hospital in Montreal, presented clinical findings on a promising, new, therapeutic approach for idiopathic scoliosis. As pediatric orthopedists, Drs. Coillard and Rivard had long concurred that bracing was the most conservative option available for children with minor scoliosis. However, they also realized the challenges presented by a child’s growth patterns as well as his or her physical and psychological need for normal mobility. Their studies were based upon these challenges, and as a result of their research, the SpineCor bracing system evolved. Together with their team of researchers from anthropology, biomechanics, and physiotherapy they seek to minimize the three dimensional deformity of scoliosis by addressing what they believe to be four important aspects of the condition, deformation of the spine, postural disorganization, muscle dysfunction, and unsynchronized growth.

What’s different about the SpineCor brace?

Primarily, the SpineCor bracing method is an adjustable, non-invasive technique that provides flexible, inconspicuous correction that continues as a child moves and grows. Unlike traditional rigid systems, the SpineCor brace consists of four major components: (1) a plastic pelvic base, (2) a cotton bolero or vest, (3) tie bands and (4) four adjustable or “dynamic” bands. Proponents of the brace, distributed by Biorthex, Inc., state that this unique combination of components is simple to use, comfortable to wear, and most importantly, effective in its results. The goal of the dynamic brace is to maintain and improve spinal deformity while re-educating the body to return to a more normal posture.

Does the SpineCor Brace work for everyone?

None of the current braces will work for everyone, and SpineCor is no exception. Biorthex states that results so far are similar to other braces for curves greater than 30 degrees and “the best results” occur with those patients who are skeletally immature with Cobb angle curvatures of less than 30 degrees. While determining the initial degree of measurement is essential to the success of the SpineCor system, the growth velocity of the curve is an even more important factor to consider when choosing the SpineCor brace. Specifically regarding such rates of growth, children experience three major growth spurts that can impact the severity of scoliosis: infantile (before age 2), juvenile (between ages 5 – 10), and adolescent (age 11 or the onset of puberty). Based upon clinical studies with children of all ages, the SpineCor system appears to provide greatest benefit to children between the juvenile and early adolescent stages, which generally occur between the ages of 6 and 11. In addition to the patient’sage, two other factors also tend to influence the success of this bracing alternative. As such, children who are either clinically obese, or girls who have already begun menstruating, would not be considered primary candidates for this type of treatment.

How can a patient get started with the SpineCor system?

Because the system is new, not all physicians are currently equipped to treat patients with the SpineCor brace, but information is readily available to qualified practitioners who routinely diagnose idiopathic scoliosis. The orthopedist may use the digital imaging system and assistant software in their office, or arrange an appointment with either an orthotist or a physical therapist to take the initial body measurements and to arrange for follow-up visits. The brace will then be fitted, and the patient is taught how to use it effectively. Generally, to achieve maximum results, the brace should be worn during the day and may be worn for up to 20 hours at a time. Therapists may offer suggestions for improved body mechanics while wearing the brace, and follow-up visits may be needed every 3 to 6 months, depending on the patient’s growth, to make the necessary adjustments to the elastic bands.

What are the expected results of using the SpineCor brace?

Data from clinical trials presented at the New York symposium in September 1998, revealed the following findings. Specifically, from August 1995 to the present, 41% of patients who met the diagnostic guidelines of skeletal immaturity with a progressive curvature of less than 30 degrees have experienced improvement using the SpineCor system. Among these patients, their curvatures were reduced by 25% to 50%. The study also indicated that another 41% of the patients showed no improvement after using the SpineCor brace, but to date, their curvatures have remained stable. Only 4% of the patients treated with the SpineCor brace noted an increase in their initially diagnosed curvatures. These results so far are very positive, however more long term “out of brace” data will be needed to conclusively show the effectiveness of SpineCor.

How can I receive more information about the SpineCor bracing system?

As with any new mode of treatment, it is always best to begin by speaking with your family physician or a referred specialist. This system shows great promise for young children with mild curvatures, and it will be considered among the available scoliosis treatment alternatives. However, you may wish to review the product information before deciding to use the SpineCor system. In order to make the most informed decisions possible, you may contact the NSF office to ask about the device, or you can contact Biorthex, Inc. directly by calling (514) 382-4800 or visit their website at www.biorthex.com.

The Pioneers of the SpinCor Brace

Dr Christine Coillard, Clinical Assistant Professor, Department of Surgery, University of Montreal, and Pediatric Orthopedic Surgeon

Dr Charles H. Rivard, Pediatric Orthopedic Surgeon and Head of the Department of Surgery at the University of Montreal

The post A New Alternative Treatment for Idiopathic Scoliosis first appeared on National Scoliosis Foundation.

As many of our readers know, the Scoliosis Research Society, the American Academy of Orthopaedic Surgeons, and over 23 states suggest or require school screening for abnormal spinal curvatures. In September of 1992, Dr. William P. Bunnell, Professor and Chairperson, Loma Linda University Medical Center, presented his paper, “Outcome of Spinal Screening” to members of the Scoliosis Research Society; his findings will also be published in an upcoming issue of Spine. Dr. Bunnell is a developer of the Scoliometer, a hand-held device used in assisting spinal screening programs across the country. What follows are excerpts from an interview that the NSF conducted with Dr. Bunnell about his study:

Q: Dr. Bunnell, would you start by giving us some background information about spinal screening as it pertains to your study?
A: The major criticism of spinal screening, as it is being practiced today, is that schools are referring too many students who do not require treatment. The primary cause of over-referral is lack of objective screening criterion; in the state of California, for example, any amount of asymmetry of the thoracic ribs or the lumbar area is an indication for referral. As a result of over-referral, many screening programs are cost ineffective. Youngsters who are referred–whether they need treatment or not–will be sent to a doctor for a medical consultation; they may have several x-rays taken; and then they’ll be asked to return to the doctor six months or a year later for another consultation. All of this adds up to skyrocketing costs.

Q: What were some of the goals you wanted to achieve by undertaking this study?
A: One of my many goals was to determine the prevalence of scoliosis–i.e., how many in the general population presently have it. Another was to use the data on prevalence in combination with previous studies to determine what is a reasonable level orcriterion for recommending referrals.

Q: What were some of your findings?
A: In our study of 1,000 physically mature high school students–in which we used the Scoliometer as the screening device–we found that only 16 out of 1,000 students (1.6%) had a clinically straight spine. Eighty percent had three or more degrees of rotation at one or more levels of the spine. We also learned that within this population, if “any degree of deformity” (i.e. one degree) is used as the criterion, then 98.4 % of students will be referred.

Q: Would you explain the criterion–the degree of deformity–that screeners currently look for, and tell us why you feel this criterion should be changed?
A: When I first started out in practice, everybody thought we should treat 20 degree curves with low profile braces. There is a direct correlation between 20 degree curve and a 5 degree Angle of Trunk Rotation (ATR), so screeners referred anybody with 5 degrees of ATR or greater, and they’re sill using 5 ATR as the criterion. Today, we know that at least 4 out of 5 kids with 20-degree idiopathic (causes unknown) curves will never get any worse. In fact, most doctors wait until a youngster with this type of curvature reaches 30 degrees before starting treatment. So it’s clear that we should be screening for these children in the 30 degree and above category.

Q: Based on the data from your study, what are some of your recommendations?
A: We know that spinal screening programs must have defined referral criteria and “treatment-eligible” degrees of scoliosis in order to judge their effectiveness. The ideal criteria will minimize both the number of referrals and the number of false-negative examinations. In view of the new prevalence data from my study and the current recommendations to wait until scoliosis approaches 30 degrees (Cobb angle) before starting brace treatment, I am recommending changing the screening referral criterion to seven degrees ATR at any level of the spine and changing the definition of false-negative (treatment-eligible curves that are missed) to 30 degrees Cobb angle for the purposes of spinal screening.

Q: If it is implemented in screening programs across the country, what will your new recommendation accomplish?
A: It will accomplish a referral rate of 3% and detect 95% of all “treatment eligible” curvatures, thus preserving an acceptably low false-negative rate and helping maintain cost effectiveness of spinal screening programs.

Q: What about youngsters whose curves are below that “treatment eligible” line–let’s say, between 20 and 25?
A: Those youngsters should be rescreened within six months or a year. Rescreening would take place at school, which would keep it a public health issue.

Q: In light of your findings, how do you now view the importance of screening for spinal deformity?
A: Screening is vitally important, but we do not want to screen out a whole bunch of people who don’t need medical attention because it’s very costly. We’re not looking for the cheapest way to screen–we’re looking for a better quality outcome for our patients.

The post Outcome of Spinal Screening first appeared on National Scoliosis Foundation.

Q: Dr. Emans, let’s begin our discussion by talking about the difference between scoliosis and idiopathic scoliosis.
A: The term “scoliosis” is used to describe a spinal deformity that is characterized by a lateral (side to side) curvature and vertebral rotation. As described, scoliosis can be caused by a birth defect, a severe accident, or neuromuscular disease such as muscular dystrophy and polio, but in 80 percent of all cases, it is “idiopathic”, it occurs for no apparent reason.

Q: Since we’re now talking about the idiopathic (cause unknown) variety, will you explain the difference between infantile, juvenile, and adolescent idiopathic scoliosis?
A: Infantile idiopathic scoliosis is extremely rare. It occurs from birth to three years of age and is found mostly in males and usually results in a left thoracic (upper spine) curve. Many infantile idiopathic curves correct themselves spontaneously without treatment but should be monitored. Juvenile idiopathic scoliosis usually occurs from about age 4 to the onset of puberty-roughly age 10 or 11 for girls, age 12 for boys. Most of these curves, which can occur both in males and females, are right thoracic curves. Adolescent idiopathic scoliosis usually occurs during early puberty, with the most rapid worsening occurring during the early adolescent growth spurt. For unknown reasons, this variety strikes females more than males-at a ratio of roughly 5 to l. The most common curve pattern among adolescents is right thoracic.

Q: Most of our readers are generally familiar with the kinds of treatment available for adolescent idiopathic scoliosis-i.e., rigid bracing until bone maturity, or spinal fusion surgery, depending on the severity of the curve. Is treatment different for those who have infantile or juvenile scoliosis?
A: On the rare occasions when we do see a child with infantile idiopathic scoliosis that requires treatment, we might consider rigid bracing or fusion without instrumentation. Of course, our, choice would depend on the severity of the child’s curve. For juveniles whose cases warrant it, we would select from any number of surgical techniques available today. For juveniles, the threshold for bracing is lower than that for adolescents. We are more likely to brace a 7-year-old with a 20-degree curve because of the high likelihood of worsening of the curve with remaining growth. For the sake of comparison, we would not brace the 20-degree curve of the 14-year-old or 15-year-old who has little growth left.

Q: What is kyphosis?
A: Before answering that question, let’s talk about the normal spine for a moment. When you look at a person with a normal spine, viewing him or her from the side, you see that the back is anything but straight. In the cervical (neck) area, the spine curves slightly forward (a lordosis), then slopes gently backward (a kyphosis) through the chest area, then forward again in the lumbar (lower back) area toward the sacrum (tailbone). In other words, everyone has some kyphosis of the spine (and some lordosis). Normal thoracic kyphosis will be centered in the chest area and range in size from 20 to 45 degrees. An abnormal kyphosis may exceed 45 degrees or may be centered at the thoraco-lumbar (mid- spine) area. Often there is wedging of the vertebra on x-ray in an abnormal kyphosis. “Scheuermann’s kyphosis” is a generally progressive abnormal kyphosis, which occurs most frequently in adolescent males.

Q: How is abnormal kyphosis treated?
A: Most abnormal thoracic kyphosis in growing individuals of less than 70 to 75 degrees can be successfully treated with rigid bracing. Often a Milwaukee type brace is needed. Unlike bracing in idiopathic scoliosis, the brace treatment of Scheuermann’s kyphosis can often result in actual correction.

Q: What is kypho-scoliosis?
A: Most idiopathic scoliosis in the thoracic spine is “lordo-scoliosis” or “hypo-kypho-scoliosis” (less than the normal kyphosis). There is usually a flattening of the normal thoracic kyphosis associated with idiopathic thoracic scoliosis. The old outmoded term for scoliosis in general was “kypho-scoliosis.” This term was employed before physicians realized the three dimensional nature of most scoliotic deformities. There is also true kypho-scoliosis in which the spine is de- formed both in the direction of scoliosis and kyphosis. It is treated in the same way as idiopathic scoliosis.

Q: What are congenital scoliosis and kyphosis?
A: Congenital scoliosis and kyphosis are caused by birth defects in the spine itself. Abnormally formed vertebra produce the spinal deformity. Both congenital kyphosis and scoliosis can worsen drastically during the first few years of growth and often need extremely early surgical treatment. Bracing is rarely used for either type of congenital curve. Some individuals with congenital curves experience no worsening of the curve with growth and need no treatment.

The post Let’s Get The Terms Straight first appeared on National Scoliosis Foundation.

Q: Dr. Moskovich, would you give us a brief overview of early onset scoliosis?
A: It’s important to know that early onset scoliosis is idiopathic, which means we do not know what causes it. Early onset scoliosis occurs before the age of five, and occurs more often in boys than in girls, though we don’t know why. It was formerly referred to as ‘infantile scoliosis’, a term some people still use. It also must be stressed that early onset scoliosis is a very rare condition: the incidence of it is only 1 or 2 per 10,000 people. The vast majority of cases improve spontaneously, which means even fewer need to be treated.

Q: Is early onset scoliosis the same as congenital scoliosis?
A: Not at all. Whereas congenital scoliosis involves a curvature caused by an abnormality such as a hemivertebra or other bone structure problem, early onset scoliosis stems from no known cause-as we’ve said, it’s idiopathic. There is no obvious abnormality in the development of the vertebrae that we can identify in patients who have early onset scoliosis.

Q: How severe must a child’s curvature be before you would define it as an early onset scoliosis?
A: If a child under the age of five has a 10 to 15 degree curve or greater, we would say that child had early onset scoliosis.

Q: Once you’ve identified that the child’s curve is 10 degrees or more, what steps do you take?
A: Of course we would watch the curve closely; we’d also take an x-ray which would alert us to signs of an increased risk of progression. For example, we’d look for a larger curve or marked asymmetry of the ribs, both of which can be signs that a curve may progress. The x-ray could provide us other valuable information as well: whether the child had structural problems indicative of congenital scoliosis, or whether the child had abnormalities of the heart, kidneys, or hips, all of which are more common with early onset scoliosis.

Q: Are any special tests required apart from x-rays?
A: It is important to confirm that the patient is neurologically normal. Examination of the abdominal and plantar reflexes which may alert a physician to subtle neurologic abnormalities should not be neglected. In certain cases, a magnetic resonance imaging (MRI) may be used to evaluate the spinal cord and to exclude neurologic anomalies at the base of the skull if there is any suggestion of neurological problem.

Q: At what point do you begin treatment?
A: If a curve progresses beyond 15 to 20 degrees, we would treat the child by using a plaster cast to keep the curvature from progressing.

Q: Why plaster instead of plastic?
A: There are several reasons of that choice. it can be awfully difficult to keep a young child in a plastic brace which has to be put on and taken off each day. Also, plaster casts are actually more comfortable-they create less pressure on the body because they’re molded to the body. And because plaster casts are generally easier to deal with, we find we get better correction with them. The plaster cast will be changed every 3 to 4 months depending on the growth rate of the child. Plastic bracing is used once initial correction has been achieved or may be used from the outset on larger children.

Q: How successful is plaster casting?
A: Very-about 90-plus percent of patients get better due to casting.

Q: If the curve continues to progress despite the plaster cast, what other treatment options are available?
A: If a curve progresses, we’d do surgery involving an anterior and a posterior fusion.

Q: Why would you have to do two fusions?
A: If you only do a posterior fusion, two things happen: first, it may not fuse, because the back of the spine is the ‘tension’ side of the spine, and bone under tension tends not to heal very well. Second, the front of spine will continue to grow and will twist out, causing the spine to bend backwards into a lordosis.

Q: When surgery is necessary, is it important to fuse patients at the earliest age possible?
A: In many cases, we would try to delay surgery until the child had reached a reasonable size, say at the age of 10, but sometimes that’s not possible, and early surgical treatment is necessary. Also, it is well known that by the age of two, children have reached almost half of their adult spinal growth size. It’s better to have a relatively short, straight spine than a longer, crooked spine.

Q: When a curve is left untreated, what can happen?
A: An untreated curvature can progress rapidly-as much as 40 degrees or more in just months. As the curve progresses, the size of the actual chest cavity can diminish, affecting the developing lungs, which can create respiratory problems for the child that will persist throughout life.

Q: You mentioned earlier that early onset scoliosis is idiopathic-but do you have any thoughts about what might cause this condition?
A: Besides possible heritable factors, there may be an environment trigger. We’re not really sure why, but in low socioeconomic groups in England there’s a greater prevalence of this type of scoliosis, which may be due to post-natal positioning-the way that babies are positioned in their cribs. In England, mothers are taught to lay babies down on their sides. This can cause the spine to sag, and can cause molding of the head and an increased incidence of dislocation of the hip. By contrast, here in North American we tend to put babies down in a prone (face-down) or supine (face-up) position, which results in much more even pressure on the spine.

Q: Based on this knowledge, what do you recommend?
A: In my own practice, I recommend that swaddling babies so that they can’t move and putting babies persistently on one side should be avoided. However, infant positioning should be individualized and one should consult their pediatrician.

Q: Any other advice?
A: If there’s a family history of scoliosis, make sure the family pediatrician carefully examines the child: check for asymmetries. As with all types of idiopathic scoliosis, early detection and early treatment are imperative.

The post Early Onset Scoliosis first appeared on National Scoliosis Foundation.