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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

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A new ‘train track’ implant is being trialled by doctors with the aim of transforming treatment for thousands of patients with a severe spinal condition.

Researchers at University Hospital Southampton NHS Foundation Trust have created the MESA Rail to treat scoliosis.

The condition, which causes the spine to twist and curve, can strike people of any age but most often affects teenagers.

Current treatment, known as the Universal Spine System (USS) – a method of performing anterior scoliosis correction surgery, involves placing two circular metal rods either side of the spine which are screwed in.

But the MESA Rail, which fits in a similar fashion to the way in which a train slots into railway tracks, can be fitted more rigidly to the spine because it uses smaller screws.

Researchers at University Hospital Southampton NHS Foundation Trust have created the MESA Rail to treat scoliosis

Evan Davies, a consultant spinal surgeon at the NHS trust who developed the device, believes it could potentially create better correction.

In the world’s first trial of MESA Rail, Mr Davies and colleagues will compare it against ASC, which is cheaper, to see if it is more effective.

Although the MESA Rail is more costly, if it can reduce the need for further surgery, Mr Davies believes it could save the NHS money in the long-term

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The Straight Truth About Scoliosis

For decades, virtually every schoolchild in America has passed through the same nurse’s office ritual.

The child leans forward at the waist, and the nurse looks for a bulge in the child’s rib cage that indicates their spine is bent to one side.

They’re looking for scoliosis, a curvature of the spine. They’re screening for the illness in school-age children partly because that’s when their growing bones reveal the condition.

Critically, though, that’s also when scoliosis can be stopped from progressing to the point where surgery is necessary. Though scoliosis does not shorten one’s life, it can be painful and affect children’s emotional well-being.

One study of teen scoliosis patients found they were concerned about their relations with peers and abnormal development and had more frequent suicidal thoughts.

But if scoliosis is spotted early, these mental and physical problems can be lessened or sidestepped. Effective, non-surgical treatments like orthopedic braces can realign the spine.

In addition to their expertise at treating scoliosis, Florida Hospital for Children’s physicians know teens can be concerned about their appearance. That’s why we pay attention to our patients’ emotional and spiritual well-being — we’re caring for kids, not spines.

What causes scoliosis?

Affecting about three percent of children under the age of 16, scoliosis is the most common spine condition in young people.

Most cases are what doctors call “idiopathic,” which means they don’t know what the cause is. In other words, parents can’t blame themselves if their child has scoliosis — there is no known way to prevent the illness.

However, there does appear to be a genetic component; if a child has scoliosis, his or her siblings are more likely to have it, too.

A relatively small number of cases develop in the womb and are sometimes discovered during a routine ultrasound. This type of scoliosis is likelier to progress and is more often treated with surgery.

Spotting scoliosis

Parents don’t have to wait for the nurse to screen their child for scoliosis, which typically becomes evident between the ages of 10 and 15. Common signs include uneven shoulders, waist or hip as well as a shoulder blade that sticks out.

The condition is often spotted in the summer, when kids are playing outside with their shirts off.

But one thing parents don’t have to worry about is scoliosis caused by an overweight backpack. Though overloaded backpacks can lead to muscle strain, they do not cause scoliosis, says  Raymund Woo, MD, pediatric orthopedic surgeon at Florida Hospital for Children. Nor will good posture in childhood prevent scoliosis.

Though scoliosis in children and teens is rarely painful, it can cause young people to become self-conscious about their appearance. We know that taking these mental and emotional concerns seriously is part of treating scoliosis.

What can I expect?

First, a specialist will take X-rays of your child’s spine to measure the angle of the curve. This is called the “Cobb angle,” and it’s an important way to describe how severe the scoliosis is, and how likely it is to get worse.

If the curvature is mild, it is often monitored closely — the wait-and-see approach. That’s because most cases of scoliosis don’t get worse over time.

Though scoliosis forms at the same rate in girls and boys, girls are at much higher risk of the curve becoming severe enough to require treatment.

In cases where the spine needs to be directed to develop in a more normal position, a brace is used. But to work properly, a brace has to be applied early, which is a major reason why early detection is so important.

Finally, surgery is needed for curves that appear likely to persist into adulthood. It is an effective treatment, but we know that doesn’t mean it’s not stressful for both child and parent alike.

Our team can guide families through the mental side effects of scoliosis alongside the physical treatments. Kids worry about fitting in, parents worry about their child’s future and we’re experts at bringing peace of mind to both.

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Scoliosis is a condition in which the spine is bent unnaturally, and the curvature often tends to worsen as a person grows. Niki Waters of Booneville, underwent spinal fusion surgery to correct her scoliosis when she was just 14 years old, an experience that has inspired her to promote scoliosis awareness as much as she possibly can.

She was recently able to spread her message further when she was named first runner-up in the Miss UAFS Scholarship Pageant where she presented her platform Bent But Not Broken: Scoliosis Awareness.

Waters explained that everyone struggles with different issues, but knowing that someone else in the world also struggles with the same issue as oneself can inspire one to strive toward becoming an inspiration for those with whom they empathize.

“My scoliosis surgery changed me and my life for the better,” Waters said. “My back is now straight, and I have very few physical restrictions. I want others to understand it’s okay to be different.”

Waters wants to spread Scoliosis Awareness, because though most schools do yearly exams for scoliosis, many still do not.

“A tool that is used to establish a baseline for scoliosis is a scoliometer,” Waters said. “The meter is used to determine if a curve is present and if a referral to a doctor is necessary. […] I feel an open dialogue of scoliosis awareness and the need for scoliometers would benefit many young people in our country. Early detection of scoliosis could lead to a healthier lifestyle.”

Waters has worked toward advancing her platforming outside her participation in the pageant because it means so much to her. She has developed presentations and created and distributed brochures for those interested in knowing more about scoliosis and its treatments.

She has presented to various civic organizations and school boards and collected t-shirts to alter into what she calls “scolio-Ts” to give to patients at Arkansas Children’s Hospital who have undergone spinal fusion surgery. She is also using social media in her ongoing efforts to promote scoliosis awareness.

“According to the National Scoliosis Foundation,” Waters explained, “the primary age for onset is 10 to 15 years of age. Even though girls and boys are equally diagnosed with scoliosis, girls are eight times more likely to progress to a curve large enough to require surgery.”

According to Waters’ research, three out of 100 people in the United States have some form of scoliosis, though for many it is not much of a problem.

“My goal is to educate and encourage others by sharing my personal story and experience, letting them know they are not alone in the journey of living with scoliosis,” Waters said. “By continuing to promote my platform […], together we can learn that just because you may be bent, [that] does not mean you are broken.”

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GREENFIELD — For the past year, some Greenfield senior citizens have been sewing, stuffing and stitching teddy bears for ill children at Shriners Hospitals for Children in Springfield.

The effort was part of GVNA Adult Day Health Services’ community service project. Several dozen seniors, patients at the 489 Bernardston Road health care center, made 108 teddy bears, in addition to 10 tied fleece blankets, to send to the hospital.

A few students from Franklin County Technical School also helped with the project.

“This is awesome. I can’t thank you enough,” said Anthony J. Leroux, a member of the Shriners, a fraternal organization attached to the Freemasons.

Leroux and Donald Carberry, a director at the hospital, arrived at GVNA on Friday to receive the teddy bears and blankets, and to personally thank the seniors that made them.

“Faith, hope and charity, that’s what we stand for,” said Leroux, explaining that the Springfield hospital was the second of 22 Shriners’ children’s hospitals built around the world.

Carberry also pointed out that Shriners is run largely through donations, and support from public groups like that at GVNA is crucial. Roughly 19,000 children will be treated for conditions like scoliosis, cleft palates and chest wall deformities at the Springfield hospital this year, Carberry said.

“The gifts we receive, it lets the kids take something fun physically home with them from the hospital,” Carberry said.

According to GVNA Activity Coordinator Julie Clark, the seniors themselves chose the Shriners hospital as the recipient of their charity. They also chose to give teddy bears to the hospital last year, the first year of the GVNA community service project.

“I went to Shriners hospital in 2007 for scoliosis, myself,” Clark said.

Clark added that while the program allowed the group to do something special for children in need, it also taught them the valuable skills of sewing and knitting, fun things the seniors will be able to do in their spare time.

“When I started five years ago, a bunch of you wanted to learn to sew,” Clark said to the crowd. “Last year, we made 108 teddy bears, and this year we just made another 108.”

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 – Leigha Boatwright is back to following her dreams after a local doctor successfully performed a surgery to fix the 12-year-old’s scoliosis that others said was too difficult.

Alecia Coleman, Leigha’s mother, says she started noticing a difference in her daughter’s posture, and her ability to stand up straight.

“We were worried about her having health issues and health concerns, as well as having physical issues that may have affected her confidence as a pre-teen or a teenage girl,” Coleman said.

Dr. David Siambanes says Leigha’s issues with her spine were the result of a rapid growth spurt. It happened so quickly that there was no time to use a brace or other conservative remedies.

“She ended up with a very severe curve, of severe magnitude,” Dr. Siambanes said. “And a very stiff curve, you can tell it’s very stiff because we do side-bending x-rays where you can tell the flexibility of the spine.”

To correct it, he says flexibility was needed. He used a scope to release the disks between the bone to help the curve. Then, an incision was made on the back of the spine.

“The best thing about these procedures is it stops the progression of that deformity, it stops it from getting worse,” Dr. Siambanes explained. “Her spine is nearly straight. She’ll have no difference in back pain, or impairments or restrictions or anything that any other child her age will have, that we can tell. So it really has changed her future.”

Leigha wears a bone stimulator every day to fuse the bones together and help promote them to grow straight with the rods.

According to the National Institutes of Health, Adolescent Idiopathic Scoliosis affects an estimated two to three percent of children in the U.S., but the severe curve of Leigha’s spine, Dr. Siambanes said, is even more rare.

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On the fifth year anniversary of his scoliosis surgery, Travis and his family reflect on their experience after they received devastating news. 

At a young age, North Tonawanda-native Travis Barke was diagnosed with scoliosis during a routine physician with his family doctor. By the time he was 20 years old, surgery became essential, as his spine had curved to a dramatic 58-degree angle, puttinghis powerlifting career to a stop. In December 2012, Travis underwent an eight-hour spinal surgery with Dr. Christopher Hamill at Buffalo General Medical Center. The procedure consisted of inserting two rods and 17 screws into his back to straighten his spine. 

Post-surgery, Travis’s doctors and physical therapist recommended that change his career from powerlifting to a low-impact, desk job. Although Travis was devastated, he was determined to find a way to get back to the gym and powerlifting.

A year after his surgery, Dr. Hamill gave Travis the green light to slowly return to his former lifestyle. He headed back to gym, unsure of how much his body could handle. He started by lifting just 45 pounds, but after several years of training, Travis now liftsover 500 pounds and regularly competes in lifting competitions. Before surgery, his record was 315 pounds. He credits the additional 185 pounds to his mental endurance.

Travis has since won three first place competitions by the United States Powerlifting Association, and completed his certification as a certified personal trainer from NCCC, helping others achieve their fitness goals. 

He now lives a pain free life, and is a prime example of how a dedicated and determined person can work alongside their medical team to safely achieve their dreams. 

 

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Thirteen-year-old Tamsin Clark has a lot on her plate.

She is a seventh-grader at Fowler School where she plays goalie for the soccer team. She plays clarinet, hangs out with friends, does homework, and, as if that weren’t enough, she spends several hours a week doing physical therapy to help strengthen her back.

When Tamsin was 11, she was diagnosed with scoliosis and is currently undergoing treatment at Emerson Hospital, where she was recently featured in the hospital’s marketing magazine.

Tamsin was diagnosed by her pediatrician and referred to a specialist. Scoliosis is a sideways curvature of the spine that typically occurs just before puberty, and about two years after her diagnosis, Tamsin’s curve had progressed to the point that a brace was necessary. Amy Gay, Tamsin’s mother, said the doctor told them there was little chance of improving the curve and a 30 percent chance it would get worse, which could mean back surgery for Tamsin.

Gay didn’t like those odds. Sciolisis most often occurs in girls who are tall and thin, which describes Tamsin. In addition, Gay’s mother-in-law, Tamsin’s grandmother, was diagnosed with scoliosis when it was too late for treatment. Left untreated, scoliosis can result in compromised cardiac and pulmonary function, said Gay.

″[Tamsin] had every risk factor,” said Gay, “and I wanted something more.”

Gay began researching other therapies, but it wasn’t until Tamsin broke her arm and they met Dr. John Cahoy, a pediatric orthopedic surgeon at Emerson Hospital that things began to turn in their favor.

Cahoy introduced them to the Schroth Method for scholiosis, which, while not widely accepted in the United States, has been successful for two decades in Europe. Cahoy told them he believed the new treatment could actually reverse the curvature.

Tamsin was fitted with a special brace, which she wears for more than 20 hours a day. She also does several hours of physical therapy every week to strengthen the muscles around her spine. In just a few months, her curve has decreased.

Tamsin takes it all in stride – even to wearing the brace outside her clothes, rather than trying to hide it.

“It’s just a hassle to wear it inside,” she said. “When people wear it on the inside they are afraid that people are going to judge them, but I don’t really care what people think.”

At first, she said, some people stared or looked away. Now, they are used to it. If people ask, she is pretty open to explaining why she wears it.

“Everyone is pretty accepting about it; they don’t really judge,” Tamsin said.

Tamsin will have to wear the brace until she stops growing, which she expects could be up to three years.

“Only about 3 percent of the population has scoliosis,” said Gay, “and only about 1 percent is braced.”

Emerson has established the first integrated scoliosis program in the region. The program provides oversight by a pediatric orthopedic surgeon, physical therapy with someone certified in the Schroth Method and an experienced orthotist who fits patients with a brace. All three doctors see patients in the same building in Westford.

Tamsin also attends a local chapter of Curvy Girls, a peer support group for teens diagnosed with scoliosis.

“I just like having someone who understands what I’m going through,” said Tamsin. “I have some pretty supportive friends but none of them really understand what it’s like.”

Gay is proud of the way her daughter is handling the diagnosis.

“It’s hard when you’re a kid to be diagnosed with anything,” she said. “It’s hard being a kid and hard being 13, and then having any challenge that is so physical. So on the one hand she makes it look really easy, but on the other hand it’s not easy.”

For information visit emersonhospital.org/scoliosis. For information about Curvy Girls visit curvygirlsscoliosis.com.

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A new study published in the Journal of Bone and Joint Surgery examines how readmissions increase the total cost of care for spinal deformity surgery.

 

The study authors examined records from 659 patients who underwent adult spinal deformity surgery at a single center from 2005 to 2013. The costs are expressed in 2010 dollars. Study authors found:

1. The readmission rates were 24 percent overall, and cost around $10.1 million for the population studied.

2. Around 8.8 percent of the admissions occurred within the first 30 days after surgery, accounting for $3.2 million, and 11.7 percent of the readmissions occurred within the first 90 days, accounting for $4.6 million.

3. Pseudarthrosis was the most expensive readmission, costing around $92,755; infections and kyphosis were also expensive readmissions, costing around $75,172 and $66,713 respectively. As a result, the complications increased the average readmission cost by:

• Pseudarthrosis: 105 percent
• Infection: 72 percent
• Proximal junctional kyphosis: 63 percent

These three complications represented 73 percent of the costs for readmission.

4. Two years after surgery, the average readmission cost was $86,081.

5. The factors associated with increased risk for readmission include:

• Older age
• Eight or more levels fused
• Longer length of index stay at the hospital

6. The researchers reported patients who underwent thoracic only curve or double curve procedures and those who had an anterior-only or posterior-only approach were associated with lower costs.

“Although reducing the 30-day and 90-day readmission rates and costs are important, adult spinal deformity surgery is unique, because the most common and most expensive complications occur after one year,” concluded the study authors.

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Authors Luhmann SJ, McAughey EM, Ackerman SJ, Bumpass DB, McCarthy RE

Received 3 October 2017

Accepted for publication 9 January 2018

Published 16 March 2018 Volume 2018:10 Pages 179—187

DOI https://doi.org/10.2147/CEOR.S152892

Checked for plagiarism Yes

Review by Single-blind

Peer reviewers approved by Dr Cristina Weinberg

Peer reviewer comments 2

Editor who approved publication: Professor Giorgio Lorenzo Colombo

Scott J Luhmann,1–3 Eoin M McAughey,4 Stacey J Ackerman,5 David B Bumpass,6 Richard E McCarthy6

1Department of Orthopaedic Surgery, Washington University School of Medicine, St. Louis, MO, USA; 2Department of Orthopaedic Surgery, St. Louis Shriners Hospital, St. Louis, MO, USA; 3Department of Orthopaedic Surgery, St. Louis Children’s Hospital, St. Louis, MO, USA; 4Covance Market Access Services Inc., London, UK; 5Covance Market Access Services Inc., San Diego, CA, USA; 6Department of Orthopaedic Surgery, University of Arkansas for Medical Sciences, Little Rock, AR, USA

Purpose: Treating early-onset scoliosis (EOS) with traditional growing rods (TGR) is effective but requires periodic surgical lengthening, risking complications. Alternatives include magnetically controlled growing rods (MCGR) that lengthen noninvasively and the growth guidance system (GGS), which obviate the need for active, distractive lengthenings. Previous studies have reported promising clinical effectiveness for GGS; however the direct medical costs of GGS compared to TGR and MCGR have not yet been explored.
Methods: To estimate the cost of GGS compared with MCGR and TGR for EOS an economic model was developed from the perspective of a US integrated health care delivery system. Using dual-rod constructs, the model estimated the cumulative costs associated with initial implantation, rod lengthenings (TGR, MCGR), revisions due to device failure, surgical-site infections, device exchange, and final spinal fusion over a 6-year episode of care. Model parameters were from peer-reviewed, published literature. Medicare payments were used as a proxy for provider costs. Costs (2016 US$) were discounted 3% annually.
Results: Over a 6-year episode of care, GGS was associated with fewer invasive surgeries per patient than TGR (GGS: 3.4; TGR: 14.4) and lower cumulative costs than MCGR and TGR, saving $25,226 vs TGR. Sensitivity analyses showed that results were sensitive to changes in construct costs, rod breakage rates, months between lengthenings, and TGR lengthening setting of care.
Conclusion: Within the model, GGS resulted in fewer invasive surgeries and deep surgical site infections than TGR, and lower cumulative costs per patient than both MCGR and TGR, over a 6-year episode of care. The analysis did not account for family disruption, pain, psychological distress, or compromised health-related quality of life associated with invasive TGR lengthenings, nor for potential patient anxiety surrounding the frequent MCGR lengthenings. Further analyses focusing strictly on current generation technologies should be considered for future research.

Keywords:
 early-onset scoliosis, cost analysis, growth guidance system, magnetically controlled growing rod, traditional growing rod

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