Facing the Challenges of Scoliosis

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A Team Approach to Scoliosis Treatment Leads to Success

Upon hearing a diagnosis of scoliosis, one of the primary concerns for most parents and patients is the possibility of facing invasive surgery. Fortunately, patients with early-onset scoliosis can reasonably expect to manage their spinal curvatures with non-operative treatments. Bracing has proven to be the most successful way to slow the progression of these curves. Studies show that when bracing begins before the adolescent growth spurt there is a decreased rate of curve progression in 72% of cases  (Weinstein, 2013).

Bracing does have its challenges, though. While many of these challenges are physical, patients need support to deal with a wide range of concerns including the stress of being embarrassed about wearing the brace, worrying about participating in sports and activities and choosing stylish clothing that can be worn with the brace. Meeting these challenges requires a two-pronged approach as there must be a focused dedication by both the patient and the care team. When both sides commit to their responsibilities, as well as to prioritizing communication and collaboration, the likelihood of successfully overcoming the challenges is very high.

Since the benefits of bracing increase significantly with adherence to the prescribed wear time, and the responsibility of achieving the brace wear time falls squarely on the patient’s shoulders, the patient must be committed to the treatment protocol devised by the care team. Many scoliosis patients are adolescents who are fighting for their independence and rarely enjoy being told what to do! While some patients push back initially, most enthusiastically take on the responsibility for their spine health. Once they realize that their actions will be the greatest difference-maker in the success of bracing, they often feel empowered rather than encumbered.

“I was willing to do whatever it took to avoid [spinal fusion surgery],” says former patient Allie Kantor, who wore her brace for 22 hours a day for 18 months and then at night for an additional six months. “If you do what you’re supposed to do, it will work.”

In addition to brace wear time, the patient must be sure to wear the brace properly. The brace must be tightened to the appropriate mark. If discomfort is impeding the patient’s ability to wear the brace, then they must face the challenge of speaking up and advocating for themselves so that the issues can be addressed.

“I would encourage any patient to make a list of their concerns and present them to the orthotist,” says Rachel Mulvaney, Vice President of The Curvy Girls Scoliosis Support Foundation. “Remember, he or she is there to support you and make your experience easier, not more difficult.”

At National Scoliosis Center (NSC), the staff is committed to working with patients to create a brace with the proper and most comfortable fit possible, and to creating an atmosphere where they feel free to identify areas of discomfort. Numerous patients have expressed how much they value the orthotists at NSC and their efforts to keep them involved in the brace fitting and adjustment process. Former NSC patient Megan Miller recalls that the team consistently made sure she was an integral part of her treatment journey.

“[The orthotists] would make me feel excited about the process of making my brace,” she says. “I got to pick out the colors and patterns. [They] really listened and never rushed me.”

While receiving treatment for scoliosis, a patient will meet with numerous medical professionals to include pediatricians, orthotists, orthopedists, imaging specialists, and physical therapists. Finding the most competent medical team possible to collaborate with throughout the journey is another factor in successfully meeting the challenges of bracing. Collaboration among these professionals is another integral component in helping the patient succeed. When all members of the group understand the goals and the importance of adherence to brace wear time, then the patient will get the maximum support and will be empowered to meet the challenge.

“Fostering a team approach to the care of our patients will always increase the potential for the highest caliber of treatment,” says Luke Stikeleather, Chief Orthotist, President, and Founder of National Scoliosis Center. “A multi-disciplinary approach including coordinated care, shared accountability, and input from scientists, medical and health professionals, patients and families is imperative.”

It is also important the team has extensive experience in bracing treatment, knowledge of the various types of braces available, and an understanding of which brace will best meet the patient’s specific needs. At National Scoliosis Center, there are a few styles of braces used, but the one that has proven to be most effective is the Rigo Cheneau style brace.

Mr. Stikeleather introduced the innovative Rigo Cheneau brace to North America in 2004 while under the tutelage of Dr. Manuel Rigo. Today, with Luke as the lead, the full team of NSC orthotists offers over 20 years of experience in treating patients with this customized brace which uniquely addresses the 3D nature of scoliosis. To date, this team of orthotists has documented successful results based on the treatment of over 5,000 patients, with more than 90% of those patients successfully avoiding surgery.

Additionally, the most competent care teams provide access to resources, guidance, and additional support outside of their specific disciplines. National Scoliosis Center maintains relationships with many support groups, like Scolios-us and Curvy Girls, that help patients deal with the emotional challenges of bracing. These organizations provide patients the opportunity to share their experiences and the chance to be a part of a community. These groups offer information and encouragement for patients throughout their bracing journey. Group members can exchange personal stories of their first-hand experiences and tips to deal with the challenges of wearing a brace. Encouraging opportunities for patients to connect with current and former patients is a priority of NSC staff.

“I strongly recommend joining a local Curvy Girls Scoliosis Support Group,” says Mulvaney. “Talking with your peers and expressing your frustrations to someone who directly understands your challenges is an indescribable feeling.”

Another challenge that patients mention is fear that bracing might prevent them from continuing to be involved in sports and other activities. Fortunately, patients can fully participate in all their favorite activities – athletic or otherwise. While most can remove their brace for PE class, practices, and competitions, they still might feel self-conscious about changing out of their brace. This is another area where communication and collaboration will help overcome the challenge.

“I was nervous about changing for gym class at first,” says former patient Audrey Korhnak, “so I talked to my PE teacher and we worked out a plan so that I could come to class a few minutes early to change and leave my brace in the PE office. I found that my teachers and coaches were understanding and willing to do whatever I needed to help me feel more comfortable.”

Finding fashionable clothing to wear with the brace is another big challenge for many patients. Fortunately, there are plenty of practical and stylish ways to dress and conceal the brace. National Scoliosis Center’s website offers fashion guides that are updated periodically. These articles give fashion advice and showcase specific pieces so that teens can choose the latest trends and stylish clothing to cover their brace during their time in treatment.

The challenges of wearing a brace can be daunting for anyone, especially adolescents who are already facing a particularly stressful season of change in their lives. When patients receive consistent encouragement and observe collaboration between their parents, medical specialists, and a supportive community, then they are more apt to take ownership of their health. Accepting this responsibility and receiving this support puts them in the best position to face the challenges of bracing and to achieve a successful outcome at the end of their scoliosis treatment.