The following is a list of resources for people with scoliosis spinal fusions to find information and research, build community, and move well with others who have also experienced scoliosis surgery. This list also includes resources for families and practitioners.
Support Groups:
Samamkaya Yoga Back Care & Scoliosis Collective is a therapeutic, worker-owned yoga studio. It aims to make yoga accessible and healing to students of all ages and abilities who are living with back injuries, chronic/acute pain, differently shaped spines/bodies, scoliosis and spinal fusions. Samamkaya Yoga offers a monthly online Fusion Support Group that is free of charge on Thursdays 4:30-5:30pm EST (GMT-05:00).
Curvy Girls is a network of peer-led support groups that reduce the emotional impact of scoliosis by empowering girls through education, mutual support and acceptance to become leaders, make healthy lifestyle choices, improve self-esteem while giving back to the Curvy Girls community. Curvy Girls is a kids group run by kids. The groups discuss concerns like how to tell other kids about their scoliosis and how to talk to doctors about how they feel. The participants give each other clothing tips and talk about regular stuff that teenagers talk about.
Physical Therapy:
Physical therapists in the United States receive little to no training in physical therapy school on scoliosis. Scoliosis spinal fusion surgery addresses the spine (and sometimes ribs) but doesn’t address the scoliosis patterning that still remains in the other systems such as the nervous system, muscular system, and viscera (organs). It’s really important to find a physical therapist that understands both scoliosis and multiple segment fusions while also approaching the work as a collaboration with you.. Currently, my best suggestion is to find a Schroth therapist certified at the C2 level.
BSPTS Schroth- Based Method is a form of Physiotherapy Scoliosis Specific Exercises (PSSE). An exercise type must meet the following requirements in order to be an accepted PSSE: autocorrection in 3D, training in activities of daily living, stabilization in corrected position, education. The website includes a physical therapist directory by country and state.
Scoliosis and Spine Online Learning Center is also a form of Physiotherapy Scoliosis Specific Exercises (PSSE). This website includes a directory by country and state for Schroth physical therapist that completed its training program.
Small Group Movement Classes/Workshops:
Samamkaya Yoga Back Care & Scoliosis Collective is a therapeutic, worker-owned yoga studio. It aims to make yoga accessible and healing to students of all ages and abilities who are living with back injuries, chronic/acute pain, differently shaped spines/bodies, scoliosis and spinal fusions. Samamkaya Yoga offers workshops as well as a weekly online Yoga for People with Spinal Fusions class.
Wellness In Motion LLC offers resources and community for people with spinal fusions, parents, and practitioners. Wellness In Motion founder, Jen Gorman, is a spinal fusion patient, advocate, and practitioner offering online group classes in Pilates and yoga for people with spinal fusions. She teaches with a strong emphasis on anatomy, dynamic alignment, research, and joy. Wellness In Motion aims to inspire health and happiness!
Twisted Outreach Project (TOPs) is a Vancouver, Canada-based resource center that provides a range of holistic and creative approaches to working with back care and scoliosis. TOPs connects patients, parents, practitioners, teachers and researchers, enabling them to share personalized treatment regimes and explore new ways of managing scoliosis and its social and emotional consequences. They run workshops, connect specialists, empower individuals, build community, raise awareness and provide resources.
Education:
Scoliosis and Spine Online Learning Center is an outstanding resource. The intended audience is health care practitioners; however, much of the content is relevant to people with spinal fusions as well as parents. I highly suggest diving in and learning as much as you’re able to from any given webinar.
Scoliosis and Spine Online Learning Center delivers engaging, online learning for health care professionals in the field of scoliosis and spinal conditions. Its certified teachers and practitioners include the world’s foremost authorities in their respective fields. Webinars pertaining to spinal fusions include: Post Op Physio Scoliosis Specific Exercises; Scoliosis, Spinal Fusion, Mental Health – What to Expect and How to Develop Resilience; Scoliosis Operative Management, and Vertebral Body Tethering.
Books:
All the Difference by Patricia Horvath. All the Difference is a captivating account of the author’s transformation from a visibly disabled young woman to someone who could, abruptly, “pass” for able-bodied. In prose that is searing and humorous Patricia Horvath details her experiences with bracing and spinal fusions, as she considers family dynamics, the literature of physical transformation and spinal fusion, and how folk and fairy tales shape our attitudes towards the disabled.
Bent But Not Broken: One Family’s Scoliosis Journey by Andrew Butters. Bent But Not Broken is a heartfelt journey of a girl and her family as they navigate the healthcare system from diagnosis to surgery and beyond. Follow them as they use their own words in blog posts and through an emotional and gripping narrative that puts you by their side through all the ups and downs, challenges and successes, of an experience that changed their lives and taught them that compassion and love builds strong communities, even stronger families, and that true strength comes from the most unlikely sources.
When Life Throws You A Curve: One Girl’s Triumph Over Scoliosis by Elizabeth Golden. When Elizabeth Golden, a typical 13-year-old student who enjoyed hanging out with friends, playing sports and laughing out loud, was diagnosed with Scoliosis and faced major surgery, she was understandably apprehensive about her future. There was one thing, however, that Elizabeth was quite sure of — that there would always be others facing similar challenges, and they could benefit by knowing she shared their pain, fear, uncertainty, joy and triumphs. Out of her journal was born When Life Throws You a Curve: One Girl’s Triumph Over Scoliosis.
Facebook Groups:
Forever Fused is a closed Facebook group for individuals who have had spine fusion surgery for scoliosis. The group tries to focus on “living well after scoliosis spine fusion” and appreciates all help keeping the conversation positive, inspirational, and encouraging. They believe the body/mind connection is powerful and what you see and hear influences the health of your body.
Our Flatback Syndrome is a Facebook group for people who have had or need revision surgery for Flatback Syndrome from a long spinal fusion to correct scoliosis, that was done with older hardware (Harrington rods/CD rods) and left them without a lordotic curve. It is not a group of medical professionals, just folks who have been there trying to help others going through similar situations by providing information.
Activities and Sports for Spinal Fusions is for participants with spinal fusions to share their experience with particular sport or activity. Please always consult with your doctor if you decide to engage in a sport or if in doubt who have had or need revision surgery for Flatback Syndrome.
