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Scoliosis Resources & References

Resources & Narratives for Pediatric Scoliosis Patients & Caregivers

Online Communities for Adults/Adolescents with Scoliosis

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Pain/Strengthening Resources:

Advocacy: 

 

Personal physical recommendations for scoliosis pain: 

  • A plug-in heating pad is helpful → Often the back muscles feel frozen with stiffness, heating them can help to melt the tension. 

  • A shower chair can help when standing in the shower becomes exhausting.

  • Physical therapy & posture adaptations: With my physical therapist, I learned valuable postural adaptations specific to my scoliosis – adjusted positions for standing and sitting to my curve. For example, I stand with my left foot slightly ahead of my right, and when seated, only cross my left leg over the right. There are things I don’t do that I used to do, like put up my left leg while driving. There’s a sensory element to some movements you’re used to, and exercises can help meet sensory needs proactively. Each posture will vary for your curve and please consult someone knowledgeable about your curve.

  • Alexander Technique - a very valuable approach to postural awareness that emphasizes mindful lengthening and expanding. I recommend the book Body Learning by Michael Gelb and videos on AT. A thesis on scoliosis & Alexander technique: 

  • Pillows while driving - I use a neck pillow, a 1-inch cushion on the seat as a buffer between the car seat and my fusion, and a pillow on my lower back.

  • Sensory tools: Therabands and having a bar you can safely grab and hang on to stretch does a lot for my sensory regulation. 

  • Adaptations: Chairs with backs! It often hurts to sit in a backless chair for a long time. When going out, I often bring a chunky sweater with me to sit on like a cushion for hard wooden or metal chairs to add some give between wood and my metal spine. I also tend to lay on my back to do computer work–sometimes your back just needs you to lay down (I am right now!)

Scoliosis Research/Education:

 

Creative Arts & Scoliosis: 

 

Empowerment: 

 

General Mental Health Resources: 

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Facts about my experience:

  • I was treated for and diagnosed with adolescent idiopathic scoliosis from 2012–2018.

  • At 11 years + 4 months: after a school scoliosis check, an x-ray was done, showing a right curve measuring 32°

  • At 11 years + 6 months, I had a consult with my future surgeon: “The only option we have to offer in hopes of preventing her curvature from progression would be a custom-made TLSO brace. We explained that a brace is not 100 percent guaranteed to keep the curve from progressing, but again, it is our only treatment option at this time.” - from my medical record

  • At 11 years + 9 months: I began wearing the brace 20 hours/day for 2 years.

  • At 13 years + 9 months: apparent skeletal maturity and bone age analysis indicated that I was at Risser 4-5, and bracing prescription was lifted.

  • I had 2 follow up appointments, December 2014 and March 2015, where my curve was developing but still Risser 4-5. I was told the curve had some risk of progressing, but still, just to come back in a year. 

  • The curve progressed significantly from 2015 grade to 2016. 

  • In May 2016 they found a 50° curve, scheduled surgery for August 2016.

  • At 15 years 10 months: Had the surgery on August 17, 2016, one complication of a pinched nerve resulting in numbness in my right thigh, (I occasionally feel tingling there to this day) and a lung collapsed during the surgery but recovered. 

  • Around 5 years after fusion, I began having recurring pain in my back shoulderblade, radiating down my left arm. 

  • I started physical therapy for the pain in January 2024. 

  • In July 2025, I saw a rheumatologist when I wanted clarification on what caused the new shoulder pain if not my scoliosis and investigate any rheumatological factors in my scoliosis. They noted benign hypermobility but no further diagnoses were given.

References

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Additional research on scoliosis’ psychological/psychosocial correlations:

  1. Mitsiaki, I., Thirios, A., Panagouli, E., Bacopoulou, F., Pasparakisl, D., Psaltopoulou, T., Sergentanis, T. N., & Tsitsika, A. (2022). Adolescent Idiopathic Scoliosis and Mental Health Disorders: A Narrative Review of the Literature. Children (Basel, Switzerland), 9(5), 597. https://doi.org/10.3390/children9050597

  2. Al Hajaj, S. W., Al Hajaj, D., Singh, P., Bharadwaj, S., Nair, V., & Srinivasan, S. H. (2025). "The silent strain: Exploring self-image and mental health in braced adolescents with scoliosis": a scoping review. Journal of clinical orthopaedics and trauma, 70, 103217. https://doi.org/10.1016/j.jcot.2025.103217

  3. Abu-Zahra, M. S., Karakash, W. J., Kistler, N., McCavitt, D., Avetisian, H., Rusu, D., Lindgren, A., Yoshida, B., Wang, J. C., Alluri, R. K., Safaee, M. M., & Hah, R. J. (2026). Mental health disorders in adolescent idiopathic scoliosis surgery: prevalence, postoperative outcomes, and opioid use. The spine journal: official journal of the North American Spine Society, 26(3), 594–601. https://doi.org/10.1016/j.spinee.2025.10.006

  4. Bertuccelli, M., Rubega, M., Cantele, F., Favero, C., Ermolao, A., Formaggio, E., & Masiero, S. (2023). Body-Related Attentional Bias in Adolescents Affected by Idiopathic Scoliosis. European journal of investigation in health, psychology and education, 13(9), 1909–1919. https://doi.org/10.3390/ejihpe13090138

  5. Talić, G., Ostojić, L., Bursać, S. N., Nožica-Radulović, T., & Stevanović-Papić, Đ. (2016). Idiopathic Scoliosis from Psychopathological and Mind-Body Medicine Perspectives. Psychiatria Danubina, 28(4), 357–362. https://pubmed.ncbi.nlm.nih.gov/27855426/

  6. Huang, H., Zhang, G., Hu, X., Zhang, Z., Xie, H., & Wang, C. (2026). Multidimensional psychosocial characteristics of adolescents with idiopathic scoliosis in China: a controlled cross-sectional study. BMC psychology, 14(1), 748. https://doi.org/10.1186/s40359-026-04470-0

  7. Bertuccelli, M., Cantele, F. & Masiero, S. Body Image and Body Schema in Adolescents with Idiopathic Scoliosis: A Scoping Review. Adolescent Res Rev 8, 97–115 (2023). https://doi.org/10.1007/s40894-022-00187-4


 

Theories/data surrounding potential etiologies of scoliosis:

I can only comment on my experience and on current, publicly-available research. I don’t rule out any potential causes for scoliosis, a condition with an unknown cause. I note that regarding scoliosis’ etiology, there are more “letters to the editor,” internal arguments amongst scientists, and controversies in the literature than I’ve seen on any other medical topic.

  1. Becker, L., Li, Z., Wang, Z., Pumberger, M., & Schömig, F. (2023). Adolescent idiopathic scoliosis is associated with muscle area asymmetries in the lumbar spine. European spine journal, 32(11), 3979–3986. https://doi.org/10.1007/s00586-023-07921-z

  2. Park, Y., Ko, J.Y., Jang, J.Y. et al. Asymmetrical activation and asymmetrical weakness as two different mechanisms of adolescent idiopathic scoliosis. Sci Rep 11, 17582 (2021). https://doi.org/10.1038/s41598-021-96882-8

  3. Duncombe, P., Dick, T., Ng, P. T. T., Izatt, M. T., Labrom, R. D., & Tucker, K. (2025). Beyond the Curve: The Muscle-Specific Asymmetries of Adolescent Idiopathic Scoliosis. JOR spine, 8(4), e70129. https://doi.org/10.1002/jsp2.70129

  4. Wong, A. Y. L., Samartzis, D., Cheung, P. W. H., & Cheung, J. P. Y. (2019). How Common Is Back Pain and What Biopsychosocial Factors Are Associated With Back Pain in Patients With Adolescent Idiopathic Scoliosis?. Clinical orthopaedics and related research, 477(4), 676–686. https://doi.org/10.1097/CORR.0000000000000569

  5. Independent narrative: The Root Cause of Idiopathic Scoliosis https://medium.com/@michaelrosen_94192/the-root-cause-of-scoliosis-5c461002b634

  6. Independent narrative: Idiopathic Scoliosis: A Psychosomatic Cause? https://deeperlayers.com/idiopathic-scoliosis-treatment-neuromuscular-massage-therapy/

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Research on effectiveness of scoliosis treatments: 

  1. Kastrinis, A., Strimpakos, N., Koumantakis, G. A., Tzatzaliaris, D., Oikonomaki, M., & Dimitriadis, Z. (2026). Evaluating the Effect of the Schroth Method on Sensorimotor Control in Adolescents with Idiopathic Scoliosis: A Controlled Clinical Trial. Journal of functional morphology and kinesiology, 11(1), 127. https://doi.org/10.3390/jfmk11010127

  2. Bali A, Mehta N, Garg B. (2026) Management options in early-onset scoliosis: A summary of current evidence. Journal of Clinical Orthopaedics & Trauma, 77  https://doi.org/10.1016/j.jcot.2026.103437

  3.  Royse, L. A., Saparova, D., Boeyer, M. E., & Hoernschemeyer, D. G. (2025). How Do Patients Perceive Success and Satisfaction After Vertebral Body Tethering and Fusion for Adolescent Idiopathic Scoliosis? A Qualitative Study. Clinical orthopaedics and related research, 483(6), 1124–1138. https://doi.org/10.1097/CORR.0000000000003373

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Additional research on scoliosis commorbidities:

  1. De Salvatore, S., Di Cosimo, G., Inverso, M., Brigato, P., Oggiano, L., Sessa, S., Palombi, D., Palmieri, F., Guida, S., Contursi, A., Fumo, C., & Costici, P. F. (2026). Preoperative Psychological Factors and Early Postoperative Pain After Posterior Spinal Fusion for Scoliosis: A Retrospective Preliminary Study. Medicina (Kaunas, Lithuania), 62(4), 698. https://doi.org/10.3390/medicina62040698

  2. Yan, L. I., Wong, A. Y., Cheung, J. P., Zhu, B., Lee, K. C., Liang, S. R., Ll, J. Y., Ho, B. Y. W., & Bressington, D. (2023). Psychosocial interventions for teenagers with adolescent idiopathic scoliosis: A systematic literature review. Journal of pediatric nursing, 73, e586–e593. https://doi.org/10.1016/j.pedn.2023.10.037

  3.  Alimam, D., Alhafdhi, N., Alrashed Alhumaid, L., Alamrani, S. A., & Bin Shebreen, A. (2026). Quality of Life in Adolescents with Idiopathic Scoliosis: A Longitudinal Study Exploring the Impact of Psychological Distress, Joint Hypermobility, Body Mass Index, and Physical Activity. Journal of clinical medicine, 15(14), 5422. https://doi.org/10.3390/jcm15145422

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Caregiver-specific research: 

  1.  Zaina, F., Ferrario, I., Bakhsh, H. R., Donzelli, S., & Negrini, S. (2025). SCaRES - scoliosis caregiver response and emotional scale: a Rasch-validated questionnaire to measure the psychological impact of children's scoliosis on their parents. European spine journal, 34(11), 5224–5231. https://doi.org/10.1007/s00586-025-08983-x

 

Pain management research:

1. Karagianni, D.M., Katsiari, C.G., Bonotis, K., & Sakkas, L. (2026). Psychological Aspects of Rheumatic Diseases: Psychorheumatology in Clinical Practice. Rheumatol Ther 13, 885–898. https://doi.org/10.1007/s40744-026-00868-9

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2. Pelky, M. (2026). Interdisciplinary collaboration improves outcomes: children undergoing posterior spinal fusion surgery. Pain management nursing: official journal of the American Society of Pain Management Nurses, 27(2), e225. https://doi.org/10.1016/j.pmn.2026.01.018

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3. Aboushaar, N., & Serrano, N. (2024). The mutually reinforcing dynamics between pain and stress: mechanisms, impacts and management strategies. Frontiers in pain research (Lausanne, Switzerland), 5, 1445280. https://doi.org/10.3389/fpain.2024.1445280

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