When a child is newly diagnosed with AIS, it’s only natural for parents to wonder about the long term effects of scoliosis. Having that background is helpful when it comes to deciding on scoliosis treatment during the adolescent years and beyond.
It’s impossible for anyone to tell you with certainty what long term effects of scoliosis may occur in your child’s life, in the near- or far-future. There is no crystal ball for scoliosis, only guesstimations based on clinical studies and professional experiences. The studies on the natural history of scoliosis (i.e. untreated) are limited; however, two are fairly comprehensive and offer some helpful insights.
In this post, we’ll summarize key points from those studies and also include a discussion of other feedback we hear from patients. If you prefer to read the studies mentioned and draw your own conclusions, please link to our Research page to read more.
Health and function of patients with untreated idiopathic scoliosis: A 50 year natural history study.
This study by Weinstein et al. describes the most common potential long term effects of scoliosis as respiratory dysfunction (viral), psychosocial effects due to posture asymmetry, higher rates of back pain or discomfort (though they note this does not appear to cause excessive disability), loss of equilibrium (i.e. car sickness), gait abnormalities, and muscle strength and/or endurance problems (1).
While the above-mentioned may seem disconcerting, the authors did not find any evidence linking untreated late-onset adolescent idiopathic scoliosis with increased rates of mortality in general, or from cardiac or pulmonary conditions that could be potentially related to the curvature. A follow-up of more than 20 years found no difference in the quality of life (including back pain and function) between AIS patients who had surgery and AIS patients who remained untreated. The authors also noted that curves less than 30° at skeletal maturity rarely get worse, but that patients with idiopathic scoliosis generally ‘perceive themselves to be less healthy than their peers and experience limitations in certain activities such as lifting, walking long distances, standing and sitting for periods, and traveling and socializing outside the home.”
Natural history of adolescent idiopathic scoliosis: a tool for guidance in decision of surgery of curves above 50°
Danielsson conducted a literature review and published the following conclusions about the long term effects of scoliosis:
- “Most patients with AIS function at or near normal levels, even though pain is more prevalent.”
- “Self-image is often slightly diminished. Mental health is usually normal.”
- “For social function, childbearing, and marriage – no apparent disadvantageous effects were reported compared to the healthy population.”
- Most individuals with AIS and moderate curve size around maturity function well and lead an acceptable life in terms of work and family. Some patients with larger curves have pulmonary problems, but not to the extent that this affects the life span. This needs to be taken into account when discussing surgery with the individual patient.
- “Surgery, consisting of instrumentation and arthrodesis has virtually eliminated large thoracic curves, although most patients are satisfied with their results, follow-up at 20+ years shows significant, clinically relevant decrease in function and increase in pain compared to controls. Re-operation is required in 6 – 29%.” (2)
Our Patient Experience
Our experience treating scoliosis also shows that some patients experience back pain, while others do not (not dependent on Cobb angle severity). Some are bothered by their postural appearance, while others don’t mind as much. What bothers one patient significantly affects others to a lesser extent, or not at all. Other common complaints are hip pain, knee pain, arch/foot pain, and sometimes esophageal problems.
For adolescents, pain isn’t typical (though not completely unheard of). The kids we see are mostly concerned with matters of appearance. Parents are almost always concerned with the appearance of an uneven posture whether the scoliosis is mild, moderate or severe. Of course, worrying is the nature of parenthood, so we completely understand. The rib prominence (seen when bending forward) is probably the most common concern. Other asymmetries which can prove bothersome include the ventral prominence, hip prominence, and unleveled hips/shoulders.
Women of post-menopausal age tend to report spinal fatigue as a primary complaint. Many describe it as a feeling of collapse, or not being able to hold oneself up as the day goes on. This fatigue can be accompanied by pain so that’s usually the impetus for patients seeking treatment for scoliosis management.
Marc recently saw a senior patient (over 70 years old) with a severe curve who just discovered she had scoliosis. She had only recently learned she had it when she noticed her shoulders were a bit off. So while it’s not likely, it is possible to have scoliosis and not even know it.
While all of these effects are worthy of concern, we continue to question the rush to surgery for scoliosis. As the evidence shows, the natural consequences of scoliosis are rarely grave. According to Danielsson, physicians often recommend surgery because of concerns about progression leading to problems with pulmonary function. Our intensive Schroth program addresses this. In fact, we’ve published a paper on the positive influence our Schroth program can have on pulmonary function – even in the short-term. Given the evidence, we are advocates of trying conservative methods before turning to surgery.
Danielsson noted that revision surgery for scoliosis was reported at 6-29% (2). Mueller and Gluck claim it’s closer to 48% (3). Interestingly, in practice, long-term post-surgical outcomes are rarely studied. One of our post-surgical patients first called from the ER of a hospital in the midwest. She was crying in pain and her friend recommended she call us. She came to see us to learn our Schroth program and be fitted for a Gensingen brace to help alleviate her post-surgical pain. She is since doing much better, and her story elucidates the fact that surgery is not a perfect, “quick-fix” solution.
Aside from bracing, most surgeons still fail to recommend conservative scoliosis treatment interventions. Why haven’t surgeons recommended a more active management role for patients, even when the patients ask? The answer usually given is that ‘exercise for scoliosis doesn’t work.’ While this is true for general exercise, pattern-specific-scoliosis rehabilitation (PSSR) is a different story and has never studied by surgeons. It is making a significant impact for many patients.
Regarding bracing, we’ve seen many times that is comes later in the process than it should for some kids, or it can end too soon (before complete skeletal maturity), and the wrong braces are recommended. 3D bracing is far more technologically advanced and offers young patients the best chance of improving scoliosis.
When considering the finding by Weinstein that “curves held to 30º or less at skeletal maturity will not likely deteriorate (progress) in adulthood,” we find ourselves questioning why the SRS guidelines for bracing don’t begin until 25° and why the prevailing recommendation for mild scoliosis is “watch and wait.” It is well accepted that the more a scoliosis progresses, the worse the prognosis becomes. This is why taking the right proactive steps, sooner, rather than later, matters.
When it comes to the long term effects of scoliosis, the good news is that even those who do nothing are unlikely to suffer life-threatening consequences. For those who do choose to follow a comprehensive nonsurgical scoliosis management approach, the outlook is likely to be brighter. We recommend being fiercely proactive during growth and right through skeletal maturity, and beyond when necessary. With the right interventions, there is much that can be done proactively to mitigate the long term effects of scoliosis, without surgery. It’s also worth pointing out that none of the listed long term effects of scoliosis are likely to be as severe as what happens during and/or after a surgery/resurgery gone wrong.
If you are interested in learning how to manage and treat scoliosis non-surgically, please contact us. Our aim is curve stabilization, at minimum, and optimally, curve reduction/improvement for adolescents. We do this through a comprehensive 5-part one-on-one Schroth program and our advanced Cheneau-Gensingen bracing.
Some of our patients also choose to add massage and/or regular chiropractic care for optimal spinal health and for adjunct pain relief. Like anything else, the key is to find the most qualified practitioners for treatment. Treating scoliosis conservatively requires a high degree of knowledge.
References
(1) Weinstein SL, Dolan LA, Spratt KF, Peterson KK, Spoonamore MJ, Ponseti IV. Health and function of patients with untreated idiopathic scoliosis: A 50 Year Natural History Study. JAMA 2003;289(5):559–567.
(2) Danielsson, AJ. Natural history of adolescent idiopathic scoliosis: a tool for guidance in decision of surgery of curves above 50°. J Child Orthop. 2013 Feb;7(1):37-41. Epub 2012 Dec 21.
(3) Mueller FJ, Gluch H: Cotrel-dubousset instrumentation for the correction of adolescent idiopathic scoliosis. Long-term results with an unexpected high revision rate. Scoliosis. 2012 Jun 18;7(1):13. doi: 10.1186/1748-7161-7-13
