Demystifying Scoliosis: From Diagnosis to Treatment

Written by on July 1, 2013 in Insight - No comments

Scoliosis, or more specifically, Adolescent Idiopathic Scoliosis (AIS) is the most common disorder of the spine in childhood.  It occurs in as many as one percent of the population, with girls affected more than twice as often as boys.  With such a high prevalence, it is probable that almost everybody in the country knows someone with scoliosis.

Simply put, scoliosis is one of those things that folks know exists but just don’t talk about.    The affected population is among the most secretive and insecure of demographics – teenagers.  The typical age at presentation is between nine and twelve years old, right in the midst of puberty. Teenagers are far less likely to open up about their concerns and ask the vital questions about any medical condition, let alone one that they fear will make them stand out as ‘different.’  As such there are a number of myths and misconceptions about curvature of the spine which without proper communication may cause undo fears and concerns.

Back-CurveWEBThe biggest myth about scoliosis is that it is a disease – that somehow the spine is not healthy in children who have curvature.  This is emphatically not true!  A small number of curves may be caused by abnormal growth of the spine bones, but the majority of them occur in otherwise normal spines.  A child with scoliosis may have more back pain in adulthood than those without curves because of mechanical issues in the surrounding muscles, but the ligaments, nerves, discs and other structures in the spine are completely normal in their function and development.

Arising from this fear is the misconception that children with spinal curvature will not be able to do everything they are accustomed to once they have the diagnosis.  Because their spines are normal, children with scoliosis have no limitations on their activities at all.  I have patients who are active dancers, cheerleaders, and athletes of all kinds.  I encourage them all to be as fit and active as possible.  The muscle imbalance may require more stretching, but this seldom interferes with their activity level.

Another concern and misconception among children and families is that all scoliosis patients will ultimately go on to require surgery.  In fact, only about ten percent of children with curvature of the spine need any sort of treatment.  In most cases where the curve is progressing the treatment consists of a brace – a plastic shell which holds the spine in a corrected position while the child is growing.  Although the braces can be uncomfortable and inconvenient, there are now regimens that require brace wear only part of the day, leaving the child free during daytime hours while at school and sports.  The braces can be very effective at stopping progression of a curve and decreasing the need for surgery.

In those cases where the curve is severe or causing pain, surgery may be required.  The procedures which correct and stabilize the spine with bony fusion are safe, reliable and generally well-tolerated by most children.  Most of these surgeries are done in the mid to late teens.  Children are out of school for about a month after the surgery and, depending on the length of the fusion, most children can be back to full activities by about three months after the surgery.  Even after surgery, children can return to most activities, limited only from extreme contact afterwards.

The importance as physicians is to have a good sense of the prognosis of a given curvature so that the patient and family can understand what the treatment course may entail.  When a child is first diagnosed with scoliosis, usually after a screening examination by her pediatrician, we try to assess how much growth is remaining and how likely the curve is to progress.     The evaluation by a pediatric orthopaedic specialist includes a complete nerve and musculoskeletal evaluation and often an x-ray to determine the magnitude of the curve.  The curve is defined by the angle that the bones form with one another, termed the Cobb angle.  A mild curve may be between 10 and 25 degrees, whereas a severe curve is generally over 40 degrees.  Curves in the mid-range may need bracing, whereas surgery is reserved for those with severe curves.

However, sometimes it is difficult to know how the condition will progress with any given patient. And most of the alarm that families experience can be attributed to the uncertainty regarding exactly how a child’s spinal curve will progress as they grow. But that uncertainty can be dramatically reduced through an FDA approved genetic test as part of the standard of care. The ScoliScore Test is the first and only genetic test proven to give physicians and parents ‘insight into the possible progression of AIS, reducing the uncertainty of progression and allowing for a more personalized treatment plan. For patients between the ages of 9 years to skeletal maturity, the ScoliScore test is clinically validated and analyzes 53 genetic markers associated with spinal curve progression in AIS patients. To take the test a patient provides a saliva sample, which is then sent to a lab to be analyzed. Research shows that the test is 99 percent accurate in predicting the risk of curve progression in the low risk group and 95 percent accurate in the high-risk group.

Based on clinical evaluation and test results, as well as other factors such as family history or history of pain, the specialist will work with the child and family to develop a plan to observe or to treat the curve. Regardless of the treatment plan, it is most important to encourage the child with scoliosis to reach out to other people with curves and to find out as much information as possible.  There are a number of resources available for children and families with the diagnosis.  In my community, we have developed a patient-run support group with a website and monthly meetings for informative and recreational activities.  Similar groups around the country include the Curvy Girls Network and local chapters of the National Scoliosis Foundation.  In addition, there are very good resources on the internet as well as commercially available books that review all aspects of the condition.  Activities that are emphasized during Scoliosis Awareness Month are often available year round in many communities as well.

Spinal curvatures should be accepted by society in the same way we accept red hair or left handedness.  Most of all, it is important to provide as much information about scoliosis as possible to patients, as well as their friends and families, so that we can effectively demystify the process and let the children get on with other far more important aspects of their developing lives.

By Keith Mankin, MD, FAAP

About the Author

Keith Mankin, MD, FAAP, is a board-certified, fellowship trained pediatric orthopaedic surgeon in Raleigh, NC where he a staff member with the Department of Orthopaedics at WakeMed Healthcare Center and with the Department of Orthopaedics at Rex Hospital   Previously, he was on clinical staff at the Massachusetts General Hospital in Boston, where he had a teaching appointment at Harvard Medical School.  He also has been an Adjunct Clinical Assistant Professor in the Department of Orthopaedics at the University of North Carolina School of Medicine.

After graduating cum laude from Harvard University, Dr. Mankin earned his medical degree from the University of Pittsburgh School of Medicine in Pittsburgh, PA.  He completed a surgical internship at Massachusetts General Hospital then his orthopaedic surgery residency at the Combined Harvard Orthopaedics Residency in Boston.  He also received advanced fellowship training in pediatric orthopaedics at the Massachusetts General Hospital.  He has been recognized on several occasions for his research and teaching accomplishments

Leave a Comment

Please type the characters of this captcha image in the input box

Please type the characters of this captcha image in the input box