Severe Scoliosis

Living with Severe Scoliosis

Scoliosis is a spinal condition affecting up to 3% of the United States population, or some six million people, and while most people have mild or moderate cases, some live with severe scoliosis.  Typically, this disorder is diagnosed in children between 10 and 15 years of age although on rare occasion, it shows up in adulthood.  Regardless, scoliosis involves curvature of the spine, which causes pain and a lifetime of various spinal problems unless repaired.

For people with mild to moderate scoliosis, life may be a little more challenging but in many cases, the person can use therapy and exercise to strengthen the back, and use pain and anti-inflammatory medication to be more comfortable.  Sometimes, a person with moderate scoliosis would need surgery to correct the curvature of the spine, which usually involves a rod being inserted to straighten the spine column.  However, for the more serious version of scoliosis, formally known as Arthrogryposis, the spine is curved to such a degree that it is literally debilitating.

All types of scoliosis manifest in one of two ways.  First, the spine may curve to resemble the letter “C”, which means only one curve affects the spine.  Second, the spine could curve to look like the letter “S” whereby the spine has two curves.  In most cases, scoliosis develops between the upper and lower back but it can develop in one area or the other.  For a diagnosis, the doctor would ask about the family history in that in 20% of cases, another family member would also be affected.

The doctor would then conduct a physical examination, looking specifically at the shape of the curve, location of the deformity, direction of the curve, and magnitude.  Based on the findings, the diagnosis would be mild, moderate, or severe scoliosis.  Using measurements in degrees, the extent of the curve along with the Angle of Trunk Rotation or ATR would be used.  If the curve were 20 degrees or less, the diagnosis would be mild scoliosis.  If the curve were between 21 to 79 degrees, the patient would have moderate scoliosis.  However, anything 80 degrees or more would confirm severe scoliosis.

Severe scoliosis or Arthrogryposis is rare with symptoms being extremely different from what someone with mild or moderate scoliosis would experience.  In mild and moderate cases, pain and difficulty standing, or some problems with mobility are common.  However, with Arthrogryposis, symptoms include problems with shoulder rotation, elbow extension, wrist rotation, hand flexing, hip flexing and rotation, knee flexing, and even club foot.  Other complications are common such as respiratory problems, slow or stunted growth, unbalanced facial features, abdominal hernia, lung hypoplasia, and even language and cognitive challenges.

While severe scoliosis sounds like a death sentence, the truth is with proper treatment, the person has a chance at life.  The condition cannot be reversed but quality of life can be improved.  The best treatment options include physical therapy to include stretching, mobility training, and strengthening.  Occupational therapy is also essential to improve fine motor skills.  Counseling helps with emotional and psychosocial challenges that come from having this disorder.  In addition, surgery to include orthopedic surgery to correct the clubfoot, repair of the hernia, and surgery to fix the dislocated hip are necessary.

After receiving a correct diagnosis for severe scoliosis and getting proper treatment, the individual would regain mobility and see a vast improvement in speech and cognitive areas.  Typically, therapy is vigorous and long-lasting but this coupled with surgery provides many people the opportunity for a normal and healthy life.