I have a teenage daughter who has not had her first period yet. Recently, the school sent us a note saying that she may have scoliosis, which was identified by the school nurse. What should we do now?
Scoliosis is a deformity of the spine. Instead of being straight, the spine has an abnormal curve to it. When viewed from the back, it has an S-shape, or in severe cases a C-shape. A minority of patients experience backache or pain. When the degree of scoliosis is severe, pain becomes more common.
Approximately 2% of the population has scoliosis, with females being at an increased risk.
When there is a family history of scoliosis, the risk for it in offspring runs as high as 15-20%. There is a very strong genetic component to scoliosis, but the exact gene has not been definitively identified. Nor have the genetic reasons been identified as to why some children experience a progression of their scoliosis while others do not.
Scoliosis may have its onset very early in life, but idiopathic scoliosis (meaning, we do not have a grasp on why it happens exactly) presents most commonly in an adolescent girl. Specifically, 85% percent of scoliosis is idiopathic.
It is important to know that poor posture or poor dietary habits do not lead to scoliosis. It is a genetically predisposed condition which cannot be prevented. Thus, early screening is important, especially in girls during their time of maximum spinal growth.
Given many girls are very private and shy around the time of the onset of puberty, this condition may be easily missed unless deliberate screening takes place. In some parts of North America, school nurses perform scoliosis screening at schools usually by the 5th or 6th grades. This is the time when the majority of girls experience most of their spinal and linear growth.
Parents can also screen at home where there is more privacy. The best time to look is when the patient has no clothes covering her back. Symptoms which may alert the observer are: shoulders at different heights; one hip higher than the other; a body leaning over to one side; and an uneven waist.
Another time to pick up on scoliosis is during well checks or annual exams with the primary care physician. In the physician's office, a test known as the Adams Forward Bend Test is considered standard of care. The patient is asked to bend forward from the waist down, with arms hanging vertically and an equal distance above the floor (as if trying to touch the toes). If there is an abnormality, the spine will be observed as s-shaped or one shoulder blade may be higher than the other. If this is the case, a radiograph of the back must be done.
The amount of curvature is measured by a radiologist using the Cobb method. Essentially, it tells the doctor the degree of curvature and the severity of the abnormally shaped spine.
If the curvature is below 20 degrees, patients are usually observed and followed closely every 6 months to see if there is progression. It is not possible to predict which patients will progress and which will be non-progressive. However, the younger the patient is at the time of diagnosis, the more likely the scoliosis will progress and worsen with time. Progression is also more likely in premenstrual patients. Moreover, curvature abnormalities in the upper spine are more likely to progress compared to those in the lower spine.
If the curvature is between 25 and 40 degrees, a brace should be considered. There are a number of braces available, all which attempt to slow down the progression as opposed to
reverse the pathology. Almost all of these braces have names of the city or center where it originated: Milwaukee brace, Boston brace, and the Charleston brace. The first two braces are used mainly during the day, for an average of 18 hours per day. However, the brace is taken off during sports. The Charleston brace is used at night when the patient is not vertical. Most of these braces only work up to 75% percent of the time. Compliance is a major issue as a great number of teen age girls are either embarrassed to wear it to school or they find it simply too uncomfortable.
If the curvature of the spine is worse (50 degrees and more), surgery becomes an option. This involves spinal fusion, usually of the upper (thoracic) spine. As many as 4 to 12 vertebrae may need fusion and bone grafting. The surgery takes a long time and requires a skilled surgeon. As well, the patient needs to be in the hospital for an average of one week, with most patients being able to get back to school after one month. Some surgeons will schedule the surgery to coincide with summer vacation, thus offering patients the least amount of time away from school. As for complications, they run as high as 3-5%, according to the Scoliosis Research Society's website (www.SRS.org).
Given the surgery involves long hours and intensive post-operative care, some surgeons such as Dr. Randy Betz, from the Shiner's Hospital in Philadelphia, have performed a less invasive procedure known as vertebral body stapling. Betz considers stapling at least as effective as bracing, although not all of his orthopedic colleagues agree.
Intensive exercise, manipulation, and electrical stimulation have not been successful for the most severe cases of scoliosis. A firm mattress is also important; waterbeds are discouraged.
Most patients who have surgery do well later in life. Girls should not be concerned about their ability to give birth naturally. In some countries, men who have spinal fusion are ineligible for military service (see www.scoliosis.org). Some surgeons get many of their patients back to activities such as organized sports in a graduated manner. But sports such as American Football, rugby, gymnastics, bungee jumping and sky diving are discouraged. Volleyball, basketball, tennis and soccer are considered fine. A lot depends on the degree of immobility and the flexion of the spine post-operatively.
For more information as well as discussions by patients who were diagnosed with scoliosis and how they coped with the unexpected news and subsequent management, I would recommend the following web site: www.iscoliosis.com.
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