Understanding your child’s diagnosis of idiopathic scoliosis can be difficult to say the least. Approximately 4 out of every 100 children in your community will have scoliosis. The most common form of idiopathic scoliosis (no known cause) is adolescent scoliosis which makes up about 80% of those diagnosed or 3.2 of the 4. Adolescent idiopathic scoliosis is defined as a scoliosis of the spine that is diagnosed between the ages of 10 and 16 or before the bodies bones are done growing referred to as skeletal maturity.
As a parent you have to quickly understand a few terms and concepts when dealing with a diagnosis of scoliosis. The first key concept is the progressive nature of this condition. Severe progression is likely to occur in 25% of children diagnosed with AIS (adolescent idiopathic scoliosis) so 75% of kids will likely not have a curve in their spine that worsens to a surgical level of more than 40 degrees. Of the 25% with increased risk of progression only 1% of the children in this group will be at a high risk considered 99% chance for developing a surgical level scoliosis of greater than 40 degrees.
The next term to familiarize yourself with is the Cobb angle which is the accepted standard measurement for a spine that is crooked or bent more than 9 degrees. The Cobb angle is measured in degrees and is a very simplistic way to get a feel for the severity of curvature. There are much more sophisticated ways of measuring scoliosis but most doctors still use this method. The number is given to you at diagnosis which can range from 10 degrees to upwards of 100 degrees depending on what satge the scoliosis is discovered. The Cobb angle will be categorized into three main groups, according to the AMA, 10-25 is early stage or mild scoliosis, 25-40 is moderate scoliosis, and a spinal curvature above 40 degrees is considered advanced progressive scoliosis. A severe scoliosis is considered by most authorities to be 60 degrees or higher. The term severe is used in reference to the potential influence of scoliosis on the pulmonary system causing a decrease in breathing capacity.
The current medical model for scoliosis treatment consists of three categories which are essentially all determined by the Cobb angle measurement. Spinal curves between 10-25 degrees are observed generally for a 6 month period before another measurement is taken via x-ray. If the scoliosis remains under the 25 degree barrier they will continue on the 6 month schedule until your child reaches skeletal maturity. Spinal curves between 25-40 degrees are prescribed a spinal orthosis for scoliosis brace treatment.
Scoliosis brace treatment involves a fitting session with an orthotist, who is a specialist in making spinal braces. The goal of this session is to create a brace that forces the spine straighter in an attempt to halt progression. The doctor will then recommend a timeframe that your child wears the brace generally everyday for 20+ hours is recommended. After a period of again 6 months an x-ray is performed to see if the scoliosis is not getting worse. If it is not getting worse the same recommendations are given regarding scoliosis brace treatment until either your child reaches skeletal maturity or the curvature gets worse. If the scoliosis continues to get worse even with scoliosis brace treatment the doctor will still recommend wearing the brace until the measurement reaches the 40 degree surgical threshold at which time a consultation occurs between you and the surgeon to explain the fusion procedure and schedule a time to ultimately perform the procedure.
Successful management of adolescent idiopathic scoliosis is more about making informed decisions versus following scoliosis treatment dogma. Burying your head in the sand and essentially allowing the medical industry to manage your child’s scoliosis is the equivalent of letting a surgeon remove your leg without giving you a reason why. Scoliosis treatment and scoliosis prognostication has changed immensely in the past 5 years. The medical community’s scoliosis treatment model has not caught up with the current understanding of what makes this condition tick. So in a sense the scoliosis treatment model continues to do the same old thing even though there are several breakthroughs in understanding its cause and cure. Not unlike a medication that remains on the market for a year even though it is known to cause kidney damage until eventually it is pulled from the shelf with little apology to all the people that now have kidney damage from using it. In this example if you were to dig a little before taking the medication you may have learned about its well known side effects and decided not to take it rather than just following doctors orders.
Understanding the statistics is the first step in proper management of scoliosis treatment. The second step is having a proper game plan that moves from least invasive to most invasive and avoids doing nothing. As a parent you have the right to make decisions and ask questions this is your child we are talking about. The first step to proper scoliosis management, understanding the statistics, is achieved by getting a scoliscore. The genetic test should be performed upon initial diagnosis to determine your child’s genetic risk factor. It is a simple saliva test that is covered by insurance. The reason this is extremely important is it will allow you to quickly categorize your child into one of three risk levels, low risk, intermediate risk, or high risk of developing severe scoliosis. Once you have this test performed the second step regarding your game plan is to take a proactive position rather than a reactive position.
A proactive approach simply means start scoliosis treatment immediately. The watching and waiting mentality is not a treatment strategy it is a gambling strategy. This overwhelming complacency within the medical model regarding mild early stage scoliosis is foolish. For instance even if your child has a 15 degree scoliosis and is in the 75% low risk genetic category they still are at risk for their curvature to get worse. It most likely won’t reach surgical levels of 40+ degrees but the genetic test only predicts progression to this level of curvature so a 15 degree scoliosis can with a low genetic score still progress to let say 35 degrees. A 35 degree scoliosis is at further risk of progression in adulthood and may place your child at a significant risk for developing pain and a decreased quality of life. On its way to reaching 35 degrees you will enter the 25-40 treatment zone which will unfortunately put you in the orthotist’s fitting room for scoliosis brace treatment. My point here is that LOW risk doesn’t mean that you can go home and forget about it because the doctor said it essentially won’t progress to 40.
A truly proactive approach means that you will have to take the initiative to search for available scoliosis treatment methods for mild scoliosis. There will be a couple of different options. Scoliosis is broken down, like all diseases, into two primary factors that ultimately control the magnitude or expression of the disease, one being genetics, and the other being our environment. Since you can not change your child’s DNA you have to look for the best ways to alter and reduce the environmental factors influencing the progressive nature of the condition. So for mild scoliosis where observation is generally recommended you need to have a better understanding of environmental influences on scoliosis. Most experts agree that scoliosis is not a condition involving bones, or muscles but mainly involving the nervous system with some other biochemical factors as well.
The key to successful scoliosis treatment management lies with avoiding status quo thinking and gaining a current understanding of what scoliosis statistical analysis using genetic predisposition is all about and those environmental factors that are most influential on the progressive nature of the scoliosis condition. Following doctors orders when it comes to scoliosis treatment recommendations will most often lead to frustration, anxiety, and poor outcomes.