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What is EOS

Treatment

What to Expect

FAQ

Glossary

Living with EOS

Being diagnosed with Early Onset Scoliosis can be challenging for patients and families. Diagnosis alone can be difficult because many pediatricians and primary care providers are unsure of treatments available as well as outcomes from those treatments. The Internet is full of resources available to help families cope with the diagnosis, including blogs, forums, and the like. These can often be a positive place for families to connect with each other about their experiences and provide hope for a diagnosis that can sometimes seem like a struggle to deal with. However, it can often be a place where one persons experience can somehow seem like truth for all. If one person tries an alternative therapy and sees improvement, often others try the same therapy with wildly variable outcomes.

There are several sub-categories of early onset scoliosis that are commonly recognized. Included are idiopathic, neuromuscular, syndromic, congenital, as well as scoliosis associated with tumors, infection, prior surgery or trauma. Congenital scoliosis is associated with the abnormal formation of the spinal vertebrae themselves and tends to be the most challenging to treat. This can also include malformation or fusion of the ribs of the chest wall, which can also lead to problems with lung development and a condition known as thoracic insufficiency syndrome (TIS). Syndromic scoliosis is associated with specific underlying syndromes and genetic conditions. Neuromuscular scoliosis is an abnormal curve associated with injury or disease of the central nervous system and is most commonly seen in children with spastic quadraplegia and cerebral palsy. Idiopathic scoliosis also occurs in early onset cases and like their adolescent counterpart, the etiology for these curves is not well understood.

The other big problem with going to the internet for advice is that there is little to no scientific validation of treatments proposed by patients, families, and alternative providers. Without objective evidence backing up any treatment, patients can be put at serious risk by trying unproven or unstudied therapies. At the least, this can be a financial hit to families. At the most, this can cause or allow the problem to get worse—requiring surgical treatment when none was initially needed, or requiring bigger and sometimes more complicated surgery to treat the issue.

Going to see the orthopedic surgeon

An orthopedic specialist who is well versed in Early Onset Scoliosis should help families and patients make decisions on treatment. Depending on the type of scoliosis and its severity, non-invasive methods can be utilized to straighten or minimize the curve. Sometimes, a plastic brace or a series of casts can be used to improve a childs spinal curvature. For more severe cases, sometimes surgery is required to control or correct a curvature.

Surgery

Surgery can be broken down into two main groups—growth sparing constructs and spinal fusions. Growth sparing constructs generally consist of a primary inpatient surgery to place spinal implants, followed by half-yearly to yearly outpatient surgeries to lengthen the constructs to allow for growth. These operations are usually performed on patients younger than 10 years old who have significant amounts of growth remaining. On the contrary, a spinal fusion consists of placement of implants into the spine and fusing those sections together so that the spine cannot continue to curve. This is generally done on patients older than about 10 years old or have less spinal growth remaining. Your orthopedic surgeon can discuss with you what type of surgery will be required and why.

Life after surgery

Quality of life after surgery and recovery, regardless of the type, generally is as good or better than before surgery. Children with very severe scoliosis generally see the most improvement because of improvements in the size of the space available for the lungs in the chest, thus improving their ability to breathe. Even children with more moderate or mild scoliosis see some improvement in the size and shape of their chests or at least prevention of progression of the curvature in the spine. The goal for the orthopedic surgeon is to provide the best quality of life for the patient at the conclusion of treatment and at the end of growth.