Syringomyelia

Often, a cyst forms because of a condition that changes the normal flow of cerebrospinal fluid (CSF). The CSF can build up in the spinal cord and form a cyst.

Children who have other problems involving the brain and spinal cord often have syringomyelia, too. Many times, these related problems are present when a baby is born (congenital), such as:

• Chiari malformations, problems with how the brain sits in the skull
• Hydrocephalus, a buildup of CSF in the brain
• Myelomeningocele, a serious birth defect that leaves the spinal cord open and unprotected
• Lipomyelomeningocele, a fatty lump attached to the spinal cord

Other conditions that may happen during childhood or later in life can also cause a cyst to form. These include:

• A spinal cord that is pulled down and stuck (tethered) in a child’s spinal canal
• Spinal cord tumors
• Injury to the neck or spine
• Meningitis, an infection of the covering of the spinal cord and brain

Not all children with these conditions develop syringomyelia. Sometimes there is no clear cause.

• Dr. Richard G. Ellenbogen has treated more than 1,000 patients with syringomyelia or Chiari malformation. He serves on the scientific, education and advisory board of the nonprofit Chiari & Syringomyelia Foundation.
• Seattle Children’s is the only hospital in the region with round-the-clock, on-site coverage by a pediatric neurosurgeon.
• In our Neurodevelopmental Clinic, experts in many medical areas work together to care for children who have problems in their thinking, balance, learning or emotions. We work with children long-term to help them reach their full potential.

• Our first step in your child's care is making an accurate diagnosis. We are expert at diagnosing and treating the related conditions that can cause syringomyelia.
• We perform more neurosurgeries than any other children’s hospital in our region (Washington, Alaska, Montana and Idaho). More cases mean greater surgical expertise and a sharper ability to decide if surgery is even needed. That adds up to better outcomes.

We coordinate care so your child gets treated for related conditions they may have. We work with you and with your child’s other providers, from diagnosis and treatment, through rehabilitation and follow-up.

Your child may see experts in: 

• The brain and nervous system (neurosciences)
• Child development (neurodevelopmental)
• Rehabilitation medicine
• Disorders affecting the spine
• Urology

• Dr. Richard G. Ellenbogen uses MRI (magnetic resonance imaging) to better understand the flow of CSF around the brain and spinal cord. Learn more about Seattle Children’s research on brain and spinal cord malformations.
• Dr. Ghayda Mirzaa studies brain tissue from children who have had surgery to learn how genes might affect the way the back of the brain develops. His research in the lab may help tell if spinal cysts are different in children who also have Chiari malformations.
• Our researchers are creating a new kind of shunt to reduce the need for repeat operations in children with fluid buildup in their brains. Read about Seattle Children’s hydrocephalus research.
• Children we treat have the option to take part in research studies of promising new treatments. These are called clinical trials. They can be especially important if your child’s condition is not well controlled with standard medicines or surgeries.

• Learning that your child has syringomyelia can be stressful for the whole family. For children who need urgent treatment, Seattle Children’s is the only hospital in the region with coverage 24 hours a day, 7 days a week by a pediatric neurosurgeon.
• During visits, we take time to explain your child’s condition. We help you fully understand your treatment options and make the choices that are right for your family.
• Our doctors, nurses, child life specialists and social workers help your child and your family through the challenges of their condition. We connect you to community resources and support groups.
• At Seattle Children’s, we work with many children and families from around the Northwest and beyond. We can help with financial counseling, schooling, housing, transportation, interpreter services and spiritual care. Read about our services for patients and families.

• Children don’t react to illness, injury, pain and medicine in the same way as adults. They need – and deserve –care designed just for them. They need a healthcare team specially trained to understand and meet their needs.
• Our doctors have special training to diagnose and treat children. They are focused on how today’s treatment will affect your child as they develop and become an adult.
• Our experts base their treatment plans on years of experience and the newest research on what works best – and most safely – for children and teens.