Chromosomal and Genetic Conditions

Syringomyelia

What is syringomyelia?

MRI of Chiari of syrinx before and after decompression.

MRI of Chiari of syrinx before and after decompression

Syringomyelia (se-ringo-my-EEL-e-ah) is a cyst in the center of the spinal cord that is filled with fluid.

The cyst, also called a syrinx (se-rinks), can form anywhere along the spinal cord. It can get larger and longer over time. This puts pressure on the spinal cord. The pressure can cause symptoms. If not treated, over time it may cause nerve damage.

  • 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:

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

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

Syringomyelia at Seattle Children’s

Seattle Children’s has a great deal of experience treating syringomyelia and the conditions that can cause it.

Damage to the spinal cord can worsen quickly. It is important to diagnose and treat problems right away. Our team has the skills, experience and special equipment to treat babies and children with this condition.

If you have questions, please contact our Neurosciences Center at 206-987-2016. If you would like an appointment, ask your child’s primary care provider for a referral.

    • 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.
    • Seattle Children’s neurosciences programs were ranked #1 in the Northwest in 2017 by U.S. News & World Report. We are consistently ranked among the nation’s best.
    • 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:

    • 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. William B. Dobyns 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.

Symptoms of Syringomyelia

Common symptoms of syringomyelia include:

  • Weakness
  • Pain
  • Numbness (decreased feeling)
  • Tingling, especially in the arms and hands
  • Abnormal reflexes of arms and legs
  • Stiff muscles or uncontrollable reflexes in the arms or legs (spasticity)
  • Abnormal curve in the spine (scoliosis)
  • Loss of muscle in the arms and legs
  • Loss of bowel or bladder control

Diagnosing Syringomyelia

Doctors will watch for signs of syringomyelia if your child has one of the conditions that sometimes cause it.

Your child’s doctor may do these tests:

  • A neurological exam to find out if your child has lost any ability to move or feel due to pressure on the spine. The doctor also checks your child’s thinking, balance and reflexes.
  • An MRI (magnetic resonance imaging) scan of your child’s spine to look for the cyst.

Treating Syringomyelia

Treatment focuses on finding the cause of the cyst and fixing the underlying problem. Your child’s care depends on what has caused their syringomyelia. Treatment may involve draining the cyst.

Learn more about how we treat these related conditions:

  • Your child will need regular check-ups throughout life. Your doctor will look for new symptoms and check that any existing symptoms are not getting worse.

    Our Neurodevelopmental team can help if your child’s cyst or a related condition causes problems with learning, emotions or behavior. Doctors, nurses, social workers and other specialists work together to meet your child’s needs. We also help you find resources in your community.

    Depending on your child’s condition, they also may benefit from:

Contact Us

  • If you would like an appointment, ask your child’s primary care provider for a referral.
  • If you have a referral, call 206-987-2016 or 844-935-3467 (toll free).
  • Providers, see how to refer a patient.
  • If you have any questions, please contact us at 206-987-2016 or 844-935-3467 (toll free).