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 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.

What causes syringomyelia?

Often, a cyst forms because of a condition that changes the normal flow of . 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.

Why choose Seattle Children’s for your child’s syringomyelia care?

Damage to the spinal cord can worsen quickly. Our team has the skills, experience and special equipment to diagnose and treat your child for syringomyelia and the conditions that cause it.

  • Your child will be in the hands of experts.  Dr. Richard G. Ellenbogen serves on the board of the nonprofit Chiari & Syringomyelia Foundation. He has treated more than 1,000 patients with syringomyelia or Chiari malformations.
  • Seattle Children’s neurosurgery team is among the most experienced in the nation. We perform many more neurosurgeries than any other children’s hospital in our region. More cases mean greater expertise and a sharper ability to decide if surgery is even needed. That adds up to better outcomes.
  • We offer the most advanced diagnosis and treatments. For many children,  is part of making an accurate diagnosis. Our doctors have the equipment and expertise to use a special MRI () that shows how flows in and around the brain.
  • Seattle Children’s is the only hospital in the region with coverage 24 hours a day, 7 days a week by a pediatric neurosurgeon.
  • In our Neurodevelopmental Clinic, experts in many medical areas work together to care for your child if syringomyelia or a related condition causes problems in their thinking, balance, learning or emotions. We work with children long-term to help them reach their full potential.
  • Multidisciplinary, comprehensive care

    We coordinate care so your child gets treated for any related conditions. 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: 

  • Research to improve outcomes
    • Dr. Richard G. Ellenbogen uses MRI (magnetic resonance imaging) to better understand the flow of CSF around the brain and spinal cord.
    • Dr. Ghayda Mirzaa studies brain tissue from children who have had surgery to learn how  might affect the way the back of the brain develops. Her research in the lab may help tell if spinal cysts are different in children who also have Chiari malformations.
    • In the Hydrocephalus Clinical Research Network, we partner with other leading children’s hospitals on research studies to improve care for fluid buildup in the brain.
    • Your child may have access to research studies of promising new treatments. These are called . They can be especially important if your child’s condition is not well controlled with standard medicines or surgeries.

    Learn more about Seattle Children’s neurosciences research.

  • Support for your whole family
    • Learning that your child has syringomyelia can be stressful for the whole family. During visits, we take time to explain your child’s condition. We help you fully understand your treatment options so you can make choices that are best for your child.
    • Our doctors, nurses, and help your child and your family through the challenges of their condition. We connect you to community resources and support groups.
    • We work with families from 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.
  • Specialists in caring for kids and teens
    • 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. Our team is specially trained to understand and meet your child’s needs.
    • Our doctors 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 is safest for your child.

What are the symptoms of syringomyelia?

Common symptoms of syringomyelia include:

  • Weakness
  • Pain
  • Decreased feeling (numbness)
  • 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

How is syringomyelia diagnosed?

Doctors will watch for signs of syringomyelia if your child has 1 of the conditions that may cause it.

Your child’s doctor may do these tests:

  •  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  scan of your child’s spine to look for the cyst.
  • MRI CSF flow study to see how CSF moves in and around your child's brain. Seattle Children’s has special computer software to make images. Our doctors are experienced in interpreting these images. Cine-MRI helps doctors decide who may need surgery and which type would help most.

Treating Syringomyelia

Your child’s care depends on the cause of their syringomyelia. Treatment may involve draining the cyst using a tube that drains fluid to other parts of the body (shunt).

We focus on finding the cause of your child’s cyst and fixing that problem. Learn more about how we treat these related conditions:

Ongoing care

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 to refer you. If you have a referral, call 206-987-2016 to make an appointment.

If you have questions, contact us at 206-987-2016 or  844-935-3467 (toll free).

Providers, see how to refer a patient.

Paying for Care

Learn about paying for care at Seattle Children’s, including insurance coverage, billing and financial assistance.

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