child looking at xray

Chiari Malformation Program

Helping kids and young adults who have been diagnosed with chiari malformation.

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About us

Chiari malformation can cause balance problems, trouble with coordination, headaches, and other symptoms. Our team is committed to working with you and your child, helping you understand the condition and all possible treatment options. We provide evaluations, individualized treatment plans, and ongoing support to ensure the best possible outcomes.

Girl with hands on spine

Conditions we treat

Surgical evaluations are offered for the following conditions:

  • Chiari 1 malformation
  • Complex Chiari malformation
  • Ehlers Danlos Syndrome
  • Basilar Invagination
  • For patients with headaches who are not surgical candidates, or choose not to pursue surgery, we can refer to the Headache Program.

What sets us apart

World-renowned multidisciplinary team

Each patient receives a personalized evaluation by a board-certified pediatric neurosurgeon with internationally recognized expertise in Chiari disorders. In the event of a diagnosis, a care plan will be determined by our team of experts who will also perform careful follow-ups on each patient post-surgery. Our team can also provide electronic reviews of cases sent to us for a second opinion. We work closely with pediatric orthopedics and an evaluation with a pediatric orthopedic spine specialist can be arranged in cases where scoliosis is a part of the Chiari 1 malformation.

Whether this is the initial diagnosis or a case review for a second opinion, you can rest assured knowing that you are getting the best treatment available.

During your visit

  • Prior to your child's appointment, you will be contacted by our team to make sure any imaging you have obtained is available and to answer any questions you may have. Please bring copies or digital files of any imaging studies that have been obtained from outside hospitals with you to your appointment.
  • During your visit, you will be asked to complete a medical history form and a patient-reported quality of life form (the SF-10 Health Survey). These are brief, but please be prepared to provide some specific information, such as medication types and doses.
  • You will also be asked to participate in a study examining the genetics of Chiari 1 malformation. If you agree to participate, a study coordinator will discuss this effort, answer any questions you might have, and collect a small sample of blood from the patient.
  • Your one-hour visit will include evaluations from multiple members of our multidisciplinary team, and you can expect to spend 20-30 minutes in face-to-face conversation with the doctor. We know it's important to get the time you need to get your questions answered.  

Research and innovation

Our program is committed to research and evidence-based care to ensure excellent outcomes, which we publish regularly. Our program participates in scientific studies examining the genetics of Chiari 1 malformation and publishes studies and clinical trial results. A few examples include:

 

Frequently asked questions

Common questions about Chiari malformation.

Doctors are not sure. In some cases, patients are born with it, in other it develops over time.
Yes, but it is unlikely. Most Chiari malformations stay the same over many years. 
We have seen Chiari malformations within several members of the same family, but it is uncommon. It is usually not passed on to children.

Helpful information can be found at the Chiari Syringomyelia Foundation and Conquer Chiari websites.

Featured locations

Primary Children's Neurosurgery Clinic - Salt Lake City

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