Brain & Spine Center
Chiari Malformation Program
The Chiari 1 Malformation Program at Primary Children’s Hospital provides care for children and young adults (up to 21 years of age) diagnosed with this common brain disorder. We are committed to working with patients and their families to help understand their diagnoses and provide a comprehensive review of potential treatment options.
About the Program
Our program includes comprehensive imagine services and personalized evaluation and comprehensive follow-up by a team of experts including:
- Pediatric Neurosurgeon
- Pediatric Orthopedic Surgeon
- Nurse Practitioner
- Rehabilitation therapists, as necessary
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, a referral to the Headache Clinic will be given.
What Sets Us Apart
World-Renowned Multidisciplinary Team
Each patient receives a comprehensive evaluation by Dr. Douglas Brockmeyer, a board-certified pediatric neurosurgeon and an internationally recognized expert in the treatment of 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.
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.
- Complex Chiari malformations in children: an analysis of preoperative risk factors for occipitocervical fusion
- Park Reeves Syringomyelia Research Consortium
- PCORI Study: Posterior Fossa Decompression Vs. Posterior Fossa Decompression with Duraplasty.
What to Expect
Appointments for Chiari consultation and evaluation can be obtained by contacting the Pediatric Neurosurgery office at (801) 662-5340. Prior to your child's appointment you will be contacted by our office 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 imagine studies that have been obtained from outside hospitals with you to you appointment.
During Your Visit
- During your visit, you will be asked to fallout 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 mediation 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.
- The initial consultation will take approximately one hour, with 20 - 30 minutes of that time in face-to-face conversation with the doctor.
- Follow-up visits and/or imaging will be schedules as necessary according to the findings of the initial visit.
Frequently Asked Questions
How does Chiari occur?
Doctors are not sure. In some cases, patients are born with it, in other it develops over time.
Can my child's Chiari get worse?
Yes, but it is unlikely. Most Chiari malformations stay the same over many years.
Is it genetic? Can it be passed on to children?
We have seen Chiari malformations within several members of the same family, but it is uncommon. It is usually not passed on to children.