Moyamoya Program | Patient Resources

You can help prepare for a visit to the Moyamoya Program by gathering your child’s images, medical records and a written medical history before your child’s visit.

In moyamoya, the walls of the internal carotid arteries - the vessels that supply blood to important areas of the brain - become thickened and narrowed. This causes the flow of oxygen-rich blood to the child's brain to gradually slow down making patients more prone to strokes or other ischemic symptoms. MRIs and diagnostic angiograms are typically ordered for patients to confirm diagnosis and plan for surgery. 

What to Expect

As the parent or guardian, we ask that you send over your child’s medical records, imaging and imaging reports to be reviewed by the team. Images can be sent over electronically or via mail. The MM Program’s coordinator will walk each family through the intake process.

  • Phone consult - Our program coordinator will schedule the call with Dr. Smith in order to provide an overview of the condition and treatment plan, as well as to discuss the child’s follow up plan.

  • Scheduling surgery - The family will be contacted to schedule a date for surgery, as well as any other necessary appointments. Once the surgery is scheduled, the parent or guardian will receive an email from the coordinator detailing the times, dates and locations of your child’s appointments. 

  • Diagnostic imaging or testing - If pre-op imaging is needed, you will be made aware of this in the surgical confirmation letter and additional information will be provided.

  • Consultation and pre-op visit – An in person meeting with the doctors will take place in the clinic. The pre-operative visit will provide all details on how to prepare for surgery and what to expect before, during and after the procedure. There will also be a consult with the anesthesiologist and any relevant providers who will address any questions or concerns. 

  • Surgery – Patients are admitted the night before and usually remain in the hospital for 3-5 days in total. Families are encouraged to visit their child during this time and temporary accommodation can be made in Boston while the child is in-patient. 

  • Post-op and follow up -  An in person appointment or telephone conference call will be scheduled for 4-6 weeks after discharge with our nurse practitioner.  Traditional follow-up after surgery includes an MRI/MRA six months after surgery, an angiogram one year after surgery, and annual MRI/MRAs for 5 years, after which biannual MRI/MRAs.

 

Please read our Patient Stories to learn more about the patient experience. 

 

Watch our videos

To learn more about moyamoya and its treatment at Boston Children's Hospital, watch our videos.

External resources

These external links offer additional information about moyamoya.