Cerebral Cavernous Malformations

Cavernous malformations, also called cavernous angiomas and cavernomas, are abnormal clusters of dilated blood vessels. The walls of these vessels are generally weak and are prone to leaking blood. These malformations can cause seizures, stroke symptoms, hemorrhages and headache. They can also remain asymptomatic and not require any treatment.

Ranging in size from microscopic to inches in diameter, cavernous malformations can be located anywhere in the body including the liver, rectum, kidney, eyes, nerves, spinal cord and brain. Those that develop in the brain or spinal cord, called cerebral cavernous malformations (CCM), are the most serious.

About one in 200 people have a cavernous malformation, affecting men and women almost equally and occurring in people of all races, sexes and ages. In some cases, these malformations may run in families and are inherited.

UCSF is designated a Clinical Center of Excellence in Cerebral Cavernous Malformation (CCM) by the Angioma Alliance. UCSF is the only institution in California, and one of only six in the nation, to earn this designation.

 

Coronal MRI of a cavernous malformation of the brainstem in the right pons.

 

 

Diagnosis and Treatment

Due to the rarity and complexity of CCM, treatment requires coordination among multiple medical specialists. Led by Ethan Winkler, MD, PhD, and Nerissa Ko, MD, the UCSF Clinical Center of Excellence in Cerebral Cavernous Malformations includes a coordinated team of nationally recognized and specially trained physician experts from multiple specialties. Team members all have extensive experience in CCM and take a comprehensive approach to the screening, diagnosis and treatment of the condition. CCM is usually diagnosed by MRI and cerebral angiogram, and treatment with surgery can be curative. UCSF is one of the highest volume referral centers for CCM in the Western United States, giving our team vast experience with this disease.

Team
Referrals and Scheduling

For Adult Patients

Neurosurgery Clinic

400 Parnassus Ave, 8th Floor
San Francisco, CA 94143
Phone: (415) 353-7500
Fax: (415) 353-2889

Neurology Clinic

400 Parnassus Ave, 8th Floor
San Francisco, CA 94143
Phone: (415) 353-2273
Fax: (415) 353-2898

For Pediatric Patients

To refer a pediatric patient, please call the Access Center at UCSF Benioff Children’s Hospital. The Access Center is a single point of access for all inpatient and outpatient pediatric services, including pediatric cerebrovascular care. Further instructions will be provided over the phone. 

Phone: (877) 822-4453 or 877-UC-CHILD
Inpatient Fax: (415) 353-1323
Outpatient Fax: (415) 353-4485

If you are referring a pediatric patient who resides outside the United States, please call International Services at UCSF Benioff Children’s Hospital:

Phone: (415) 353-8489
Fax: (415) 353-8603
Email: [email protected]

 

Preparing for Your Appointment

What to Bring to Your Appointment

  • 2 forms of identification, including insurance card(s) for primary and secondary insurance plans.
  • Copay, if required. We accept cash, check, and credit cards.
  • Completed New Patient Questionnaire form (PDF)
  • MRI/CD disks, xrays (if not completed at UCSF facility at Parnassus, Mt Zion or China Basin)
  • IMPORTANT: If the Radiology facility has informed you that they have sent the MRI/CD disk to us, please call our patient navigator at (415) 353-2529 to confirm that we are in receipt of this PRIOR to your appointment.
  • List of current medications, including over-the-counter medications and herbal medications (including dosages)
  • List of physicians to whom you would like your visit note sent (please bring addresses and fax numbers)

Please arrive 15 minutes before your appointment for the check-in process.