Phone: 1-866-374-5495 (dedicated line for Alliance to Cure Cavernous Malformation patients. If you use this number, the Barrow’s $100 second-opinion fee will be waived. An online second-opinion form just for Alliance to Cure Cavernous Malformation members will be created shortly.)
Address: 350 West Thomas Road, Phoenix, AZ 85013
Number of Outpatient CCM appointments annually: 148
Number of Inpatient CCM patient days annually: 495. Average length of stay: 5 days
Number of CCM research publications, 2014-2019: 39
Medical Director and Cerebrovascular Surgeon: Michael Lawton, MD
Medical Co-Director: Joseph Zabramski, MD
Nurse Coordinator: Norissa Honea, PhD, RN
Vascular Neurology: Michael Waters, MD, PhD
Epileptologist: Susan T. Herman, MD
Genetic Counselor: Kim Brussow, MS, CGC
Neuroradiologist: John Karis, MD
Epilepsy Neurosurgery: Kris Smith, MD
Pediatric Neurosurgery: Ruth Bristol, MD (Phoenix Children’s)
Pediatric Neurologist: Brian Appavu, MD (Phoenix Children’s)
Summary of the Barrow Neurological Institute’s CCM Research Program
One of the primary goals of research at our institution has been to define the natural history of CCM in both its spontaneous and familial forms. Some of our earliest publications helped define the inheritance pattern and natural history of the familial form of CCM disease in the Hispanic population. Additional contributions included defining the de novo occurrence (i.e. spontaneous appearance) of new CCM lesions in both the familial and spontaneous forms of the disease, and the development of an MRI-based grading scale to help predict the risk of future bleeding episodes. We also worked to prove false the myth that pregnancy is associated with an increased risk of bleeding in women with CCM.
Early contributions also included efforts in the localization of the CCM1 gene, as well as contributions to the 2-hit model of CCM disease.
We continue to work in collaboration with other major academic centers helping to define the natural history of CCM disease, participating in the NIH sponsored Brain Vascular Malformation Consortium, and more recently in the NIH sponsored cavernous malformations with Symptomatic Hemorrhage Trial Readiness (CASH-TR) protocol.
An additional major focus of research has been defining the role of microsurgical treatment in the management of symptomatic cavernous malformations, particularly for lesions involving the brain stem and basal ganglia. Our experience has helped identify multiple safe surgical entry zones that minimize the risks of surgical resection of lesions within the brainstem and helped define the risks and benefits of surgical intervention.
We are also pursuing laboratory and clinical investigations into the potential role of the beta-blocker propranolol for the treatment of CCM disease.
The Barrow Neurological Institute will be working with Alliance to Cure Cavernous Malformation to create a patient education and support program.
Medical Provider Education
The Barrow Neurological Institute educates its providers about CCM using grand rounds, invited speakers, journal club, and dissemination of the Clinical Care Guidelines
Update on 05/04/21