CCM Diagnosis

Diagnosing Cerebral Cavernous Malformation

Cavernous angiomas usually are not detected until a person becomes symptomatic. At the University of Chicago Medicine, our experts have unmatched experience in the definitive diagnosis of CCM. Our team of specialists will conduct a comprehensive diagnostic evaluation, including:

• A thorough assessment of symptoms and medical history
• Advanced magnetic resonance imaging (MRI) techniques
• Assessment of the need for further imaging and other consultations
• Blood testing to screen for familial CCM in individuals at risk for genetic inheritance

Our physician experts developed a sophisticated brain MRI protocol designed specifically for enhanced CCM visualization. For the same cost as conventional MRI scans performed at other institutions, we use enhanced clinical imaging with the latest FDA-approved sequences, including high-field, susceptibility weighted imaging and protocoled sequences optimized for CCM. Using these advanced imaging techniques enables us to detect CCM lesions at much smaller sizes compared to traditional MRI. Additionally, with enhanced visualization, our team can observe subtle features within lesions. Pediatric sedation and anesthesia teams are available to assist in the imaging of younger children.

MRI is the most reliable imaging technique for CCM diagnosis. The condition may go undetected with other imaging methods. Before MRI was widely used, people with CCM were commonly misdiagnosed with multiple sclerosis (MS) or a seizure disorder, partially because the lesion was not detected on imaging scans.

Individually Focused Care and Follow-Up

After an initial diagnosis of CCM, patients are scheduled for follow-up appointments with our team for ongoing monitoring, in addition to assessment of new symptoms if they occur. Some patients may receive additional screening at their appointment if warranted, such as an internal auditory canal MRI or an X-ray of the spine. For example, we may perform these procedures for patients with CCM3, because they are prone to developing certain brain tumors and scoliosis.

Throughout the year, our team remains available to our patients and their primary care physicians to answer any questions and address any concerns that may arise between appointments.

We monitor closely for:

• Bleeding 
• Closer follow-up of lesions during pregnancy (coordination with high-risk obstetrics and medical genetics) 
• Coordination of care and follow-up for patients requiring blood thinners for other medical conditions, which could cause CCM lesions to bleed 
• Count and volume of lesions
• Lesion growth
• New lesions and tumors
• Symptoms from individual lesions