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Diagnosis and Management of Cerebral Cavernous Malformation (CCM)

Diagnosing CCM

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.

CCM patient Sherry Kedra When a blood vessel bled in her brain, Ohio resident Sherry Kedra was determined to find answers. Online research led Sherry to the University of Chicago Medicine for CCM care.
» Read her story.

Individually Focused Care and Follow-Up

After 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:

  • Lesion growth
  • Bleeding
  • Symptoms from individual lesions
  • Lesion burden (count and volume of lesions)
  • New lesions and tumors
  • 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

Management of CCM

At the University of Chicago Medicine, our neurovascular care team specializes in developing comprehensive surgical and non-surgical management plans for CCM. MRI scans may be repeated to help assess the management strategy.

When possible, our experts use medication to manage CCM, closely monitoring lesions and symptoms to assess effectiveness. Medication is commonly used to treat or manage certain symptoms, such as headaches and seizures. However, certain indications may warrant surgery.

Expert Care for Seizures Associated with CCM

Adults and children who have seizures associated with CCM can also benefit from the leading expertise of neurologists in our two nationally classified Level 4 epilepsy centers: the Comprehensive Epilepsy Center at the University of Chicago Medicine and the Pediatric Epilepsy Center at the University of Chicago Medicine Comer Children's Hospital.

CCM patient Steven Steinhilber Steven Steinhilber didn't know he had CCM until he began to pass out and have seizures. After undergoing surgery to remove the CCM lesion, Steven is seizure-free.
» Read his story.

Surgical Management Options for CCM Lesions

When medication is not effective, our integrated physician team offers traditional and minimally invasive surgical management options, including neurointerventional techniques.

Surgery is considered when a lesion has bled, including lesions located in vulnerable areas of the brain. Some lesions are deemed inoperable, because of surgical risks in certain areas of the brain. Our leading expert, Issam A. Awad, MD, has extensive experience with successful surgeries in the most critical areas of the brain. He uses several advanced surgical adjuncts, such as functional MRI, intraoperative brain mapping and image guidance to enhance the safety and effectiveness of those procedures.

Surgery may be recommended when a lesion is located in an area where it can safely be removed and:

  • Recent bleeding is detected.
  • The lesion is growing.
  • Certain types of seizure activity occurs.
  • Symptoms are disabling and cannot be managed with medication.
  • Consequences of hemorrhage outweigh the risks of surgery, including lesions in the brain stem and spinal cord that have already bled and caused disabling symptoms.

Types of Surgery for CCM

Whenever possible, our skilled neurosurgeons at the University of Chicago Medicine perform minimally invasive surgical techniques that offer fewer risks and shorter recovery times than traditional procedures. With image-guided surgical navigation, our experts are able to safely perform microsurgical techniques to remove CCM lesions from the brain or spinal cord with minimal damage to surrounding tissue.

Craniotomy, a procedure performed under general anesthesia, involves opening the skull with image guidance and expert precision to surgically remove the CCM lesion.

Laminectomy is a surgical procedure that requires removing part of the vertebral bone (the lamina) to remove a CCM lesion from the spinal cord. Whenever possible, our neurosurgeons perform minimally invasive laminectomy.

Evidence-Based CCM Care Guidelines

University of Chicago physicians partnered with other internationally known CCM experts to compile comprehensive evidence-based CCM care guidelines (PDF) for the Angioma Alliance, a patient-directed network dedicated to improving the lives of those affected by cavernous angioma.

More Information

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Kristina Piedad, RN

Transfer Center
In case of emergency, physicians should call the Transfer Center to coordinate transfer to the appropriate service at the University of Chicago Medicine.