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Cerebral Cavernous Malformation (CCM)

Angioma Alliance Center of Excellence

At the University of Chicago Medicine, our neurovascular care experts are leaders in the complex management of cerebral cavernous malformations (CCM). This uncommonly recognized brain condition afflicts one in 200 people, including more than 1 million Americans, according to the Angioma Alliance. Offering a depth of experience that is unique to our integrated physician team, we provide highly effective, innovative care for adults and children with CCM. Individuals and families travel from other states and countries seeking our proven expertise in CCM care.

A CCM is a cluster of weak, dilated blood vessels that form bubble-like structures called caverns. Often compared to the shape of a raspberry, the blood-filled caverns can leak and cause symptoms to occur. There are a few interchangeable terms used to describe this condition, including:

  • Cerebral cavernous malformation or CCM
  • Cavernous angioma
  • Cavernous hemangioma
  • Cavernoma
Dr. Awad with young CCM patient, Zane Smith, who traveled from England for care Issam A. Awad, MD, with 4-year-old CCM patient Zane Smith, whose family traveled from England seeking Awad's expertise.
» Read Zane's story.

CCM lesions range in size from microscopic to more than an inch wide, and may affect any region of the brain or spinal cord. A person may have one lesion or several at a time.

Lesions are often monitored closely. We also offer blood test screening for individuals at risk for genetic inheritance of this condition. Surgical management may be an option for patients with symptomatic lesions. Learn more about:

Dr. Issam A. Awad Our team is led by internationally renowned CCM expert Issam A. Awad, MD.

Our Integrated Approach to CCM Care

The University of Chicago Medicine neurovascular care team brings together experts in neurovascular surgery, neurology and medical genetics to develop innovative CCM management plans tailored to each individual's specific needs. Leveraging the combined experience of our experts, we offer an innovative, collaborative approach to CCM care. The team is comprised of highly skilled physicians and nurses with extensive training and experience in neurovascular care. Housed within a world-class academic medical center, our physician team provides definitive diagnosis and comprehensive management of CCM.

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Signs and Symptoms

Some individuals experience mild or severe CCM symptoms, while others experience none at all. Symptoms vary significantly, based on the location of the CCM lesion, the strength or weakness of the blood vessel walls, and how much bleeding occurs. Blood may pool inside the vessels or leak into surrounding brain tissue, triggering symptoms such as:

  • Seizures
  • Bleeding in the brain
  • Focal neurologic symptoms, such as weakness or paralysis
  • Headaches

A CCM lesion may shrink or grow as it bleeds and reabsorbs blood. As the size changes, the type and severity of symptoms may change. While a lesion may be present in childhood, most people with CCM do not become symptomatic until adulthood. Some asymptomatic lesions are incidentally discovered when a patient has brain imaging for an unrelated reason, such as a CT or MRI scan after a concussion or for evaluation of migraine symptoms.

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Types of CCM

Whether your CCM is familial or sporadic, our team has the experience and expertise to provide the best care possible.

CCM patients Sherry and Ross Kedra with Dr. Awad Online research led Ohio resident Sherry Kedra to the University of Chicago Medicine for CCM care. Since genetic testing revealed that her son inherited the mutation, our experts are monitoring them both on an ongoing basis.
» Read their story.

Familial Cavernous Angioma

In many cases, cavernous angiomas are genetically inherited. If one of your parents has CCM, there is a 50 percent chance that you will inherit the condition. This genetic form of CCM, called familial cavernous angioma (or familial CCM), is more commonly associated with multiple lesions throughout the brain.

At the University of Chicago Medicine, physicians with expertise in neurovascular care and human genetics work together to provide comprehensive diagnostic testing for familial CCM. Our team specializes in the diagnosis and management of all three hereditary forms of this condition: CCM1, CCM2 and CCM3.

Exceptional multiplicity of brain lesions in CCM3 disease

CCM3 is the least common -- and most aggressive -- familial form. Less than 2 percent of CCM cases in the U.S. are known to carry the CCM3 mutation. Compared to other forms, CCM3 causes earlier onset of symptoms, higher rates of neurologic complications and more lesions. About half of CCM3 cases require brain surgery in childhood due to serious bleeds. The CCM clinic at the University of Chicago Medicine has evaluated more CCM3 cases than any other group in the world. Our researchers led a study that defines CCM3 and published an article that informs preclinical therapeutic testing, clinical counseling, and the design of clinical trials.

Researchers have associated familial cavernous angioma with at least three genes, including a specific CCM1 gene mutation inherited among Hispanic Americans of Mexican descent, and another mutation in CCM2 gene inherited among families with Ashkenazi Jewish heritage. However, familial CCM involving all three genes occurs in families all around the world.

Sporadic Cavernous Angioma

Most people with CCM have sporadic cavernous angioma (sporadic CCM), which is not genetically inherited. These individuals are more likely to have a single lesion, which may be present at birth or form in childhood or adulthood.

Sporadic cavernous angiomas are usually associated with a venous angioma, which is another type of vascular anomaly that can develop in the brain. Venous angiomas, also called venous malformations or developmental venous anomalies, are typically harmless unless they trigger the development of CCM lesions.

Radiation exposure has been known to cause CCM mutations, particularly after cranial irradiation for childhood cancers.

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Diagnosing and Managing CCM

At the University of Chicago Medicine, our experts understand that effective CCM management starts with definitive diagnosis. Our highly skilled specialists collaborate to provide the most comprehensive care possible for people with CCM.

» Learn more about our team's unmatched expertise in the diagnosis and management of cavernous angioma.

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CCM Research

Our team of experts, led by Issam A. Awad, MD, conducts leading research to advance the understanding of CCM and to develop the most innovative and effective management strategies possible.

» Learn more about groundbreaking CCM research at the University of Chicago Medicine.

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Request an Appointment

For more information or to make an appointment, call (773) 702-4452.

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Preparing for Your Appointment

On the day of your appointment, you'll need to bring all brain imaging scans that you currently have, including the written report and the CD of images for each. Also, be prepared to answer questions about your symptoms and any previous treatment.

If you are traveling from out of town, learn more about hotel accommodations and discounts offered through the University of Chicago Preferred Hotels Program.

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Patient Resources

Access a broad range of helpful resources for individuals and families affected by CCM on the Angioma Alliance website.

» Evidence-Based CCM Care Guidelines (PDF)
University of Chicago physicians worked with other internationally known CCM experts to compile these comprehensive care guidelines.

The University of Chicago Medicine and Comer Children's Hospital provide links to other organizations as a service to our site visitors. We are not responsible for information or services provided on other websites.

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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.