Cerebral Cavernous Malformation (Pediatric)

Cerebral cavernous malformations (CCMs), are also known as cavernous angiomas, and cavernomas. Cavernous angiomas are made of the smallest blood vessels, called capillaries. They resemble mulberries and have very thin walls compared with other blood vessels. Blood moves through them very slowly. The thin vessel walls can be leaky and can allow blood into the surrounding brain or spinal cord tissue. It is believed that about one in every 500 people have a cavernous angioma, but most people never have symptoms. Cavernous malformations occur in the brain, and less frequently in the spinal cord. 

Most CCMs occur as a single lesion, these are considered sporadic lesions. Generally, those affected by the sporadic form of the illness have only one malformation or lesion. The sporadic form of the illness is not passed down through families. In contrast, CCMs can also be genetic. The genetic form of the illness is often associated with multiple lesions. A diagnosis of the inherited form of CCM can be confirmed by genetic testing.  

Cerebral Cavernous Malformation Symptoms

One in 500 individuals have at least one CCM in their brain, with approximately 25% experiencing no symptoms. Others, however, may experience:

  • Headaches
  • Muscle weakness
  • Loss of sensation
  • Hearing or vision deficiencies
  • Difficulty speaking
  • Seizures 

Cavernous angiomas are prone to chronic oozing of blood in the area of the lesion. This is what gives their typical appearance on MRI.  Oozing is different from the more significant “overt” hemorrhage or bleed. An overt hemorrhage is new bleeding in or around the cavernous angioma and is often associated with new symptoms.  Symptomatic hemorrhage is the most serious complication of cavernous angioma and is the most common reason for surgery. The hemorrhage may cause new symptoms or an increase in symptoms. The specific symptoms a person experiences will depend on the location and size of the cavernous angioma and the amount of blood that has leaked outside the lesion. 

Cerebral Cavernous Malformation Diagnosis and Treatment

CCMs are often diagnosed via MRI when an individual becomes symptomatic; however, sometimes they are an “incidental” finding on an MRI. Patients who have been diagnosed with CCMs are often scheduled for follow up MRIs either on a regular schedule or when there are changes in symptoms. There are many treatments currently under investigation for this illness and there is hope for real treatments and a cure on the horizon. Nevertheless, currently the only treatment for cavernous angioma is surgery. 

Special Issues for Children with a Cavernous Angioma

Young children may not be able to tell you about symptoms; this can be a challenge for parents trying to manage this illness. Additionally, it can also be difficult to determine what are normal developmental issues, and what could be related to a change in a CCM. Parents should contact their child’s primary care provider if there is a change that they are concerned about.

Telling your child about his or her diagnosis can be emotional and can require a period of adjustment for your child. Try to explain in simple terms that are age-appropriate. Having a pediatric mental health professional ready to help can make this easier. A mental health professional can also help if a child with hemorrhage or surgery-related deficits struggles with peer relationships, restrictions on activities, or academics. You will need to explain your child’s illness many times to many professionals including school staff, as well as friends and other caregivers. Good support from other parents in the Angioma Alliance community or your local special needs community can be helpful for you.

Cerebral Cavernous Malformation Treatment at Michigan Medicine

C.S. Mott Children’s Hospital offers one of the nation’s leading treatment programs for infants, children and adolescents with neurological problems (problems affecting the nervous system). As one of only a few places in the country that offers comprehensive expertise treating the most complex cerebrovascular disorders with advanced microsurgery, and minimally invasive endovascular treatment options, Michigan Medicine is leading the way in patient safety, patient satisfaction and quality outcomes.  

Led by pediatric neurologists and pediatric neurosurgeons, specialists at Mott use a team-based approach to care to treat children with brain and neurological conditions. Together with colleagues in many other pediatric specialties, we provide our patients and their families with individualized treatment plans. 

Schedule an appointment at 734-936-4179.