Cavernous Malformation (Cavernoma)

What are the signs and symptoms of a cavernous malformation?

Many children with cavernous malformations never experience any symptoms. But a leaking or bleeding cavernous malformation can cause symptoms depending on where the damage to the blood vessel (lesion) is. Symptoms of cavernous malformations may include:

• Headaches
• Seizures (most common symptom)
• Trouble speaking
• Vision problems
• Weakness or numbness in the arms or legs

How do we diagnose cavernous malformations?

In most cases, our experts diagnose a cavernous malformation when a child experiences signs and symptoms of the condition. A visit with one of our pediatric neurologists may include:

• Review of your child’s medical history
• Physical exam
• Order for a magnetic resonance imaging (MRI) scan

An MRI is the best test for diagnosing cavernous malformations. We use a high-resolution type of MRI (called susceptibility-weighted imaging) to find small lesions and signs of previous bleeding. However, sometimes doctors find a cavernous malformation by accident when a child has a brain scan for another reason. 

What can I expect from testing for a cavernous malformation?

MRI scans to look for a cavernous malformation can take anywhere from 20 to 90 minutes. A radiologist reviews the scan to look for one or more cavernous malformations. They also look for signs of recent bleeding. Cavernous malformations often look like "popcorn-shaped" spots in MRI results.

If our experts see multiple cavernous malformations in your child’s MRI results, we may recommend genetic testing and family screening.

How do we treat cavernous malformations?

Our pediatric neurology team develops an individual treatment plan based on your child’s unique diagnosis, including:

• Bleeding history
• Lesion location
• Neurologic symptoms
• Overall health

We monitor all patients with cavernous malformations with periodic exams and MRI scans. Some children never have symptoms. Others may need care to help manage their symptoms.

If we need to treat your child’s cavernous malformation, their personalized treatment plan may include:

• Medications to control seizures, headaches or other neurological symptoms
• Surgery to remove lesions, especially if they bleed, grow or cause seizures that don’t respond to medication
• Stereotactic radiosurgery, a type of focused radiation therapy used when malformations are hard to reach or when surgery is too risky
• Physical therapy, occupational therapy and speech-language therapy to help your child regain or improve function

Long-term outlook for children with a cavernous malformation

Most children with cavernous malformation do very well and stay healthy over time. Many never experience symptoms and simply need regular checkups and imaging scans to monitor the condition.

When a child needs treatment, surgery is usually safe and effective. Most children recover well and experience fewer symptoms afterward. Except in rare cases, a child with a cavernous malformation can expect to live just as long as a child without the condition.

Living with a cavernous malformation

Children with cavernous malformations typically lead active, healthy lives. Living with a cavernous malformation may involve:

• Managing or treating symptoms
• Regular neurology visits and MRI scans
• Watching for new symptoms

Why choose us to treat cavernous malformations?

Our comprehensive Pediatric Neuroscience Institute delivers personalized care from experts who specialize in treating complex neurological conditions in children. At Children’s Hospital Colorado, your child gets:

• A complete care team: Our multidisciplinary team includes pediatric neurosurgeons, neuropsychologists, genetic counselors, nurse care coordinators, social workers and family health navigators. We also work closely with neuroradiologists, stroke specialists and epilepsy experts to coordinate care and treatment.
• Dedicated pediatric specialists: We offer one of the Rocky Mountain region’s most comprehensive pediatric neurosurgery programs. Our pediatric neurosurgeons have over 60 years of combined experience caring exclusively for children.
• Recognized expertise: U.S. News & World Report consistently ranks our neurology and neurosurgery programs among the top hospitals in the nation.

Helpful resources

• Alliance to Cure Cavernous Malformation
• Epilepsy Foundation