Cerebral Cavernous Malformations (CCMs)

Symptoms of CCMs include:

• Seizures
• Headaches
• Weakness or paralysis in arms or legs
• Vision problems
• Hearing problems
• Speech problems
• Balance problems
• Thinking, memory and attention problems

Sometimes symptoms happen when a CCM bleeds because bleeding can:

• Put pressure on nearby tissue
• Irritate the tissue
• Prevent oxygen-rich blood from getting to brain cells that need it

The location, number and size of the CCMs may affect your child’s symptoms. Symptoms may come on slowly or quickly. They may come and go as the CCM bleeds and then the body reabsorbs the blood.

Some children have bleeding that causes symptoms just once. Some have frequent rebleeding. Their symptoms come back or get worse.

The best way to see and diagnose a CCM is with MRI. The cluster of abnormal blood vessels (called a lesion) and substances left behind from repeated bleeds may look like tiny popcorn or a raspberry on the scan.

Doctors may repeat MRIs over time to look for changes, like:

• A new lesion
• A change in the size of a lesion
• Recent bleeding

Some children with CCMs have only 1 lesion. Other children have many. If your child has CCM symptoms and more than 1 lesion, the doctor may run tests to help pinpoint which lesion is causing the symptoms.

If your child has seizures, Seattle Children’s has a great deal of experience using imaging to diagnose epilepsy and find out where in the brain a seizure begins.

About 90% of children with CCMs have no family history of the condition. These cases are called sporadic. Most of these children have only 1 lesion.

In 10% of people with CCMs, the lesions are caused by gene changes (variants) that can be passed down in families. People with familial CCM have a 50% chance of passing the condition on to each of their children. They are more likely to have more than 1 lesion.

Researchers have found some of the genes that cause familial CCMs. Seattle Children’s Vascular Anomalies Program has created a gene panel that helps identify the exact genetic cause of vascular malformations in some children. Our neurologists and geneticists work together to diagnose familial CCM. They can explain and perform genetic tests and counsel you about what the results mean for your family.

Before deciding if surgery is best for your child, our neurosurgeons consider factors such as:

• If your child’s lesion is getting bigger
• How likely your child’s CCM is to bleed
• Whether your child has repeated seizures that are not controlled with medicines
• If doctors can tell which lesion is causing your child’s symptoms (if your child has more than 1 lesion)
• The location of your child’s CCM
• Whether neurosurgeons can safely remove the lesion
• If nearby healthy tissue may be harmed by surgery

Before surgery, our epilepsy experts use advanced techniques to pinpoint the CCM and map the brain. These methods include MRI (magnetic resonance imaging), fMRI (functional magnetic resonance imaging) and intracranial EEG (iEEG) monitoring. They help us:

• Decide whether to recommend surgery
• Tell which areas to avoid during surgery to reduce the risk of problems with talking, moving or other functions

We use fMRI to take pictures of your child’s brain at work. It is like an MRI scan. But instead of just looking at the physical parts (structures) of your child’s brain, we look at the parts involved in specific activities.

For some children, we use intracranial EEG to map the brain and find where seizures start. In iEEG, doctors place electrodes inside a child’s skull on many parts of their brain. Learn more about intracranial EEG monitoring to diagnose and treat seizures.

In some cases, the best way to reach the CCM is to remove a piece of bone from your child’s skull and cut through the tough membrane that protects their brain. This is called craniotomy. Surgeons use a microscope to see fine details of the CCM and remove it. Then they close the membrane and skull.

If neurosurgeons cannot safely reach the lesion with craniotomy, laser ablation surgery may be an option for your child.

For some children, laser ablation (LAY-zer ab-LAY-shun) surgery is an option with fewer side effects than traditional (open) surgery. This minimally invasive procedure uses light to heat and destroy unwanted cells. It offers the chance to live a seizure-free life for some kids who have run out of treatment options.

Seattle Children’s is among a handful of pediatric hospitals in the country — and the only in our region — to offer laser ablation surgery for epilepsy.

Read more about laser ablation surgery.

As your child gets older, we prepare them to take on a greater role in their own care. When your child is ready, we connect them with experts who can meet their adult healthcare needs.

Our Pediatric Vascular Neurology Program has the expertise and special equipment to treat babies, children, teens and young adults. We see people who:

• Have symptoms that suggest they might have a CCM
• Need assessment because imaging studies revealed 1 or more CCMs
• Have been diagnosed with a CCM and referred to Seattle Children’s for surgery or other treatment
• Had treatment somewhere else for CCMs and want to change doctors or want a 2nd opinion about the best treatment

We take care of your child over the long term. During follow-up care, we monitor your child’s health to help them have the best quality of life.

• Dealing with a CCM can be stressful. Social workers, child life specialists and many others provide support for you and your child. We connect you to community resources and support groups.
• As your child grows, we meet their changing needs, whether they are a young child going back to school after brain surgery or a teen taking on more responsibility for their health.
• At Seattle Children’s, we work with children and families from around the Northwest and beyond. We can help with financial counseling, schooling, housing, transportation, interpreter services and spiritual care. Read about our services for patients and families.