Conditions

Cerebral Cavernous Malformations (CCMs)

What is a cerebral cavernous malformation (CCM)?

Cavernous malformations are tightly packed clusters of tiny blood vessels () with walls that are thinner, weaker and less elastic than normal. The capillary walls stretch out easily and do not return to their normal shape and size. Instead, they bulge, forming “caverns,” or pockets, that fill with slow-moving blood. This condition is sometimes called other names, such as cavernous hemangioma or cavernoma.

When a cluster of blood vessels forms in the brain, it is called a cerebral cavernous malformation (CCM). Most happen in the upper part of the brain (cortex). They also may form in the , the brain’s covering (),  or other parts of the body.

A cavernous malformation may be present at birth (congenital) or form after birth. Most people with a CCM never have symptoms or related health problems. Many people never know they have a CCM. But if a CCM bleeds, it may cause headaches, or lead to .

Why choose Seattle Children’s for your child’s cerebral cavernous malformation (CCM) care?

Each year Seattle Children’s treats many babies, children and young adults with CCMs. Experts in our Pediatric Vascular Neurology Program work as a team to care for your child from diagnosis to surgery to long-term follow-up. We also provide second opinions.

The program director, Dr. Catherine Amlie-Lefond, is a pediatric and national leader in this field. Seattle Children’s is the only children’s hospital in our WAMI region with a program focused on children who have problems that affect the brain’s blood flow and vessels. WAMI includes Washington, Alaska, Montana and Idaho.

A CCM may cause no health problems, or it may cause serious symptoms. Our doctors are expert at finding if your child’s CCM needs treatment and deciding which treatment is best. We explain your child’s condition and answer your questions, so you know what is happening and what to expect.

If your child needs neurosurgery, Dr. Jeffrey G. Ojemann and Dr. Hannah Goldstein are skilled and experienced in performing procedures for CCMs. Our neurosurgeons use advanced neuroimaging like fMRI (functional magnetic resonance imaging) to map brain function, so your child’s surgery is as safe as possible.

Each child with a CCM is unique. Pediatric experts in Neurosurgery and Neurology will care for your child. Based on your child’s needs, your team may include specialists from Neurocritical Care, Neuropsychology, Rehabilitation Medicine, Ophthalmology, Social Work and other areas. For children with seizures — the most common symptom of CCMs — Seattle Children’s has the largest pediatric Epilepsy Program on the West Coast.

In some children, the CCM is caused by changes (variants) that can be passed down in families. Our neurologists and geneticists work together to diagnose familial CCM. Identifying the precise genetic cause of your child’s CCM may expand their treatment options.

  • Care from birth through young adulthood

    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 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.

  • Support for your whole family
    • 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.

What are the symptoms of a cerebral cavernous malformation (CCM)?

Cavernous malformations usually cause symptoms only if they form in the brain or spinal cord. Even in these locations, symptoms are not common.

  • General symptoms

    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
  • How bleeding can cause symptoms

    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.

Diagnosing Cerebral Cavernous Malformations (CCM)

Often, a CCM is diagnosed only because it shows up on imaging scans done for some other reason — not because of a health problem related to the CCM. Other times, a CCM causes symptoms that send a child to the doctor.

Experts in our Pediatric Vascular Neurology Program will ask about your child’s medical history and if other family members have had a CCM. We’ll examine your child. Your child may need an  or other . For some families, is helpful.

  • MRI

    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
  • Tests to find the problem lesion

    Some children with CCMs have only 1 . 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.

  • Genetic tests

    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 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.

Treating Cerebral Cavernous Malformations (CCM)

Deciding the best treatment for your child starts with a full evaluation that considers many factors, including: 

  • The effects of the CCMs on your child so far
  • The risks of bleeding and future health problems if the CCMs are left alone
  • How effective medicines are at treating any symptoms your child has
  • The benefits and risks of surgery

Experts in our Pediatric Vascular Neurology Program will talk with you in detail about what they recommend for your child and why.

There is no medicine to get rid of CCMs, but medicines may help with symptoms, such as headaches or . We are very experienced in diagnosing and treating children, teens and young adults with all types of seizures.

Surgery for Cerebral Cavernous Malformation (CCM)

Your child’s doctor may recommend surgery to remove a CCM to:

  • Control seizures that do not respond to medicine
  • Reduce the risk of future health problems the CCM may cause

Our neurosurgeons have special expertise in removing CCMs and using the brain-mapping tools like fMRI (functional magnetic resonance imaging that make this surgery as safe as possible. We offer both minimally invasive laser ablation surgery and open surgery that removes part of the skull (craniotomy) to reach the problem area.

  • Deciding if surgery is best

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

    • If your child’s 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

     

  • Mapping brain function to make surgery as safe as possible

    Before surgery, our epilepsy experts use advanced techniques to pinpoint the CCM and map the brain. These methods include , fMRI (functional magnetic resonance imaging) and 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 . 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 inside a child’s skull on many parts of their brain. Learn more about intracranial EEG monitoring to diagnose and treat seizures.

  • Craniotomy to remove a CCM

    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 . 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.

  • Laser ablation surgery

    For some children, laser ablation (LAY-zer ab-LAY-shun) surgery is an option with fewer side effects than traditional (open) surgery. This 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.

Ongoing Care

Seattle Children’s provides ongoing care for children with CCMs, including long-term follow-up and rehabilitation for those who need it.

If your child’s CCM caused seizures, surgery to remove it may stop their seizures or reduce the number. They may need less medicine to control seizures. Some children have more than 1 CCM or form new ones and may need multiple surgeries over time.

Ongoing care will depend on your child’s needs. Children who had before surgery may get back to the same level of function after surgery or improve their function even more with rehabilitation services.

Your child may benefit from:

Our team is experienced in helping children return to school and other important activities after brain surgery or other treatment. We also work with you to find resources in your community.

  • Transition to adult care

    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.

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Paying for Care

Learn about paying for care at Seattle Children’s, including insurance coverage, billing and financial assistance.