Choose University of Utah Health For the Best Cavernoma Care
Our cavernoma specialists at University of Utah Health are among the most experienced in the Mountain West. We diagnose and treat approximately 150 patients with one or more cavernomas each year.
U of U Health is the only academic medical center in Utah and the Mountain West. We are internationally recognized as a leading research and teaching center, where we train the majority of Utah’s health care professionals. We are committed to personalized care. We help you achieve the best possible outcomes with our team of specialists and resources:
- Multidisciplinary team of specialists in cavernoma diagnosis and treatment
- Nationwide clinical trials for cavernoma treatment and management
- Cavernoma patient registries and biobanks supporting research and drug discovery
- Fellowship-trained experts in clinical care and research
- Medical care powered by leading-edge discoveries and scientific innovations
How to Make an Appointment
Fill out our form to request an appointment with our neurosurgeons or neurologists. Our care team will reach out to you within one business day. You don’t need a referral to see our specialists.
Meet Our Cavernoma Specialists
2 Resulting Health Care Providers
Karol Budohoski, MD, PhD, FRCS
Shervin Rahimpour, MD, FAANS, FCNS
What to Expect at Your First Appointment
If a provider has already checked you for a cavernoma, we'll ask you to bring or send your test results:
- CT or MRI scans
- Genetic tests
- Results from tests of your nervous system
We will tell you which tests you'll need if you haven’t had any of them. Your doctor will likely do a few different things at your first appointment:
- Ask questions—Your provider will ask about your symptoms, including when they started and how often you have them. We also ask what medications you’re taking and your family’s medical history.
- Test your health—Your provider will test your strength, balance, speech, vision, and memory to help understand how the cavernoma is affecting your daily life.
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Schedule scans—Your care team will schedule imaging scans to find out where the cavernoma is located.
Your provider works with you on a plan for your symptoms based on the imaging results. Your test results may suggest that you are at a high risk of future bleeding or seizures. If so, your provider may recommend surgery as a treatment option.
What Is a Cavernoma?
A cavernoma, also known as a cavernous angioma or cavernous malformation, is an abnormal growth made from small blood vessels (capillaries). This mass resembles a mulberry or a bunch of raspberries and can look like popcorn on medical scans.
The abnormal blood vessels form groups of hollow spaces known as caverns. These abnormal blood vessels are weak and can lead to blood leaking into the brain or spinal cord. Cavernomas can be anywhere in your body but are most often in the brain or spinal cord.
Cavernoma Symptoms
Many cavernomas never cause symptoms. Doctors most often find them when you have a scan done for another reason. Symptoms often happen when a cavernoma leaks blood or presses on a nearby structure. You may experience a variety of common symptoms:
- Balance or walking problems
- Changes in vision, such as double vision or worsening vision
- Difficulty speaking
- Feeling like you or the room is spinning (vertigo)
- Headaches
- Weakness or numbness in an arm or leg
Seizures are another common symptom of a cavernoma in the brain. Seizures may occur when a cavernoma bleeds. They can also be caused by cavernomas putting pressure on the brain.
Symptoms can become more obvious and potentially dangerous over time. This can happen if the cavernoma grows or causes repeated bleeding. You might notice other advanced symptoms:
- Confusion
- Loss of consciousness
- Memory or concentration problems
- Severe headaches
- Slurred speech
- Weakness on one side of your body
Make an appointment with your provider:
- If you experience regular episodes of one or more of the common symptoms related to a cavernoma
- If you have any of the advanced symptoms mentioned above
Types of Cavernomas
The most common types of cavernomas occur within your nervous system:
- Cerebral cavernomas are in the main parts of your brain. These areas control thinking, movement, and your senses. Problems often cause seizures, headaches, or difficulty with speech, vision, memory, or movement.
- Brainstem cavernomas form in the area between your brain and spinal cord. Problems may cause facial weakness or numbness, difficulty swallowing, dizziness, or balance problems.
- Spinal cord cavernomas may cause weakness or numbness in the arms, legs, or both. You may also have bowel or bladder issues.
Cavernoma Causes
About one in 500 people has cavernomas. Cavernomas can come from a DNA change (mutation) that may occur at any time in a person’s life. These are called sporadic cavernomas.
Cavernomas may also be present when you’re born. About one in five people with a cavernoma has familial cavernomas. This occurs when a DNA change is passed down from a parent (familial cavernoma). This change leads to weak spots in capillary walls that make it easier for cavernomas to form.
How Are Cavernomas Diagnosed?
Cavernomas are often found when you have a test for a different condition. People aged 20–50 are the most likely to get a cavernoma diagnosis due to symptoms they experience.
If you have symptoms, your provider starts with imaging scans to find the cavernoma.
There are two main types of scans:
- MRI scans show a cavernoma’s size, shape, and exact location. It also allows your doctor to see if you have multiple cavernomas.
- CT scans help spot fresh bleeding and major swelling. This allows providers to quickly check for cavernomas if you have more advanced symptoms.
Your provider may also give you a genetic test. The tests can use blood or saliva samples. Testing shows what kind of DNA change caused the cavernoma. This also helps your provider create a personalized treatment plan.
Cavernoma Treatment
Treatment depends on the size and location of the cavernoma and whether it causes symptoms. Many cavernomas do not cause any noticeable symptoms. Providers may prefer to schedule you for regular follow-up appointments for imaging scans in these cases. This lets them watch the cavernoma, track its growth, and see if it’s leaking blood. Your provider may recommend an MRI scan every 6–24 months to check for new growth or bleeding. Other treatment options are available if necessary:
- Medications are used to manage early or mild symptoms. Medications may include anti-seizure medicine or pain medication for headaches.
- Surgery removes the cavernomas if they have bled before and are likely to bleed again. Complete surgical removal can cure the cavernoma.
Your care team will include specialists:
- Neurologists check for symptoms such as headaches, seizures, weakness, numbness, or balance problems.
- Neuroradiologists can do imaging tests on your brain and spine.
- Neurosurgeons review imaging results and perform surgery if needed.
Living With a Cavernoma
Most people with cavernomas (up to 90%) never or rarely have symptoms. It is common for people to live full lives without major issues. Your doctor may suggest watching the cavernoma if you don’t have symptoms. You can do this with checkups and imaging scans once or twice each year.
Most people with cavernomas can do normal activities:
- Drink limited amounts of alcohol and caffeine
- Fly in an aircraft with normal cabin pressures
- Have a vaginal birth alongside a supervised pregnancy
- Exercise and take part in non-contact sports
Can Stress Cause a Cavernoma to Bleed?
Stress and anxiety can cause your blood pressure to rise. Patients with a higher hemorrhage risk (chance for a bleed) could develop problems from high blood pressure (hypertension).
Patient Support Groups
University of Utah Health is a partner of the Alliance to Cure Cavernous Malformation. The organization has resources available for patients and physicians and offers a nationally recognized patient support group.