Cavernoma

Cavernomas are a type of vascular malformation (abnormal blood vessels) that occur in children and adults. They are often found in the brain but can also form in the spine or retina in rare cases.  

There are two main types of cavernomas:

• The sporadic form is the more common type. People with this form usually only have one cavernoma.
• The familial form is genetic, meaning it is caused by an inherited gene mutation that can be passed down from parent to child. This type accounts for about 20% of all cases. People with the familial type usually have more than one cavernoma. 

Imaging Scans
Cavernomas are diagnosed using imaging scans. It’s important to seek advanced care at a center like Duke, which can offer the full range of imaging options, including the newest techniques.

• A CT scan uses X-ray technology to create 3D and 4D images of your brain, spine, or retina. This option can only identify cavernomas that have bled.
• An MRI uses a powerful magnet and radio waves to produce high-resolution images. You may benefit from quantitative susceptibility mapping (QSM) -- a specific MRI setting or sequence that can detect and quantify small amounts of bleeding (called micro-bleeds) from the cavernoma. QSM helps determine how likely your cavernoma is to hemorrhage. 

Genetic Testing
Our genetics specialists can test blood samples from you and your family members to determine if you have the familial form of the disease. Genetic counselors can discuss your chances of passing it along to your children.

Neurocognitive Testing
Experts can assess how well your brain is functioning by asking you to answer questions and perform simple tasks.

Your doctors will recommend a treatment plan based on the number of cavernomas you have, their size, their location, and other factors.

Watchful Waiting
Your doctor may advise that your best course of action is to closely monitor your cavernoma with regular imaging studies.

Medications
Medicines can help treat symptoms like seizures and headaches. Duke is involved in research studying medications that could help strengthen the affected blood vessels and stop cavernomas from forming.

Cavenernoma Center of Excellence
Duke University Hospital's Center of Excellence designation by the Alliance to Cure Cavernous Malformation recognizes our collaborative team of clinical specialists and expertise as well as our active clinical research and patient education efforts. This ensures you receive the most comprehensive care and more treatment options.

More Experience, Better Outcomes
Research shows that hospitals and surgeons who perform more surgeries tend to have better outcomes. At Duke, we treat more people with cavernomas than most centers. Our surgeons are experienced in tackling the most complex cavernomas. You'll be among others from around the region and beyond who travel to Duke for cavernoma care. 

Team Approach to Care
Your care team consists of specially trained neurosurgeons, neurologists, neuroradiologists, medical genetics specialists, epileptologists, and others who work together to consider every aspect of your condition. We meet monthly to discuss individual patients and their treatment plans. 

We Prioritize Your Convenience
Whenever possible, we schedule multiple appointments with different specialists all in one day. If you have a familial cavernoma and you want to have your family members tested, you can attend appointments together. This saves you time and effort.  

Nurse Coordinator Guides Your Care
Our nurse navigator becomes your one-stop shop for scheduling appointments, coordinating visits, communicating your results, and planning surgery. It’s their job to make your treatment journey easier by guiding you through it step by step, and they are more than willing to answer your questions along the way.

Clinical Research Leaders
We are committed to improving care for people with cavernomas. Duke researchers helped discover the genes responsible for the familial form of cavernomas. As a Duke patient, you may be eligible to participate in clinical trials studying cavernomas and how to treat them.