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Cavernous malformations are also known as cavernous angioma, CCM, and cavernoma. They are made of abnormal blood vessels. They are not cancerous. Cavernous malformations are made of the smallest blood vessels, called capillaries. They resemble mulberries and have very thin walls compared with other blood vessels. Blood moves through them very slowly. The thin vessel walls can be leaky, allowing blood into the surrounding brain or spinal cord tissue. We believe about one in every 500 people has a cavernous malformation, but most people never have symptoms. Of the people who have a cavernous malformation, we believe many will never have a symptomatic hemorrhage.
The rarest place for a symptomatic cavernous malformation is in the spinal cord. A spinal cord cavernous malformation is not the same as a spinal hemangioma, which is located in the vertebra (bone). Cavernous malformations may also occur in the area of the brain called the brainstem. Spinal cord and brainstem cavernous malformations can cause more severe symptoms when they hemorrhage.
Patient Story: Stacie
Patient Story: StacieSporadic Cavernous Malformation with Seizure
Stacie awakened in the middle of the night, just like many other nights. Only this time, as she tried to walk across the room, she became unsteady and fell into the wall. The dizziness happened again the next morning. A 36-year-old mother of four, Stacie sought medical help, but after numerous tests, the doctors were unable to provide her with a diagnosis.
One evening a year later, Stacie experienced what she later would learn was a series of partial complex seizures that included involuntary movement, a loss of awareness, and difficulty speaking. Her husband rushed her to the local hospital where a CT scan revealed an unidentified mass deep in her right temporal lobe. Stacie transferred to a larger hospital with more advanced diagnostic capabilities where she received an MRI.
Her brain mass was diagnosed as a cavernous malformation (cavernous angioma, cavernoma), and she was discharged on anti-seizure medication. Despite this, the seizures continued, and she sought a surgical consultation. The doctors informed her that removing her lesion would be difficult because of its deep location, and surgery could cause additional harm. Stacie needed to accept her new normal.
It has been a year since her diagnosis. After trying a few different anti-seizure medications to find the best fit, Stacie’s seizures are now under control. She says she has learned to leave her high heels in the closet because she still experiences dizziness. Sometimes she has trouble finding the right words. “It’s like playing charades with my kids,” laughs Stacie. “Eventually they figure out what I mean.” She is happy to be driving again and to be able to take care of her family.
Says Stacie, “My brain hemorrhage changed my life, but I know there’s a reason. I will use it as a strength and not a weakness.”
Your doctor may have discovered your cavernous malformation (cavernous angioma, cavernoma) when you had brain or spinal imaging for a reason not related to your cavernous malformation. For example, you may have received a CT scan or an MRI after a car accident or concussion. In this case, doctors will call your cavernous malformation an incidental finding. Research has shown that incidental cavernous malformations that have not had a previous hemorrhage have a very small chance of ever becoming problematic. While you may want to follow the precautions listed in the Hemorrhage section of this booklet, you may not need repeat imaging unless instructed by your doctor or you develop symptoms. However, many doctors and patients choose to have imaging, typically with MRI, to monitor the lesion. For example, your doctor may order imaging during pregnancy, after medication changes, if another illness is diagnosed, or at times of dramatic lifestyle change, which can include extreme or unusual exercise.
