Although most have never heard the term "cavernous malformation," as many as 1 in 500 people may have this condition, which can cause bleeding, seizures, muscle weakness, and motor and memory problems.
"Cavernous malformations are rare -- even to a neurologist or neurosurgeon," says Dr. Kelly Flemming, a Mayo Clinic neurologist. "Having coordinated care by providers familiar with the disease is very important to patients."
To that end, the Angioma Alliance named Mayo Clinic a Center of Excellence in 2017. The center treats and conducts research on cerebral cavernous angiomas, which go by many names, including cerebral cavernous malformations, cavernous hemangiomas and cavernomas.
Dr. Flemming is medical director of the effort, and Mayo patients like Kandie Nelson of Sioux Falls, South Dakota, are helping, too.
"I was working at the front desk at a hotel," explains Kandie Nelson. "And I went to answer the phone, and it came out, 'Blah, blah, blah.' I just -- I couldn't talk. And my hands and my feet started going numb. And, then, I fell to the ground."
Kandie was rushed to the hospital and eventually was diagnosed with a cavernous malformation.
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"They look like this little raspberry or cluster of grapes in the brain," says Dr. Flemming.
A cavernous malformation happens when tiny capillaries divide abnormally and create a small tangle of blood vessels. Many who have the condition don't know it, since symptoms are rare.
"We find these accidentally," Dr. Flemming adds. "Somebody had a head trauma, and they are being scanned, looking for trauma, but we incidentally find one of these. Or they may have migraines, and they undergo an MRI."
"They can just kind of blow out, and that can cause a hemorrhage in your brain," Kandie adds.