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The following is a list of terms that doctors often incorrectly use to describe a Cerebral Cavernous Malformation (CCM):
Angioma
Cavernous Angioma
Hemangioma
Cavernous Hemangioma
Cavernoma
Venous Malformation
Arteriovenous Malformation
Vascular Brain Tumor
Receiving a correct diagnosis can take years and put the patient through a lot of time-consuming and anxiety-producing tests. A correct diagnosis is key because this knowledge leads to power, and having that power will bring answers.
Doctors refer to CCM using incorrect terminology because they may be unfamiliar with this disease, or may not have up-to-date information. In many cases they are just used to calling it the same thing they have called it for years. This creates confusion and unnecessary stress for the patient. While CCM falls under the heading of “vascular malformations,” there has been a push to bring uniform terminology in this area so that the patients can be provided with current terminology. Therefore, at the request of many doctors and researchers, one of the goals of THE BRAINPOWER PROJECT, is to help solve this problem.
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