• Document: Information booklet Symptomatic brain cavernomas
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Cavernoma Alliance UK Helping the Cavernoma Community Information booklet Symptomatic brain cavernomas For people with symptoms due to their brain cavernoma www.cavernoma.org.uk info@cavernoma.org.uk Registered Charity Number: 1114145 This booklet is for people affected by a brain cavernoma, which is also known as a ‘cavernous angioma’, ‘cavernous haemangioma’, or ‘cavernous malformation’. In particular, this booklet is for: • people who have symptoms caused by a brain cavernoma. There are other booklets in the Cavernoma Alliance UK series: • one for people who have symptoms due to their brain cavernoma; and • another for people who do not have symptoms from their brain cavernoma. What are brain cavernomas? Cavernomas are clusters of abnormal blood vessels. Cavernomas are found in the brain, brainstem, spinal cord and, rarely, in other areas of the body. Reproduced with permission Cavernomas look like raspberries, from Proradiographer and are about the same size. Cavernomas are made up of abnormal blood vessels through which blood flows slowly – these are the caverns that give the condition its name. The cells that line these caverns sometimes ooze small amounts of blood into surrounding brain tissue, which sometimes causes symptoms. Cavernomas can get bigger, but this growth is not cancerous and they do not spread to other areas of the body. Most people with the condition only have one cavernoma. Some people have more than one cavernoma, and these people sometimes develop new cavernomas over time. Cavernomas can also be diagnosed by looking at brain tissue under the microscope. View of a cavernoma under the operating microscope The cavernoma is indicated by the arrow. The brain after the removal of the cavernoma. Reproduced with permission from www.neurochirurgia-ire.it www.cavernoma.org.uk 3 How are cavernomas diagnosed? Cavernomas have been known about since the middle of the 19th century, when they were seen by pathologists examining brains under the microscope. Magnetic resonance imaging (MRI) is the most accurate test and provides pictures of brain cavernomas. Computed tomography (CT) scans and angiograms cannot be relied upon to show up cavernomas. Doctors only began to see how common cavernomas were when the MRI test was first developed in the 1980s. Before the MRI test was available, symptoms of brain cavernomas were sometimes missed, or mistaken for symptoms of other neurological conditions, such as multiple sclerosis. Even now, some people with a brain cavernoma wonder if they might have been diagnosed earlier if they had had an MRI test to investigate neurological symptoms that they had in the past. Magnetic resonance imaging (MRI) of the brain (above) showing the typical ‘raspberry’ or ‘popcorn’ appearance of a cavernoma in an area called the ‘midbrain’, which is shown by the arrow on the picture. 4 www.cavernoma.org.uk A patient about to enter MRI scanner, with radiologist and radiographer (on left of picture). What causes brain cavernomas? In most cases, it’s impossible to know what caused a brain cavernoma, but there are two recognised causes. Radiation treatment Radiation is used to treat a variety of medical conditions. During radiation treatment, a patient’s brain may be exposed to radiation. Some of these people are later found to have a brain cavernoma. If these people have never had an MRI scan in the past, it is impossible to be sure whether the radiation had anything to do with the brain cavernoma developing. Even for patients who have had an MRI scan in the past, the age of the machine and the types of pictures taken during the scan may explain why a cavernoma was never found. However, for a few people who have had an MRI scan before receiving radiation treatment, and another MRI scan later on that identifies a brain cavernoma, it is possible that the radiation may have caused the cavernoma. Genes In less than half of the people affected by brain cavernomas, there is likely to be a genetic cause. Some people have more than one cavernoma, or may develop more than one cavernoma over time. In these cases there may be a genetic cause. These issues are discussed in further detail in the ‘Information booklet for people concerned about genetic causes of brain cavernomas’. www.cavernoma.org.uk 5 How common are brain cavernomas? Brain cavernomas are quite common. Studies into the results of MRI scans on people who had no symptoms have revealed that approximately one pe

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