Cavernomas, which can form in the brain or spinal cord, are almost impossible to prevent. This condition affects approximately one in 600 people and can be diagnosed at any age, but it is particularly common between the ages of 20 and 40.
Essentially, cavernoma occurs when a cluster of blood vessels forms, typically in the brain or spinal cord, and fills with slowly flowing blood, creating “caverns” that can range in size from millimetres to several centimetres.
Dr Mary Murphy, who specialises in cavernomas at the Cleveland Clinic in London, shared her insights about the condition with Reach on Cavernoma Awareness Day, August 21. Interestingly, she revealed that most cavernomas are discovered accidentally as many patients never experience symptoms.
She disclosed: “Many cavernomas cause no symptoms whatsoever and are discovered because someone has a scan for another reason.”
Although a cavernoma diagnosis usually doesn’t impact daily life, coming to terms with it can still be challenging.
Dr Murphy added: “Many are not affected physically but obviously the knowledge it is there and may cause some mischief in the future is a burden.”
However, she also noted: “Over many years in the field I have come to understand that understanding the diagnosis, prognosis and plan is always better than ‘blissful ignorance’ which usually takes a massive psychological toll.”
The symptoms of cavernomas can vary drastically, ranging from concentration issues to strokes. Dr Murphy explained: “When they are symptomatic there are two main patterns of symptoms: symptoms related to bleeds which can be headaches or symptoms related to pressure on functioning parts of the brain like weakness, numbness or reduced function. The second way in which they may present is with a seizure.”
“Some patients who have cavernomas in the brainstem, for example, need a lot of physical and mental support on a daily basis. There is obviously a wide spectrum of need in between also.”
Typically, treatment plans involve monitoring the cavernoma to ensure it doesn’t cause further complications, while others may require surgery or ‘gamma knife’ treatment. Dr Murphy clarified that the surgery involves removing the blood vessels and, although risky, is usually “a great option” for those suffering from cavernoma symptoms.
On the other hand, gamma knife treatment doesn’t eliminate the cavernoma but instead focuses radiation treatment to reduce the risk of future bleeds. This is ideal for small, inaccessible, symptomatic cavernomas, according to the expert.
Much remains unknown about cavernomas, including prevention methods. However, Dr Murphy pointed out that some people may carry a predisposition in their genes and often have multiple cavernomas, while others may develop them after receiving radiation treatment in childhood.
Despite the alarming nature of having blood-filled caverns in the brain, Dr Murphy reassured: “Of all the conditions I treat this is probably the one with the greatest chance of living a normal life. It is very rare for decisions to need to be made quickly so usually in the circumstance where there is a decision to be made about treatment the patient has time on their side. There is lots of information and support out there, start with your neurosurgeon and Cavernoma Alliance.”
