Word on Health

Word on Cavernoma

Our grateful thanks to Cavernoma Alliance UK for their contributiion to our radio report (which you can hear again at the bottom of this page)  and for the use of the information below.  To find out more and for help and support click here to link through to the charity.   

What is a Cavernoma - A cavernoma (also known as Cavernous Angioma and Cerebral Cavernous Malformation). is made up of abnormal blood vessels (blood capillaries) and can be found in the brain and/or spinal cord and looks like a raspberry  with thin, leaky walls. Cavernoma are found mostly in the brain and spinal cord.

How many people are affected -  1 in 625, in the UK, has a brain cavernoma without symptoms (asymptomatic). This equates to roughly 108,000 people – enough to more than fill Wembley Stadium.

A spinal cavernoma is rarer than a brain cavernoma.

Fast Facts

  • A cavernoma is neither a tumour nor a compression, but a malformation of blood vessels.
  • Most people will have no symptoms – these are known as asymptomatic cavernoma. 
  • Cavernoma can become symptomatic at any age, most commonly when a person is between the ages of 20-40. Research figures vary but it is thought that only about 160 people in the UK are diagnosed with symptomatic cavernoma each year.
  • Cavernoma can grow and hemorrhage (bleed) at any age, including in young children, when the symptoms normally become more severe.
  • The most common first symptom is seizure (50%), followed by hemorrhage (25%) and neurological deficits (25%) like blurred vision and weakness in limbs.
  • Cavernoma are hereditary in about 20% of people who have the condition, according to the rare disease resource Orphanet. These are known as familial cavernoma and tend to form at an earlier age.
  • Those with the hereditary form will probably have more than one cavernoma and will develop more over time. Those with the non-hereditary form (known as sporadic cavernoma) normally have just one cavernoma.
  • The hereditary form can be caused by a mutation on any one of three genes: CCM1, CCM2, and CCM3.
  • The hereditary (familial) form of cavernoma does not skip generations. Each child of an affected person has a 50/50 chance of inheriting cavernoma.
  • Treatment of cavernoma is often to just treat the symptoms (e.g. with anti-epileptic drugs for seizures and epilepsy).However, if the symptoms are severe, or if the risk of a bleed is considered high, then a clinician may recommend either surgery to remove the cavernoma or what is known as stereotactic radiosurgery to zap it with radiation.

To find out more and for help and support click here to link through to Cavernoma Alliance UK. 

Listen to this weeks radio report

All material on this website is provided for your information only and may not be construed as medical advice or instruction. No action or inaction should be taken based solely on the contents of this information; instead, readers should consult appropriate health professionals on any matter relating to their health and well-being.