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Frequently Asked Questions

  • How many people are affected by brain aneurysms?
    It's difficult to estimate exactly how many people are affected by brain aneurysms because they usually cause no symptoms and remain undetected all through life. Our recently published Targeted Literature Review showed that according to a 2005 study*, there are 7,221 cases of ruptured brain aneurysms in the UK each year. However, as the review highlights, the UK population has grown by 8 million people since 2005 and so there is a need for more data regarding the number of brain aneurysms in the UK. It is also impossible to tell how many of these have a hereditary pattern or are sporadic, meaning they happen suddenly and without a family history. *Rivero-Arias O, Gray A, Wolstenholme J. Burden of disease and costs of aneurysmal subarachnoid haemorrhage (aSAH) in the United Kingdom. Cost Eff Resour Alloc 2010;8:6. More information can be found here: Familial Intracranial Aneurysm Research and within our Targeted Literature Review.
  • Are brain aneurysms treatable?
    If you have a strong family history of familial intracranial aneurysms, there is a 2.3% to 29.4% chance of having an unruptured brain aneurysm compared with 0.2% - 8.8% of the general population*. There are many statistics out there and you will find different numbers in different places. At the moment no one number defines increased risk. More research, a better connection with the patients and their families and learning from the patient experience is needed. Current advice from the NHS says that aneurysm screening with an imaging study of the brain vascular system (i.e. MRI scan) is recommended for people who have two or more first-degree relatives (father, mother, sister or brother) who have experienced a subarachnoid haemorrhage (where an aneurysm has burst and there is bleeding in the space between your brain and the surrounding membrane).
  • Should we get screened if brain aneurysms run in our family?
    It is important to note that screening for brain aneurysms is a personal choice. Some people who are offered screening choose not to know due to the increased worry and anxiety it may bring. Often talking about your risks with specialists and genetic counsellors can help you understand the risks and make an informed choice for yourself. These two guides provide useful information about screening for familial aneurysms: Brain Aneurysms and screening from The Walton Centre Information for adults considering screening for brain aneurysm, NHS Lothian
  • What happens if an aneurysm is found?
    If an aneurysm in the brain is found, the specialist - usually a neurosurgeon or a neurovascular specialist - will work with you to determine if the aneurysm should be treated and, if so, what type of treatment to have. Sometimes the specialist may suggest a watch and wait approach, depending on the size and location of the aneurysm. That means you’ll undergo regular screening to monitor its size. If no aneurysm is detected, a repeat screening may be recommended in the future. This is all dependent on your family history, your desire to be screened and willingness to know, and on the advice of your clinician. Not everyone wants to undergo screening and that is a personal and valid choice. It is always up to the individual to decide what’s best for them. For more information on brain aneurysm treatment options, please visit the NHS website: Brain aneurysm - Treatment - NHS
  • What causes aneurysms?
    Are there any risk factors which increase the likelihood of a brain aneurysm? A history of aneurysms in a family increases the risk of brain aneurysm, with unruptured brain aneurysms occurring more frequently in individuals with a strong family history of brain aneurysms. Environmental factors, such as smoking and high alcohol consumption can also increase the likelihood of a brain aneurysm. For more information, please see the NHS website: Brain aneurysm - Prevention - NHS
  • How are aneurysms diagnosed and treated?
    What’s the latest NHS advice if I think that I may be at risk from a hereditary brain aneurysm? There is limited information and guidance on the NHS website about familial disease. Please follow the link for the information including details about how brain aneurysms are diagnosed and treated. According to the National Institute for Health and Care Excellence (NICE), an executive non-departmental public body of the Department of Health and Social Care in England, screening is recommended for people thought to have a significant risk of having a brain aneurysm that could rupture at some point in the future. This relates to those who have two or more first-degree relatives (father, mother, sister or brother) who experienced a subarachnoid haemorrhage. Of course, not everyone wants to undergo screening and that is a personal choice. It is always up to the individual to decide. If you have a strong family history, including two or more first-degree relatives, members of your close family (parents, brothers, and sisters) may also be advised to have an MRA - Magnetic Resonance Angiography or MRI - Magnetic Resonance Imaging scan to check for possible aneurysms too. If you have any questions or concerns, talk to your GP about your family history and your worries. They can then advise on the next steps and how to access NHS screening. You may also be referred to a genetic counsellor to talk through your family history and decide whether screening is right for you. More information can be found on Genetic and genomic testing on NHS NHS Lothian has produced a useful guide for people who are considering screening for brain aneurysms. See: Information for adults considering screening for brain aneurysm
  • What are my options if I have been diagnosed with a hereditary brain aneurysm?
    If you have been diagnosed with a hereditary brain aneurysm we offer useful information to help you. Although everyone's journey will be different, there are a number of options open to you. You can discuss the best options for you with your specialist or neurosurgeon. For more information on treatment options, please visit the NHS website: Brain aneurysm - Treatment - NHS
  • Who can I talk to if I've been diagnosed with a brain aneurysm?
    Who can I talk to if I've been diagnosed with a brain aneurysm? If you are worried and would like to talk through your concerns with a trained specialist, the Brain & Spine Foundation Helpline nurses can help you by talking through your questions and providing explanations on anything you don’t fully understand. They are there to help and can be contacted on 0808 808 1000
  • I'm feeling worried. Who can help?
    The Brain & Spine Foundation is a great place to get support and information, helping you to tackle concerns and help inform your choices and plans. The information and support available includes: A map of neurological centres within the UK Questions to ask your doctor Information on what you can do when you are undiagnosed with a brain aneurysm and other articles offering support If you are worried about brain aneurysm subarachnoid haemorrhage, you could contact your GP who can talk you through options and may refer you to a genetic counsellor (a specialist in hereditary conditions such as HBA). For more immediate support, you can talk to a trained specialist at the Brain & Spine Foundation. Their Helpline nurses can help you by talking through your questions and providing explanations on anything you don’t fully understand. They are there to help and can be contacted on 0808 808 1000
  • What genetic research is available?
    Within the ‘Targeted Literature Review’ (a look at the research available on this condition) published by HBA Support in 2022 a review and summary of current genetic research shows there are multiple genetic candidates that cause hereditary brain aneurysms. However, there is currently no consensus and insufficient understanding of these in the clinical community. More research is needed to help build the list of genetic candidates and understand their significance. It is hoped that, eventually, genetic screening (a simple blood test) would allow early diagnosis of those at risk of brain aneurysm subarachnoid haemorrhage so that preventative measures can be taken.
  • What are the NICE Guidelines for suspected FIAS/ Familial Brain Aneurysms?
    In February 2021, NICE also concluded, through its review of treatment, that more research is needed in this important area. The NICE report on Subarachnoid haemorrhage caused by a ruptured aneurysm: diagnosis and management explored routes to diagnosing and treating an aneurysmal (caused by a ruptured aneurysm) subarachnoid haemorrhage and its complications, and provides recommendations to improve the speed and accuracy of diagnosis and ensure that the most effective treatments are offered.
  • Where can I go for further information?
    Below are links to further resources which you might find helpful: Brain and Spine Foundation BASIC - Brain and Spine Injury Centre Brain Injury Matters Brain Injury Foundation - Information on familial aneurysms Brain Aneurysms and screening from The Walton Centre Brain Aneurysm Foundation a US-based charity Gene People Headway Information for adults considering screening for brain aneurysm, NHS Lothian NHS information on brain aneurysms NeuroLifeNow P.A.U.L for Brain Recovery SameYou The Brain Charity TLR
  • What are the genetic causes of Hereditary Brain Aneurysms?
    Our Targeted Literature Review highlights some of the many studies that investigate the genetic causes of hereditary brain aneurysms. Our report highlights the most common variants that have bene identified in global research. More needs to be done to improve our understanding of the genetic causes. We hope that by working with the research community we can increase our knowledge into what the genetic factors may be and improve the diagnosis and treatment journey for families.
  • My family has been impacted by aneurysms, what is the risk to me?
    Just like heart attacks, ruptures or aneurysm haemorrhages (where an aneurysm bursts) are usually one-off events in someone's life and usually don’t carry a hereditary risk. Sometimes though, patterns occur in families. When this happens, further investigation is needed.
  • Who is affected by brain aneurysms?
    Current NHS guidance on brain aneurysms states that brain aneurysms can develop in anyone at any age but are more common in people over the age of 40 and women tend to be affected more commonly than men. Most aneurysms happen without any family history. This is often down to bad luck although sometimes environmental factors, such as smoking, high blood pressure and excess alcohol can play a part.
  • Research on Familial Intracranial Aneurysms
    A history of intracranial aneurysms in a family also increases the risk, with the prevalence of unruptured brain aneurysms higher in individuals with a strong family history of brain aneurysm. View the Targeted Literature Review for more information. If aneurysms are proven to run in families, the condition is known as familial intracranial aneurysms (FIA) or familial aneurysms syndrome (FAS).
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