FAQs & Useful links

FAQs

Questions to ask your neurologist/neurosurgeon

Some people find it helpful to have this  list of questions when having an appointment with their neurologist and their neurosurgeon.

Travel

Many of you write to ask us about travel insurance. Despite their cavernoma, many members are successful obtaining travel insurance with cavernoma. (REMEMBER – even those members with an incidental, non-symptomatic cavernoma are legally obliged to inform insurers of all pre-existing conditions). Good To Go Travel Insurance provide cover for all types of pre-existing medical conditions up to a high level of severity and they have no age limits to their policies. Their contact details are 0844 334 0165. UKI also cover cavernoma (known to them as neoplasm). Whether you are successful at obtaining insurance depends on the outcome of your medical screening – a series of questions the insurance company will ask you. Responses must be accurate or the insurance may be invalid. Contact either Direct Line or Churchill insurance brokers.

This information is provided by CAUK to support members and is not an assurance that you will be accepted by the underwriter. Neither is the information provided in any way an endorsement of these companies by CAUK staff or trustees

Here is a guide to facilities and assistance available for people with disabilities travelling from Heathrow Airport.

Useful Links

Information

Cavernous Haemangioma (Cavernoma)
An excellent leaflet on cavernomas from Melbourne Neurosurgery. This document is in Adobe/PDF format and you will need the right software to read it. Most people use Adobe Acrobat Reader which you can download for free from this web page.
Brain & Spine Foundation
A charity providing information and support for people with brain and spine conditions.
Cavernomas from NHS Choices
Patient information about cavernomas from NHS Choices.

 

Support Organisations

Angioma Alliance
Our sister organisation. This web site provides a wealth of information about cavernomas along with mailing list, forums and regular chat sessions.
AVM Support UK
AVMs are another sort of arteriovenous abnormality which produce similar consequences for suffers. This group works throughout the UK offering free, patient friendly information and support to all whose lives have been affected.
AVM Survivors
A similar US based group.
CCM Italia La community italiana per per le malformazioni cavernose cerebrali
Cavernoma Patient Forum
Set up by an Austrian working in the UK this is a new website which provides a Forum exclusively for cavernoma patients and their family and friends. The site has been developed by a small group of Europeans all of whom have been directly or indirectly affected by cavernomas. They are able to offer a choice of languages. Initially, the choice is English, German or Dutch. As the website is further developed, they hope to be able to offer more languages.
BASIC
The Brain and Spinal Injury Centre is a specialist resource for people and their families in crisis following a traumatic brain injury or neurological diagnosis. This includes people with cavernomas.
National Hospital for Neurology and Neurosurgery
The National is a leading centre for the diagnosis, treatment and care of patients with a wide range of neurological conditions including cavernomas and their consequences. With its neighbour, the Institute of Neurology, it is a major international centre for research and training.

Research

The International Cavernous Angioma Patient Registry
The Registry was created to link individuals with cavernomas to members of the research community by collecting information from individuals with cavernomas. The goal of the Registry is to facilitate discovery of a non-invasive treatment for cavernoma. Members of the Registry have the opportunity to assist in the development process as members are provided with the most up-to-date information about research studies and clinical trials seeking participants.

Genetic Testing

EuroGenGuide
EuroGenGuide contains information about genetic testing, counselling and research across Europe.
Directory of UK Genetics Centres
Maintained by the British Society for Human Genetics.

 

Support for Related Conditions

Ataxia UK
“Ataxia” means “lack of order”. People with ataxia have problems with movement, balance, and speech. Over 10,000 people in the UK have some form of ataxia and it is a problem which sometimes affects people with cavernomas.
Contact a Family
A cavernoma can leave a child disabled. Contact a Family provides advice, information and support to the parents of all disabled children. They also enable parents to get in contact with other families who’ve been through a similar experience, both on a local and national basis.
Different Strokes
A charity set up by younger stroke survivors for younger stroke survivors. Among other activities it runs 40+ exercise groups throughout Great Britain and Northern Ireland and a telephone helpline.
Epilepsy Action
Epilepsy Society
When a cavernoma in the brain bleeds a common consequence for the patient is epilepsy. These are two UK charities for sufferers and their web sites have a host of useful information.
Migraine Action Association
Migraine is a common side effect of having a cavernoma.
SUDEP Action
The leading voluntary organisation in the UK and internationally on Sudden Unexpected Death in Epilepsy (SUDEP) and other epilepsy related deaths.
Superficial Siderosis – A site for survivors
Superficial siderosis of the central nervous system is when iron salt deposits from bleeds accumulate on the brain surface, spinal cord and or cranial nerves. As people with cavernomas often experience bleeds superficial siderosis can be a result.

Partner Organisations

National Voices
Cavernoma Alliance UK is a member of National Voices (previously the The Long-term Conditions Alliance) which is the umbrella body for national voluntary organisations in the UK working to meet the needs of people with long-term health conditions.
Genetic Alliance UK
The Genetic Alliance UK is a national alliance of patient organisations with a membership of over 130 charities which support children, families and individuals affected by genetic disorders.
Neurological Alliance
the Neurological Alliance’s vision is that every person diagnosed with a neurological condition will have access to high-quality, joined-up services and good information from their first symptoms, throughout their life.
Long Term Conditions Alliance Scotland
LTCAS performs a similar function to National Voices but for Scotland. They run a self management awareness raising campaign called My Condition My Terms My Life which members may find of interest.
Brain and Spine Foundation
The Brain and Spine Foundation helps the 10 million people affected by brain and spine conditions in the UK.

Other

Counselling Directory
A searchable directory of counsellors in the UK which allows you to search for a counsellor close to you and appropriate for your needs.

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