Cavernomas: I've been very recently... - Cavernoma Allianc...

Cavernoma Alliance UK
400 members110 posts



I've been very recently diagnosed with Cavernomas following CT scan and MRI scan. I don't know exactly what type. At the moment Im waiting to see if the Neurology dept want to call me in again once specialists look again at my scans. These things always take a long time. My letter says there wont be any treatment done for the time being. So I don't know what to expect. Ive had what seemed like neuralgia pain over right side of my head this year and previously a year ago. Otherwise no symptoms im aware of. I had a triple heart bypass 6 years ago. Im 61 and live on my own. Im trying to diet and exercise as im very overweight but its hard, im always tired. Is there anything not shown on NHS information that I should know? Any activities or foods I should avoid? Im considering learning to swim for exercise, should I avoid this?

3 Replies

Hi - the best place to ask this is Cavernoma Alliance UK (CAUK). It's free to join. They have a secret Facebook group as well where lots of us discuss these things. Did they tell you whether the cavernomas have bled?

Check out the CAUK website they will have all the info you need. Most of the time treatment is not carried out as it is normally a wait and see situation. If your on Facebook there is a CAUK page where you can meet lots of us with cavernomas. We will be happy to help with any questions you have ..


Hello. Thank you for your message. Have you thought about joining Cavernoma Alliance UK? We are free to join, this will then enable you access to Facebook if you send a friend request to Cavernoma Alistair . All will be explained as you join! Here is the link for you to follow:

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