Newly diagnosed spinal cord cavernoma

[DanTomo]

just been diagnosed with a spinal cord cavernoma , had a bleed in November, apart from a funny feeling in my head and neck I go on as normal .Anyone who's got the same and want to share their experiences would be great.Its in c1 c2 region

thanks and hello

[CAUKcommunity16 Partner]

Hi DanTomo - sorry to read of your diagnosis, it can be quite a confusing/overwhelming time though It seems like you are in good spirits which is half the battle. Well done you. If you’d like, you can join us at CAUK - is completely free and easy to sign up. One of the things we offer is an secret and fully protected online community where people can ask questions, share their stories and offer advice and support to other members. It is a very friendly and supportive group - if you’d like to join us you can go to cavernoma.org.uk and click ‘Become a Member’.

Sending strength

[DanTomo in reply to CAUKcommunity16]

yeah I have done that...thanks

[CAUKcommunity16 Partner in reply to DanTomo]

That is good to hear Dan - we hope that we can be a useful space for you. I will look out for you on the group xx

[CAUKcommunity16 Partner in reply to CAUKcommunity16]

PS I see you are on our database but not on the secret Facebook group. If you would like to be added please send a friend request to Cavernoma Alistair and I will get you added.