Feeling rather isolated as a cavernom... - Cavernoma Allianc...

Cavernoma Alliance UK

440 members119 posts

Feeling rather isolated as a cavernoma victim in Guernsey

splodge profile image
8 Replies

i have a brain stem cavernoma but don't know any other patients here in Guernsey. It would be great to meet up with other victims locally please ring me on 235972 so we could arrange a get together. Sarah

Written by
splodge profile image
splodge
To view profiles and participate in discussions please or .
8 Replies
CAUKcommunity16 profile image
CAUKcommunity16Partner

Hi Sarah,

I will check our database for local members. It would be really beneficial to you to join CAUK, it's free 😀

splodge profile image
splodge in reply to CAUKcommunity16

I am a CA UK member already. I am just hoping to meet up with other members who are in Guernsey like me. Best wishes Sarah

julebee profile image
julebee

Hi Sarah I live in Australia but I too have just been diagnosed with cavernoma in pons of brain so if you would like to connect and share stories online i am more than happy to. Regards Julie

Bshepherd profile image
Bshepherd

Hi Sarah i was diagnosed with a Cavernoma in febuary, i had 5 seizure so my Consultant decided that they needed to remove it which i have a date on the 5th of october.Im so nervous and was just wanting to chat to someone who was going through the same thing .

splodge profile image
splodge in reply to Bshepherd

I'd love to have a chat please give me a call 235972. I had it removed last year and hope I can reassure you. Sorry I haven't replied sooner. Sarah

splodge profile image
splodge in reply to Bshepherd

I hope all has gone well and the surgery was a complete success. Take it easy it will be worth it. Stay in touch. Best wishes, Sarah

splodge profile image
splodge in reply to Bshepherd

I hope all has gone well and your operation was a complete success. I'd love to hear from you. Where did you have the surgery? Take things easy you will soon recover. Best wishes, Sarah

Wendysparks profile image
Wendysparks

I am in south africa and wish I had contact with other locally.

Not what you're looking for?

You may also like...

Do you have a spinal or brain cavernoma?

Do you have blood relatives affected by a brain Cavernoma?

Newly diagnosed

I've been diagnosed with a cavernoma back in June of this year following symptoms that were...

My partners brainstem cavernoma

Hi all. My partner was diagnosed with a pontine cavernoma about 4 weeks ago. She had been suffering...

Recently diagnosed brainstem cavernoma

I have double vision and numbness down the left hand side. I have had a recent bleed in the brain...