Roxanna's Story - Asymptomatic Cavernoma

In 2023 Cavernoma Alliance UK was approached by a filmmaker who has cavernoma, Lucy Gohm. Lucy wanted to help amplify the voices of the cavernoma community, by interviewing people with cavernoma and sharing their stories. In this film Roxanna tells Lucy about her cavernoma journey.
For more information about cavernoma please visit www.cavernoma.org.uk and if you would like to connect with Lucy you can find her on instagram at _go_cy_
A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord and looks like a raspberry.
1 person in 600, in the UK, has a brain cavernoma without symptoms (asymptomatic). This equates to roughly 90,000 people - enough to fill Wembley Stadium. A spinal cavernoma is rarer than a brain cavernoma.
For more information about Cavernoma Alliance UK, please visit cavernoma.org.uk/

[@kateshephard4920]

Thank you for sharing your story. Mr Kitchen is brilliant. I’m so glad you didn’t take that first surgeons advice.

[@roxannadixon5096]

Thank you for your comment.

[@sarahstevenson-olds5012]

Thank you also for sharing your story, sounds like a similar experience with my first neurosurgeon. Bedside manner is/was the same 🙈

[@roxannadixon5096]

Sadly it does seem to be fairly common.

[@danielascarpellini8639]

Hi Roxanna, same story. Just two weeks ago went to the ent for right ear tinnitus and he told me nothing to be worries but we found a cavernoma .
2015 wasn’t detected when I had an mri scan done. Thank you for sharing this will help me to try to think about it in a different way. Dani

[@roxannadixon5096]

Hi Dani, thank you for your comment. I was briefly in two minds about doing the video initially but I'm glad I decided to.

[@adelaidehayley6360]

Love this great story 😁

[@roxannadixon5096]

Thank you.