The Raspberry Talks by The Cavernoma Society

Ep 3 Jessica Jones: "I thought it was just a bad hangover. They told me I was too young to have a stroke."."

In the third episode of the Raspberry Talks Podcast, we speak with 31 year-old Jessica Jones, who was just 29 when she had a hemorhegic stroke and ended up having brainstem surgery just 6 weeks later.  Following a 16-hour operation and 6 weeks in hospital, where Jess lost her speech, her eyesight, and her mobility, she's trying to rebuild her life now.  She speaks about her diagnosis, the shock of finding out that she'd had a stroke, to then being told she had a cavernoma - something she'd never heard of. She then had the difficult decision of deciding whether to risk life-changing surgery or potentially waiting and having another bleed which could have killed her.  Jess speaks candidly about how this has impacted on her social life, her work-life, and her relationships.  Listen now and learn more about Jess' inspirational journey.

Ep 2 Kevin Weedon: "It has an impact on the whole family - you almost grieve your old life."

In Episode two of The Raspberry Talks Podcast, Simona speaks with Kevin Weedon, a spinal cavernoma patient who has recently gone through surgery and has his spinal cavernoma removed, having lived with it for the past 20 years. Simona and Kevin speak about the lack of information regarding cavernoma, the support available online through charities and support groups, the impact diagnosis and surgery have on the whole family, and the journey from surgery to recovery.  We hope you enjoy it. Please do share and comment. If you'd like to share your story with us, please get in touch - hello@cavernomasociety.org.uk

Ep 1 - Joel Roberts - "They sacrificed my legs to save my arms."

In our first episode of The Raspberry Talks Podcast, Simona speaks with Joel Roberts, who was paralysed from the waist down following his spinal cavernoma diagnosis and surgery.  Joel's life changed overnight at the age of 28, when he walked into hospital with a 'numb leg' below the knee, and 6 months later exited a spinal rehabilitation unit in a wheelchair. Joel is paralysed from the waist down, following emergency surgery to remove a cavernoma from his spinal cord, which severed his spinal cord and left him with a permanent disability. However, as Joel so positively says, his 'legs were sacrificed to save his arms', because blood from the cavernoma was travelling up his spinal cord and could have left him with further disabilities had the surgeons not acted quickly.  We speak about that fateful day on Oct 7th 2020 when Joel went to hospital, his rehabilitation, the emotional aspects of his journey, the changes he's had to make, his day-to-day life now, the support from his family, and finally, his journey to acceptance.  Thank you to Joel for speaking so openly and honestly. We hope you enjoy this episode. Please do share and comment.  If you'd like to share your story please do get in touch. Hello@cavernomasociety.org.uk