St Albans father raising awareness of rare brain condition that almost killed him

Ben George with daughter Taylor. He is raising awareness of a rare brain condition.

Ben George with daughter Taylor. He is raising awareness of a rare brain condition. - Credit: Archant

A St Albans father-of-one is trying to raise awareness of a rare brain condition which could have killed him.

Ben George with daughter Taylor. He is raising awareness of a rare brain condition.

Ben George with daughter Taylor. He is raising awareness of a rare brain condition. - Credit: Archant

Ben George, 40, suffered from a lesion which caused him to have several brain haemorrhages and resulted in life-saving brain surgery when he was just 30.

He says there needs to be more understanding and awareness of the condition which affects 1 in 600 people, and has recruited help from his daughter Taylor’s school - Sauncey Wood Primary in Harpenden.

Ben suffered from cavernoma, a lesion in the brain or spine made up of abnormal blood vessels. The lesion can lay dormant for many years until it becomes active and starts causing problems, such as strokes, seizures, cognitive problems, and mobility issues.

This Friday, Sauncey Wood is holding a non school uniform day which will aim to raise funds for UK-based charity, The Cavernoma Society, and celebrate the charity’s annual awareness day - Raspberry Day.

Headteacher Steven Lloyd said: “It a pleasure for us to get involved and help raise funds and awareness. It’s important for the children to learn about conditions such as cavernoma, as you never know who it may affect.”

Ben was diagnosed with the condition after suffering from a brain haemorrhage.

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“I had the most severe headache, while I was working laying a patio. My headache was accompanied with severe nausea and vomiting. I didn’t know at the time but I was having a brain haemorrhage.”

After many scans and discussions, Ben was told he had a cavernoma in his fourth ventricle at the back of his brainstem. This is a very delicate place and surgery is dangerous, so Ben decided to take a “watch and wait” approach.

He went on to have multiple brain haemorrhages and hospital visits over the years.

“I was self-employed, so no sick pay, and each episode/recovery/haemorrhage period lasted three to four months. Each time I had to build up my stamina and strength in order to work full-time.”

In 2014 Ben had what he calls his “worst haemorrhage”, causing him to have a seizure. However, he still refused to have brain surgery to remove the cavernoma due to the high risk of severe disability from the surgery.

Nevertheless, by April 2014, Ben had no choice and was rushed into hospital for emergency brain surgery. He didn’t just have one operation, but two, as they didn’t get the whole cavernoma the first time - with the surgeries lasting seven hours and over two hours respectively.

After surgery Ben suffered with severe vomiting and was being sick every 20-30 minutes. This continued for 2 months. He spent two and a half months in hospital and when he was finally discharged he was told to stay in bed to recover for the next nine months.

“I was taking so much medication, that I sounded like a baby’s rattle.”

Ben also had physio and had to work hard on his balance and coordination, which were “out of sync”. He was also faced with neuro-fatigue.

“I felt like an old, broken man at just 36,” he said.

He is now unable to work, in spite of his determination and drive, as his chronic fatigue, lack of balance, and memory issues prevent him from being able to hold down a job.

“My fatigue and balance have prevented me from carrying out many tasks we all simply take for granted. I’d always provided for my family and this little raspberry in my head took that from me.”

In March 2018, Ben hit a wall in terms of his depression and anxiety. Fed up of not being able to provide for his family and the debt that they’d accrued due to his illness, he became suicidal.

“I was depressed, I had suicidal thoughts, there was no future for me and my body. I had been fighting everyday for eight long years and I was all out of grit and perseverance. My body was shutting down, it was telling me you have burnt out and can’t go on like this anymore.

“Then I found The Cavernoma Society and was finally brave enough to pick up the phone. I spoke to Simona, the founder and I haven’t looked back. Simona is also a fellow Cavernoma carrier, who after suffering herself and having brain surgery, decided to start a Cavernoma charity up herself to help fellow sufferers and their families make people aware of the condition. She suggested I spoke with the charity’s therapist, Ellie.”

“Simona and Ellie changed mine and my family’s lives! I didn’t feel alone anymore, I felt I had more worth. They helped with retreats and gaining access to benefits and financial help. The gave me back some purpose, some confidence and worth. I can’t thank these two ladies enough and The Cavernoma Society is the most wonderfully tight-knit, friendly, heartfelt, and brilliant charity I’ve ever been a part of,” said Ben.

He added: “I’m eternally grateful to The Cavernoma Society, along with the wonderful members that showed me love, support, encouragement, friendship and an ear to listen alongside a shoulder to lean on. The charity changed my newly-found life and gave me hope for the future. From where I was contemplating ending my life to where I am now, with a sense of hope and the thought of a future! I hope people can read my story, discover this amazing charity and spread the word and awareness of The Cavernoma Society.”

Ben is also crowdfunding to try and get his life back on track.