“I really didn’t know what fatigue felt like before I had this bleed”– Hope’s...
In June 2021 I had a sudden onset headache; the only way to describe it is that it felt like a sharp stab to the back of my head. The headache lingered for a couple of days, alongside other symptoms,...
View ArticleEpilepsy and epileptic seizures from brain cavernoma
When people present with symptoms that lead to the diagnosis of a brain cavernoma, half of the time it’s due to one or more epileptic seizures. But what exactly are seizures, how do cavernomas cause...
View Article“Five pieces of advice I would give to someone ahead of brain surgery…”...
My cavernoma was located on right temporal lobe. I was diagnosed on 27th July 2022. My symptoms mainly included severe headaches that the Doctors (GPs, Neurologists) said were episodes of migraine. The...
View Article“Pleased to meet you, I exist” – Flavia’s Cavernoma Story
In September 2021 I was diagnosed with cerebral cavernoma - a benign tumor in the right temporal lobe - and was told that this tumor had been with me since I was born. The post “Pleased to meet you, I...
View Article“The thought of having brain surgery was really scary especially as I was...
My name is Jake Mellor, I am 31 years old and had a right frontal lobe symptomatic cavernoma. Here is my cavernoma story…. I had a seizure on the 24th of September whilst I was getting into bed to...
View Article“This really is every mum’s worst nightmare but I know both my boys are so...
I was first diagnosed with my Cavernoma when I was 18. I was out shopping and felt completely normal - the next thing all I could see was the bottom of a clothing rail. It then felt like I was opening...
View Article“The mental strain of knowing you have so many of them that could bleed at...
In October 2022 I had a fall out of bed; I bumped my head quite hard on my bedside table and had a nasty lump on the side of my head (I am so clumsy!). A few days later I started having bad dizzy...
View ArticleSteve Cairns – Recovering Movement Following Stroke & Brain Surgery, a New...
Join host Steve Cairns as he talks about the changing face of Neuro Rehab and his case study with a Multiple Cavernoma patient. The post Steve Cairns – Recovering Movement Following Stroke & Brain...
View ArticleThe Gut – Cavernoma Connection Emulsifiers and More with Dr. Shelley Stevens
Join Dr Shelley Stevens to discuss the gut-cavernoma connection, the impact of emulsifiers & more! Dr Stevens is a toxicologist, and, being a mother of a child with brainstem cavernoma, Dr....
View Article“I knew my body better than anyone else. I learned to keep asking questions...
My name is Jac Sinnott and I’m 39 years old. My cavernoma was located near my thalamus. I was diagnosed in July 2021 after hospitalisation following a bleed. I presented myself to the hospital with...
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