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“I knew my body better than anyone else. I learned to keep asking questions and always get a 2nd opinion.” Jac’s Cavernoma Story

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 persistent symptoms which a couple of different GP practices said were migraines. Initially, my local hospital didn’t know what was causing my symptoms and it took a long time to get answers, especially as we were still in lockdown due to the pandemic.
My most recent symptoms appeared in late June 2021 and they presented as pins and needles down my left side as well as weakness and numbness on that side. I also had visual disturbances. Each episode would last for 30 minutes to an hour. 

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“The mental strain of knowing you have so many of them that could bleed at any time is torture” – Diane’s Cavernoma Story

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 spells especially at night and when I laid down. One night, I got up to use the bathroom and I blacked out. I just thought I had concussion from the bump…

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“This really is every mum’s worst nightmare but I know both my boys are so strong and we can get through this as a family” – Lyndsey’s Cavernoma Story

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 and closing my eyes continuously. I realised I was in an ambulance, and I then remember being rushed down a hospital corridor, then to a hospital room.

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“The thought of having brain surgery was really scary especially as I was expecting a baby in just a couple of months” Jake’s Cavernoma Story

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 watch TV. My partner found me on the floor with blood on my face (I had bitten the inside of my mouth), I was sweating, very confused and couldn’t walk or talk properly. The next day I took my blood pressure which was extremely low, and I generally felt unwell. I originally thought it was due to stress and tiredness with having my own carpentry business, but I couldn’t shake it off so on Monday the 26th of September I ended up in hospital at A&E.

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