Cavernoma Awares

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…

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.

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.

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.

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.

Carly shares her story of how her persistent headaches led her to an eventual cavernoma diagnosis, despite several dismissals that her pain was ‘just a migraine’. 

When we last heard from Vera back in June she was waiting for a date for surgery to remove her cavernoma. Fast forward a few months and Vera is now recovering from this major surgery. She has kindly shared an update, detailing her experience of neurosurgery.

31 year old airline captain Laura was diagnosed with a cavernoma in June 2022 just ONE DAY before the early birth of her now 4 month old baby boy Karl-William via C-section. Laura’s situation meant doctors had no choice but to perform brain surgery to remove a bleeding cavernoma shortly after the arrival of her baby.
Laura has kindly shared her cavernoma story to raise awareness of her condition and inspire others in a similar position.

Leanne Gray was initially diagnosed with a cavernoma in her cerebellum which bled causing multiple symptoms.  She later discovered she has the familial (genetic) form of cavernoma and has since grown several more cavernomas all across her brain.  Leanne tells her story of how she has learned to cope with her condition and the uncertainties it brings and live fully and happily at the same time.