My story started when I was 13 and my Aunt had a bleed on the brain. One year later my Mum had the same bleed from the same kind of growth – they both had cavernomas. So the Drs advised it was probably genetic. Having been suffering from migraines they asked if I would mind being scanned. A scan showed that I did indeed have a cavernoma and they suspected a certain gene was causing this. So no long drawn out diagnosis – lucky for me. It wasn’t until I was 17 that my cavernoma started to cause problems and started to regularly bleed, causing me various stroke symptoms over the years. It was after my 5th stroke that my surgeon gave me the details of CAUK. Wow! To finally find a whole huge family of other people that were suffering from these things felt amazing. We had felt so alone before this what a find.
My 6th stroke brought with it more symptoms and the option of surgery and genetic testing. The testing showed CCM1 in both myself and my Mum. I can honestly say I don’t know how I would have made the surgery and genetic testing decision without the help of CAUK. I watched the videos from past forums. I attended the forum, and other talks arranged by them as well as discussing options with other members who had surgery or gamma knife or who were making that decision too. I didn’t feel so alone with the decision. I decided 2 things; 1) I was having surgery and 2) I was going to shave my head and raise money for CAUK. So in March 2014 my head was shaved and shortly after I had the surgery.
I have recently started working again, I retrained in between stroke and surgery and I am now self employed with my own little business. Cavernoma and surgery isn’t the end of the world – it’s the start of a new life and CAUK brings many new friends with it. I still keep in touch with the members and staff regularly and love catching up them all at the forums.
Nikki gave two inspiring radio interviews talking about cavernoma and the headshave. One with Radio Verulam (11/02/2014) and another with BBC Three Counties Radio (12/02/2014). CAUK thanks Nikki Evans, Radio Verulam, BBC three Counties Radio and the interviewers for supplying and giving permission to use these interviews.