Join CAUK today


Support CAUK today

Contact Us

Phone or email

“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…

A few days later, I decided that I should go to the doctors as I really wasn’t feeling OK or myself.  During the consultation, my doctor said he thought I should have a CT scan and it was booked in for a few weeks.

The radiographer looked concerned and told me that I had to be admitted.  She said she could see something on the scan, and a doctor told us he thought I had had a bleed on the brain.  This really put the fear of god into me and my family.  I was admitted overnight and a MRI was carried out the next morning.  After that scan, I was told that I have 2 cavernomas in front and left frontal lobes of my brain.  I learned that they had BOTH bled, but I was sent home and told to do “everything in moderation” while I waited for an appointment.

I was in total shock and I was given no additional  information about the condition at the time.  My nephew had also been diagnosed a few years prior, so I had actually already heard of cavernoma. I had to wait a few months until January for a letter to say I was on a waiting list, and when I called the hospital to see how long the waiting list was I was told approximately 27 weeks.   With the letter, they enclosed some CAUK leaflets, which I initially thought was a cop-out, and I really felt like I was being dismissed.

But…. thank god for Cavernoma Alliance UK, their Facebook group and all the information they have provided me! Before I found the charity, I felt like I was so alone.  No one seemed to understand invisible illnesses, and the mental strain they can put on you – but CAUK have educated me and I know if there comes a time I really need support they will be on the end of the phone to help.

As I was experiencing difficult symptoms like days-long headaches and numbness and tingling in my face I asked my doctor to write to the hospital to see if they could see me quicker.  I finally saw someone very recently and was told that I didn’t infact have just 2 cavernomas, but that I had top many to count throughout my brain, including on my brain stem.  They said that  they didn’t think any of them had bled and that they also think they are hereditary

I asked a lot of questions but I was so upset to learn how many cavernomas I have that I can’t remember half of what the doctor said.

I know I am lucky to have limited symptoms but, as most of us know,  it’s a “wait and see” game with cavernoma.  The mental strain of knowing you have so many of them that could bleed at any time is torture. It’s a comfort to know that I can contact Cavernoma Alliance and get support whenever I need it.