Raspberry

[E---]

Hi I was diagnosed with having a cavernous at the back of my brain - this was six years ago when I was 49 years old . At the time of my MRI scan ( which was done to determine if I had a stroke ) it was actually bleeding and referred to as being Active Cavernoma . No follow up was given- only an increase in the dosage of my Blood pressure tablets - my doctor said I am technically a walking Time Bomb waiting to go off in addition to 4 mini strokes evidence on the MRI - well being honest I am glad I am a laid back person because I just shrugged it off but my memory as far as Names and Numbers go - is getting worse and I wonder if that's because of the Cavernoma or not ?? You will all understand what I say is I am sorry hearing that other people are affected by them but equally relieved I don't stand alone in this . 😐

[EmmaJ70]

Hi - it can be scary when first diagnosed but there are lots of us. The best place to get advice and chat to people in a similar situation is on Cavernoma Alliance UK secret Facebook page. To access it you need to register at cavernoma.org.uk/about-us/

It's free to register and they will offer to add you to the secret Facebook page. Hope that helps.

[E--- in reply to EmmaJ70]

Thank you EmmaJ70 I will do and thank you for your friendly advice . Elle

[Rod70]

Hello E - I was diagnosed with a third ventricular Cavernoma in September 2016. It was removed by surgery but one of the side affects I suffer from is poor memory short to medium term. Apparently the Cavernoma impacted the ‘route way’ for how memories are stored. I work around this by using copious notes on my phone, taking pictures etc. to remind me where, for example, I park the car. It is deeply frustrating but something I have to live with; I can no longer do my job so I am essentially retired before I have reached 50. I have found things to do in my local area that I volunteer for which have helped with my sense of being. Best of luck with it all and reply if you wish to learn more about how I have adjusted.