Advise please: CAVERNOMA

[Brooksideng]

My 20 years old son was just diagnosed of Cavernoma. He has 3 seizures right in front of me. MRI says it's just one & its right in front of the head. I really do not know what to do, either to manage the Cavernoma or to have surgery. The seizures is so horrible. Can anyone advise?

[Catherine2016]

Have u joined cavernoma UK. It has a members area and have great supports and lots of members with same systems

[Rod70]

Hello, Cavernoma's can take many forms I believe - my own did not lead to seizures, but did cause me to have severe headaches. I had to have surgery to remove the cavernoma from the base of my brain. Personally, although my life has changed massively since the operation, I am still alive and able to function quite normally.

[Brooksideng in reply to Rod70]

Thanks, you said your life has changed massively. Please could you tell me more?

[Rod70 in reply to Brooksideng]

Hello, I am no longer able to work as my memory problems would have made this difficult - I was a Partner in a consulting firm and it was deemed that I would be unable to perform at the level required. I worked away from home most of the time so have had to get used to being at home all the time, and use to a very different role and working as a volunteer with very different people. But oddly in a way, I am learning to adjust and enjoy my life - I set new targets and goals and try to do things I would never have previously had the chance to.