Advise please: CAVERNOMA: My 20 years... - Cavernoma Allianc...

Cavernoma Alliance UK

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Advise please: CAVERNOMA

Brooksideng profile image
4 Replies

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?

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Brooksideng profile image
Brooksideng
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4 Replies
Catherine2016 profile image
Catherine2016

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

Rod70 profile image
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 profile image
Brooksideng in reply to Rod70

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

Rod70 profile image
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.

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