Any experiences of brain encephalocele or surgery for epilepsy?

[Epilepsy]

Has anyone had any experience of this? I have adult onset epilepsy (started approx six years ago) and until now they couldn't find a cause. Recently it has got a lot worse and my latest MRI shows I have bilateral temporal encephalocele. I understand the only treatment option is surgical, I am waiting for further assessments etc but wondered if anyone has had this issue?

I have also posted in Health, I've posted here for traffic as I know quite a few of us have epilepsy!

Bump for weekend

Sunday bump!

Hoping to bump for you! The only experience I have similar to this is a school family whose middle son was diagnosed with hemimegalencephaly (sp!? Sorry if I've got it wrong) and had very significant brain surgery to detach the half of the brain that was causing multiple daily seizures from the half of the brain that was healthy (apologies if I've described this wrong, I'm not a brain surgeon 😁).

From what I remember he had to have the surgery in two rounds, I think it was complicated by the fact that he was so young (a baby) and therefore his blood vessels were teeny tiny and very challenging to operate on. But the surgery has been a great success at stopping the seizures!

All the best to you. Can your hospital department put you in touch with any epilepsy groups locally if they haven't done so already?

Thank you for your reply @Wingslikeabird! I feel for the family of that little boy as it must have been terrifying, but it's good that it was successful for him.

I must admit when I read up on possible surgery, I got to the words "gently lifting the brain up" and closed the page very quickly! I am in hospital all next week for assessments etc so will see what the consultants say - I have no idea why the epilepsy forums didn't occur to me! Good idea thank you. (I am a member of a local group but ironically keep missing the meet ups due to seizures).

Currently worrying about going cold turkey from my electric blanket in hospital... I am allowed to bring my own pillow at least