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I’ve been having seizures since 2015. I’ve had CT scans MRIs EEGs Extended EEG and two EMU video EEGs. My condition has just gotten worse over the years. I’ve tried so many different medications now I take two different medications twice a day. I have been able to drive in atleast 6 years. I have seizures weekly. My doctor says my next step should be a SEEG. Brain surgery sounds like the craziest thing ever. I’m scared of needles let alone surgery.😬
@A MyEpilepsyTeam Member I do want to be seizure free if that’s possible. I’ve never even been able to drop off or pick up my daughter from school 😢
@A MyEpilepsyTeam Member Your very brave. I’m sorry the doctors couldn’t get more info I know that might have been kinda disappointing. I’m going to put you in my prayers and I really hope things get better. Do you know what they will have to do exactly with that surgery?
@A MyEpilepsyTeam Member
Thank you for seeing me as a brave person. I even had open heart surgery when I was a child. It was very disappointing that after having multiple holes drilled in my skull (SEEG) that I didn’t have any big seizures to give the doctors information on my seizures. That’s why I chose to have the RNS surgery as it records my brain activity 24/7 so doctors see everyone of my seizures. The surgery doctors are discussing with me now is the Temporal Lobectomy where they will remove the whole left side of my brain as that is what side my seizures start on. Thank you for placing me in your prayers. I pray you stay seizure free.
If you want to be seizure free then its worth it. The seeg is only really a test to see what's going on. These days there's lots of options so if you don't want major brain surgery that's fine.
@A MyEpilepsyTeam Member Thank you! Can you tell me what happened after? Did the SEEG help you?
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