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Advice on right temporal lobe surgery

Wed, 10/26/2016 - 03:59

Topic: Surgery and Devices

Hi there, Just looking for some advice and people's experiences with right temporal lobe surgery. Specifically if it stopped seizures completely and if medication was no longer necessary :-) I am considering it as an option as none of my medications have worked so far. I am at the stage where I am about to go for the video EEG to see if I am definitely eligible for surgery. So far my doctor thinks I am though. I can't drive also which is a big issue for me. Here's a bit about me: I am 27 years old. I'm currently on 1500mg keppra twice a day, 200mg lamictal twice a day and also also 200mg vimpat twice a day and still not controlled. My neurologist recently suggested surgery. I was not at all open to it at the time but now I'm starting to think I might be - especially since I haven't found a drug yet that has worked. I average seizures once daily - once monthly. They are normally either simple or complex partials. I'm very lucky it isn't worse but at the same time it could be so much better :) I have auras more often though. Anyways, I want to hear your stories with surgery! Whether successful or not, good or bad and whether you are still on medication after the surgery. My aim is no seizures, no auras and driving again! Also to go medication free in so I can start a healthier life! Looking forward to hearing from everyone!

Comments

Hi Charly,Thanks for your

Submitted by anzella_1267 on Mon, 2017-03-20 - 20:41

Hi Charly,Thanks for your post and sharing your story :) I wish you the best of luck in your journey to seizure freedom!!

Hello Anne, I posted as Anon

Submitted by CrazyMikey on Sat, 2017-04-01 - 02:49

Hello Anne, I posted as Anon 21 days ago. Yeah, it did eliminate my worst seizures but not much though cause I still had grand mals but not as much. I grew up having 1-8 a day then after the surgery came 1-3 a day. Hardly ever I would go a day without a seizure until I was about 22 years old when I started seeing a new neurologist cause I outgrew my other one and finally one showed up for adults here in our city. lol The bad things about the surgery erasing my memory is that I'm not good at remembering words. Especially long ones. I grew up being a words and numbers freak. lol but now I'm just good with numbers but not as good as I use to be. I use to be able to do double digit multiplication in my head in seconds but not anymore. since the surgery I have had PTSD, panic attacks and hypnopompic dreams. When I had the Right Temporal lobe surgery, I had a 63% chance of them getting it right but I guess I wasn't one of the lucky ones back then. I've never been lucky anyways. lol I'm from a dysfunctional family on my moms side and super smart family on my dad's side while I'm the only one in the family that has ever had epilepsy. My parents divorced when I was 6 cause my mom cheated on my dad and then married the guy after the divorce and then took me away from my dad and family for 5.5 years which led to my epilepsy, my first stepdad beating me and forcing me to do things that I didn't want to do and then he cheated on my mom. Then she married my second step dad when I was 13 right before the brain surgery and right after the surgery he did the same stuff that my first step dad did to me while I was recovering from the surgery at home. Lots of yelling while trying to relax and get healed but think of it as going through boot camp or a military camp while recovering from the brain surgery which led to me having PTSD, panic attacks, Todd's Paralysis and much more. :-)

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