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I had brain surgery

HI, I used to be long to this group but I had to leave becasue I got really sick that i got really nasty with people and I just had to go. Well the problem was an huge increase in seizurez activity, that we were not aware of at teh time. I was doing weird things, adn had some bizarre behavior that we hd to get looked into. I went back to my neurologist adn he ran tests and yes my seizures were inceased adn by the way I have complex PArtials with secondary generalization. They decided that I was a good cadiadate for a VNS and so I was put on teh list for one adn then had it put in and for a month it workd but after that my seizures were out of cpntrol adn they decided to put me back in the EMU for a seocnd time and caught 3 staring seizrues and 3 major seizures, adn decdied 7 weeks later that they had to brain surgery adn I had no say in it I had no choice in the matter, It was going to be done. So I had it done they did a Left Temporal Lobectomy on me and I lost 2.5 inches of my left temporal lobe. And it was not a complete success becaseu they couldn;t get the aread that was near the speech center, and they got the other 2 foci, ythough. My speling is a result of the surgyry right now. IT is hard to deal with my own 16 week recovery when . it is hard. let me tell you. I have the Clash having a concert on my head and it hurts. I take 3600 mgs of Neurontin (max for epilepsy), 400 mgs of Lamictal, 200 mgs of TOpamax, and 2 mgs of Klonopin. And Ativan if needed to stop seizrues. They wills tart to reduce the drugs onteh 16th at my appointmeny but I will alwasy have totake meds and will always have seizures and will always be epileptic. IT stinks. Nancy

Comments

Re: I had brain surgery

Hi Nancy,

When I went through surgery I felt there was basically no choice because I was having up to hundreds of seizures a day. and going into status more and more often. The Drs also told me that I probably would have seizures continue after the surgery, and would have to take meds the rest of my life. I am still taking meds but after a couple months from surgery I stopped having seizures. As the swelling goes down the seizures may lessen. I didn't like feeling the choice was no real choice. My Dr lied to me to convince me to go through with it. He said it would all be better in three weeks. Not quite. But looking back I am glad I went through with it. It took about six months for reading, speech, and writing to slowly improve from surgery.

Re: Re: I had brain surgery

Hi, my name is Sarah and I just recently had brain surgery. I was curious to know where you had your surgery at? I would like to talk to you and share my story with you.

Re: Re: Re: I had brain surgery

Hi-
My name is Stacey and I was wondering what surgery was like for you. My neuro suggested it and I'm not going for it.....yet. You said you had it on your temporal lobe. That's one of the places that my seizures are coming from and I'm just curious what you had to go thru. Hope to hear back from you!

~Stacey

Re: Re: Re: I had brain surgery

I had surgery in the left temporal lobe. I had a gangliaglioma tumor removed as well as some of the surrounding area. It was in the lower back of the temporal lobe an area mostly used to assimilate information. It was done at Kaiser Permenente in Redwood City, California. Where was your surgery?

Re: Re: Re: Re: I had brain surgery

Pretty son, I will have brain surgery in Stanford University Neurology Hospital. I'm praying it's going to work out but I'm NOT sure how it's going out to be. In any case, something needs to get done, what ever the out come. Living with seizures, I had it.

Re: I had brain surgery

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