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js21
New Member


Date Joined Oct 2008
Total Posts : 2
   Posted 10/23/2008 6:23 PM (GMT -7)   
  I will take you back to the beginnig. I have had temporal epilepsy for 22 years. It was first brought on by a brain tumor that was removed, but the seizures never stopped. For several years I was only having complex parial seizures which always had thier own non specific pattern. about 6 years ago I started having extremely bad tonic clonic seizures that followed my complex seizures (always while asleep) even though I had regular complex partial while awake. My neuro sent me for long term video eeg at the Cleveland Clinic epilepsy center. All my test eeg, MRI and pet scan comfirmed the foci point was in the right temperol lobe. In July 08 I had a right temporal lobectomy. As I was just feeling myself again I had my first cp seizure 8 weeks after surgery, then started having them more frequently while awake and asleep(about an average of 4 a week, but on some days 3 or more a day and alot of auras).I'm still on 500mg Dilantin. I remember the aura, the urge to walk as they started, and the lip smacking as the seizure was ending. My neuro sent me for another stay at the monitoring unit due to a episode that produced a strange buzzing in my ear, temperary hearing loss and a seizure that followed, saying maybe there was more foci area that could have been missed. I was just released a week ago. After I was hooked up with the eeg the unit Dr. upset me by saying well lets get started and see if your having real seizures, and proceeded with there is alot of abnormal acitivity on the eeg I can see it right now as we talk. I had a ictal spect while I was there and four seizures were recorded, one may have been a tonic clonic since my tounge was bitten on the side. Anyway I dont have the results yet, but they told me my case would be presented to the review board again. Anyone have this surgery and if so did you need a repeat surgery? I'm at the end of my rope here. I dont go for my follow up with my neuro until Dec. 9 after my case has been reviewed.

Post Edited (js21) : 10/23/2008 7:49:37 PM (GMT-6)


loveslight57
New Member


Date Joined Aug 2007
Total Posts : 12
   Posted 10/30/2008 4:38 AM (GMT -7)   
Jerry, have you had your dilantin level checked.

js21
New Member


Date Joined Oct 2008
Total Posts : 2
   Posted 11/1/2008 8:02 PM (GMT -7)   
Ya I had my dilantin level checked and it was at 17 or 16 everytime I had it checked. That was once every 2 weeks since Aug. when the seizures started back up. It was also given to me through IV before I left the unit this past time and was at a perfect level. I also had 3 seizures that night. I did get my results back last Friday on the ictal spect and my Dr. says it shows that the seizures are coming from an area adjacent to where the surgery was done. I wont find anything else out until Dec. 9th when I go back to the Dr. But my case is being presented to the epilepsy review board again between now and then. So I will wait and see.

aaminah
New Member


Date Joined May 2009
Total Posts : 2
   Posted 5/23/2009 11:25 AM (GMT -7)   
same prob with me some times ithink im gonna die my doc keeps me in hospital most of the time
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