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mimmy317
02-04-2003, 02:21 PM
My daughter24, has had seizures since she was 13 months. 3 years ago her seizures became uncontrolled.
She has had many meds changes and now the dr says she has only a 10% change of meds controlling her seizures.
They are now running tests to see if she can have surgery. Her seizures are coming from the left temporal lobe. Has anyone else had this done? Can you
tell me about your experience. (either the epilepsic or caregiver) She has terrible headaches now & I'm concerned about this too. Please give info.
you can also email me at [email protected]
Thanks

lazoo
02-04-2003, 08:35 PM
My 8 year old daughter also has seizures originating out of the left temporal lobe. She has a tumor there and is being evaluated for surgery. What are your daughter's seizures like and what medications has she tried and what is she currently taking? My daughter is moving her dosage up of Keppra to 250mg 2 X day. She is still having seizures. Welcome to the healthboards! lazoo

mimmy317
02-05-2003, 07:57 AM
My daughter has different kinds of seizures. She falls,
she will be walking & she will hit the floor. She chews, mummbles, right side jerks, her hand goes into unuall positions. She will make bicycleing motions with her legs. She is scared for no reasons. Especially between seizures. Common items, she will not reconize.
She takes tegratol 1200mg/day and lamictal 700mg/day.
She also takes headache meds but I can't remember their name. They are going to run tests to see if her seizures are coming from the left side or the left front. If they are coming from the left front, they cannot operate.

mimmy317
02-05-2003, 11:34 AM
I forgot to tell you what she has taken.
She started out with phenobartial until she was five yrs. then she was changed to dilantin. From the ages of 5 thru 10 she was seizure free and stayed on dilantin. She started seizures again at 10 (mostly at night) At 12 they started changing meds again.
I'm sure I don't remember all of them. But the ones I can remember is keppra, depakote, topamax, zonegran,

MrsPepper
02-12-2003, 05:52 PM
I also have left temporal lobe epilepsy. I was diagnosed about 8 years ago and had surgery less than a year ago. One of the tests I had done shows which side basically deals with memory and so forth. Mine is the left. Before the surgery I was told I may lose some memory which I did. I have problems remembering what people have told me, what I read, people's names, the words for things, etc. As they could not find any scars or anything on any tests before the surgery I got a lower percentage rate of success.

Unfortunatly the surgery did not work and I still have seizures. Please don't just take this as a negative comment on the surgery. I do admit I find the problems I am having frustrating at times however I AM glad I had the surgery. If I didn't I would be wondering for the rest of my life if it would have worked.

If you have any questions for me at all please don't hesitate to ask. You should also remember that not every surgery will be the same. Just because I've had these problems doesn't mean your daughter will. Make sure all the questions you have you also ask to the surgeon.

sekharp
02-12-2003, 06:48 PM
Hello. ... My doctor has told me that, even with medication, we may eventually have to do surgery anyway. He says this is because of where he thinks the seizures originate. Betting on statistics, he said, he would guess it's the right temporal lobe, but it could be the right frontal lobe. Because I have not shown any hippocampal or mesial temporal sclerosis on regular protocol MRIs, he warned me that such surgery is not as effective when a specific lesion cannot be located. (Hopefully a volumetric MRI or a PET scan would show such abnormalities.) I do, however, have a history of convulsions as a child that were severe enough to cause some brain damage. I am being weaned off Dilantin and put on Keppra, supposedly as monotherapy. Eventually, he would like me on 2,000 mgs a day. If the Keppra doesn't work, then we could go to Lamictal or Zonegran. (I have simple partial seizures that were controlled on Dilantin, plus complex partials, some with secondary generalization, at night.) Basically he told me that it's up to me when I want to quit medication and try something else. I go in for a video EEG study next Tuesday (Feb. 18), so I will know more then. I am kind of worried right now but also know that surgery is a long way off right now and there's always the possibility that the video EEG will help the doctor give me a better plan. I am just starting the Keppra so we will have to see. ... (I can't believe the drowsiness! After one half of a 500-mg pill. Wow.) ... Not so much looking forward to the "Kepp-rage" some people have mentioned. But the seizures are worse, I guess. Thanks.

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All of us has an angel, if only we know where to look.

mimmy317
02-27-2003, 06:04 AM
Sekharp- how did the video EEG go? Did they find anything out?

kayakmom
03-01-2003, 06:44 AM
Sam is having the work up to see about surgery candidacy too. He is not happy to be going through the testing and is scared at the thought of surgery. We are taking it one test at a time and will not push surgery unless he says it is the way he wants to go. Not controlled on any med right now. Simple and complex partials, nocturnals, waiting to redo the VEEG, then on to PET, SPECT, WADA etc...scary but they have come so far with surgery. SOmetimes it is wonderful, sometimes it does not help. SO very frustrating...

sekharp
03-01-2003, 04:46 PM
Mimmy, you can see the story with this under the thread entitled, "sekharp and VEEG." Basically, it yielded zero results because -- despite being off all medication -- I failed to seize. What luck. And because my Paxil was stopped, I had a great time throwing up most of one night. We are back to trying different drugs (read: Keppra) and waiting. I go in Monday (March 3) for a 72-hour ambulatory EEG to be set up. Maybe it will capture an event. We will see. ... There was some mention of irregular slowing in the frontal lobe but I guess nothing much beyond that in the interictal periods (which, really, was the whole time I was there). Does anyone know what they mean by "low-amplitude fast background"? Thanks.

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All of us has an angel, if only we know where to look.