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Post surgery issues
Thu, 12/31/2009 - 14:35Topic: Epilepsy.com Help
My daughter had a left temporal lobectomy over 2 years ago. Since the surgery the seizures have seized completely. Right before Thanksgiving she had an episode at school. I was not convinced it was a seizure but of course took her to the neurologist for an EEG. The EEG came back abnormaldue to the presence of right frontal, central, and temporal regions and also independent spike and wave activity seen on rare occurance in the left temporal region. My concern with this is the last statement in the report regarding the left temporal region when my daughter does not have a left temporal lobe. The doctor wants me to put her back on meds and I am very nervous without knowing exactly.
Re: Post surgery issues
Submitted by bicycleptic on Thu, 2009-12-31 - 15:23
First I will state I am not a doctor. I assume you meant to say that the seizures had stopped completely since surgery.
With that in mind I recommend she goes back on medication with plans on remaining on it for the rest of her life. I had a left temporal lobectomy in 2001 myself. I am still on both Keppra and Depakote ER. I only have had one seizure since surgery and that was two weeks after phasing off of Keppra. I immediatley went back to taking it.
I am an epilepsy advocate, I talk to people in an online chat room twice a week so I have met thousands of people who have had surgery. I only know of one person who has stopped taking medication completely and remained seizure free long term.
In many cases one will remain seizure free for several years after stopping there medication but when the seizures return they are more extreme then before and they cannot be contolled by medication after that. With that in mind in my opinion it is not worth the risk for me to ever try phasing off of my medication again. I would rather live with the medication then try to live with seizures.
Talk to her doctor to verify this but odds are they did not remove her entire left temporal lobe. They removed merely the portion where the seizures focal point was and as much as they could without affecting speach or anything else.
Bryan
First I will state I am not a doctor. I assume you meant to say that the seizures had stopped completely since surgery.
With that in mind I recommend she goes back on medication with plans on remaining on it for the rest of her life. I had a left temporal lobectomy in 2001 myself. I am still on both Keppra and Depakote ER. I only have had one seizure since surgery and that was two weeks after phasing off of Keppra. I immediatley went back to taking it.
I am an epilepsy advocate, I talk to people in an online chat room twice a week so I have met thousands of people who have had surgery. I only know of one person who has stopped taking medication completely and remained seizure free long term.
In many cases one will remain seizure free for several years after stopping there medication but when the seizures return they are more extreme then before and they cannot be contolled by medication after that. With that in mind in my opinion it is not worth the risk for me to ever try phasing off of my medication again. I would rather live with the medication then try to live with seizures.
Talk to her doctor to verify this but odds are they did not remove her entire left temporal lobe. They removed merely the portion where the seizures focal point was and as much as they could without affecting speach or anything else.
Bryan