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Weaning medication after temporal lobectomy/epilepsy surgery

Did any of you wean off your epilepsy medication after temporal lobectomy? How did you decide whether or not to go for it knowing that seizures could reoccur? Were you worried about seizures reoccurring and your epilepsy becoming intractable again? Did you have to go back on medication?


I’ve met two people who had

I’ve met two people who had an initial resection (one as early teen, one late teen) and seizures recur many years later. One had a second resection and has been seizure free for many years and another was considering it (he moved far away and I didn’t hear if he opted for another). This is something you should talk to the surgeon about. TLE generally has excellent outcomes but your mileage may vary. Our child’s neurosurgeon’s approach is to answer all questions because if you are ready to ask, you deserve the answer. Sometimes the answer is upsetting, sometimes they don’t know. The surgeons and staff can be brutally honest as they can’t wish things away. Our kid doesn’t always follow the common path, it can be frustrating. And yet, she’s doing pretty well right now, hoping things stabilize. Our child’s surgeon specializes in epilepsy but we see him for something else. 

Previous to my right temporal

Previous to my right temporal lobectomy I had a couple of status seizure episodes after my doctor and I agreed to attempt weaning off meds.  I will never try that again.  Also after my surgery I had some monthly seizures so it was not an option to try to get off.  But I plan to try RNS in my near future.  My long term goal is that I may lower the dose of the the Dilantin I am on but I plan to never attempt to get off.

Michael's surgery was on his

Michael's surgery was on his right and mine was on my left. The answer, in my case, is no. No weaning off medication especially given we knew there was a very tiny piece we could not remove. My mapping was so close to language and speech and memory that we really pushed the envelope in removing as much as we could and left a really tiny fraction in place. We repeated my language mapping during surgery because three areas had looked uncertain.Thanks to being able to answer questions during surgery while my neurosurgeon was able to make actual contact with those three areas, we were able to remove 2.5 of those 3 uncertain areas, in addition to the remaining areas that had passed the test.As a result, that tiny 0.5 of that single area that had to remain in place is the reason we didn't lower the medication. And as you can guess, even if I don't have another seizure I still won't touch the meds. So it comes down to specifics. Some patients are able to do it because of their specifics.As Amy Jo said, speak with your neurologist about the specifics surrounding your scenario. The decisions are usually based on things like how much they were able to map; where that mapping was centered; how much they were able to remove; maybe things like how long the individual has had seizures etc. I think the longer someone has had seizures the more probable it is that they may not want to interfere with too much of the medication. But again, speak with your neurologist and your neurosurgeon. Don't feel like you have to make any rash decisions.

I had my lobectomy done 25

I had my lobectomy done 25 yrs ago and don't recall any headaches afterward.  I asked my memory expert (mother) and she too said she doesn't recall any problems and I recovered quickly. The one mild problem that surgery did cause was a loss of peripheral vision to my right eye.  But because it is in the upper inside corner I did not notice it until they did post-op tests.  It doesn't bother me.  I'd like to know more what is done with laser ablation.  The doctors at the clinic I was going to never mentioned such a thing.  Then I switched to another clinic where they will be doing the RNS implant and treatment.  At my first visit in September the doctor mentioned laser ablation but didn't go into it as we were more interested in RNS.  Do they target a smaller spot when they do laser? 

I did not.  I am still at max

I did not.  I am still at max doses of meds, but I am in more control of it.  I actually changed my diet as well and went gluten free (I also ended up finding out that I am gluten sensitive.  I did this about a year after surgery. prior to that, I was still having a lot of seizure activity.  At least now I only have auras and like I said, mostly in control.  I can drive again and continue to be on a board overseeing a multi-million dollar company.Later,Racer

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