Connect with others who understand.

sign up log in
About MyEpilepsyTeam

Connect with others who understand.

sign up log in
About MyEpilepsyTeam
Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

What Has Been Your Experience With Surgery?

What Has Been Your Experience With Surgery?

Every neurologist I have seen tells me I need surgery to control my seizures. I have temporal lobe epilepsy that causes complex partial seizures. I've been through four different medications and still do not have control over the seizures.

I don't know if my condition is progressing or if the medication is causing me problems, but either way, I have noticed that I have forgotten a lot of things and my thought process is slower than it used to be. It's driving me nuts. I used to be the top of my… read more

posted almost 6 years ago
A MyEpilepsyTeam Member said:

Reading again, four medications is nothing from the amount of medication available for you to take. There are lots of different types of ways that medication works so you will go through lots more before you might find the one that suits you best. I've had epilepsy since 1974, if I may ask, have you just been diagnosed?

posted almost 6 years ago
A MyEpilepsyTeam Member said:

I know the feeling....Except my neurologists over the years were not saying the surgery aspect. But I have been thru 9 medications now. I'm taking 2 medications now. But have dealt with 9 over the years that were not keeping the seizures under control. Thankfully the duo of meds has been keeping the Grand Mals under control but have still been having the absence seizures. And yeah I know the memory deal too. My memory has been getting worse over time it seems too. I have absolutely no recollection of certain events that have occurred and such. Anyways, for the surgery aspects, I have now had brain surgery twice. First one was in 2012, where electrodes were inserted but I stayed in the hospital for I think it was 9 days for observation. We wanted to find out exactly where in the brain the seizures were coming from. Found out they are coming from the temporal lobes as well, except from both sides of the head, which isn't that common. The 2nd brain surgery I had was in 2015. I had a new Neurostimulator implanted. I have the RNS, Responsive NeuroStimulator. It was just cleared by the FDA in 2014. It's the first of it's kind with the style of stimulation it does. It only stimulates when it is needed. It responds to brain activity. Getting the RNS was probably 1 of the best decisions of my life! It has knocked down the frequency & size/strength of my absence seizures tremendously compared to before having it.
So you're not alone in the memory feeling, trust me on that. And definitely not alone on getting annoyed with the pharmaceutical world either. But for surgery experiences, so far mine have been good and come out with good results. (sorry about the essay here.lol)

posted almost 6 years ago
A MyEpilepsyTeam Member said:

I had surgery about a year ago and your memory does not come back it just doesn't get worse

posted almost 6 years ago
A MyEpilepsyTeam Member said:

Yes, I have had surgery but that was way back in 1999. I had no other choice in trying to get rid of the seizures. The surgery that I had was not as advanced as it is now. I know people who have had the current surgery and they have no more seizures. It's hard to say if all of your memory will come back because everyone is different Mine did not but it did stop my seizures with medication and I was able to find out what was causing them. That helped me a lot with new medication.

posted almost 6 years ago
A MyEpilepsyTeam Member said:

I have temporal lobe epilepsy too. It seems that whenever I have a seizure, the longer it takes me to fully come around, and my memory (short term) is worse with each seizure. My last one was in July, and then almost a year before that. Hopefully, yours go away. My mom had epilepsy and her last seizure was when I was 15. I am 49 now. So hopefully they will all go away.

posted almost 6 years ago
Already a Member? Log in