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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

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 over 5 years ago
A MyEpilepsyTeam Member said:

I believe it was craniotomy but possibly Corpus callosotomy. It started with a C. Very painful and alot of stuff happend that was very unexpected. it has been a year now so we'll see if things start to get better hopefully. Seizures are not gone yet. Less intese but more frequent for awhile. I use to have Grand Mal every other month but after the surgery it was Peti Mal every other week on average. My brain is still healing, the Dr. said and I have gone a month with no seizure. I have tried every medication in the book so surgery was my only option. I'm not a Dr. but after 30 years with seizures I'm going to say that your memory is worse do to the seizures. I was and still am very forgetful do to seizures. I don't regret the surgery at all because they told me it would take awhile for everything to come together.

posted over 5 years ago
A MyEpilepsyTeam Member said:

It was very painful afterwards. Lots of unexpected surprises, like having to walk again because my balance was so off and week. I studered for about a month or 2 after the surgery. I have a muscle and back problem we think from the SI joint not going into place when I started to walk again but not sure. As far as seizures they were more of them but less intense. I went from all grand mal every couple of months to peti mal every couple weeks but I have gone almost a month now so hopefully I am on track. Plus starting to take me off meds soon

posted over 5 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 over 5 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 over 5 years ago
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