Post-surgery - Epilepsy Message Board

brownie35 · 03-08-2003, 08:23 AM

I had surgery over 2 years ago now and thought that would be the answer to my epilepsy. It was a total success and I went for 2 years & 2 months without a single seizure. After the first year had passed, I gradually began decreasing my meds. I had been on Gabitril and Tegretol XR. By the 2nd anniversary, I was totally off my meds and thought I was home free. 2 months later I ended up having a seizure at home that was more serious than the usual ones before surgery. (petite mal) My husband ended up calling 911 and I was rushed to the hospital to start all over again. I am back on meds again (not so many this time) and so far have been lucky, no seizures or auras since. I am so disappointed though. I wanted so bad to be completely rid of this problem and now it looks as though I will be dealing with it forever. I know I'm lucky to be seizure free and I'll do anything it takes to keep my driver's license. After losing it twice before, I never want to be in that position again! I am curious about other people who have had surgery and what their outcome turned out to be. I would love to hear from you and compare what you went through.

kayakmom · 03-10-2003, 06:45 AM

SO sorry you had them recur after such a long time free!! Hope the meds hold them at bay from now on. Hang in there. Must have been a huge dissappointment after going through surgery. That is my fear if Sam goes through surgery and it does not control them...

niunia · 03-10-2003, 08:35 PM

2years+ and no seizures....that is wonderful....
Don't be discouraged if you have some set back....Continue to do research, learn as much as you possibly can about your type of seizures you have...

lazoo · 03-10-2003, 09:40 PM

They are doing tests to see if my 8 yr. old daughter can have surgery to remove a tumor (non-aggressive). How long did you have seizures before your surgery? What type of tests did they do and what did they find? Where did you have the surgery done? Any complications or anything you can tell me to help me as I try to make this decision for my little girl. If it's not going to stop seizures, then sometimes I wonder if it's worth the risk. I wonder how many become seizure free after surgery forever? Do you know the stats? Her Dr. said it depends on the pathology. In her case, he feels she has a good chance of becoming seizure free. Honestly, I'm more worried at this point as to what it is, which they can't really tell me til they take it out. They are guessing a slow growing glioma. Thanks for any help. How old are you?

brownie35 · 03-11-2003, 10:16 AM

Lazoo, I am going to try and answer the questions you asked me. I am 38 years old, (36 when I had surgery) and I have been having seizures since I was about 11 or 12. I started having them when puberty began for me. I had never been 100% seizure free since the start but I went off my meds years ago when we began thinking of having children. I had read all kinds of info. on children born to women on meds having the chances of cleft palate and lip. I somehow got through that stage and my youngest was just a year old when I had a seizure at work that put me back on meds again. Years passed and I tried all different kinds of meds with no luck. I had lost my license and had reached the point of never getting it back if I couldn't get my seizures under control. That meant the world to me and I would do anything to drive again. That's where surgery came in. There were numerous tests that I had to go through before even being considered. I was admitted to the hospital for a week to be watched closely. I had to be hooked up and they monitored me closely on camera and started to decrease my meds in hopes of my having a seizure for them to observe me going through. I was lucky and ended up having the seizures they needed on camera and they were able to see from start to finish how they were for me. Not only that, but I had all kinds of other tests to go through during that week and I honestly can't begin to describe each one to you. Memory is a big thing with this surgery. My problem is in the left temporal lobe. It was in one single area and not in different places so that made it easier for them to go in and remove it. From what I understand, not every person who has this surgery will come out of it completely seizure free. I was told that I was the perfect candidate for this surgery all around and everything pointed at my being seizure free but that didn't mean that years from now I wouldn't suddenly end up having one out of the blue. I had my surgery in Portland, ME but I have heard that they are no longer doing that here in ME because the doctor who was with me has now moved to Las Vegas to start up an epilepsy program there. The last I heard, the closest place for a ME resident would be in Boston. Like I described in my letter, even though I ended up having one seizure after 2 years had gone by, now that I am back on a small dosage of one med, I have been lucky so far and had no problems since. So overall, the surgery was definately a success for me. I hope I answered some of your questions. I know exactly what it feels like to wonder and not completely understand what's ahead of you. If I can be of any help at all, just let me know!!