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Deciding whether to have surgery, and if so, where?
Sat, 10/18/2014 - 17:06I know this is a long post, but I have a lot in my mind and need some help.
I'm 26 and have had epilepsy my whole life. I have gone through periods in which I do great and don't have auras for weeks or months, then others in which I have them on a weekly basis. I have taken Tegretol, Carbatrol, Trileptal, and now Lamictal. If I'm not mistaken, the first three come from the same carbazepine base so I guess they should work similarly. I admit that there have been times when haven't been too reponsible causing my levels to be low. However, I still wouldn't get frequent seizures, just auras. Until 2010, I had had 4 seizures. Since then I have had about 8. My auras have never gone away 100%, I just got used to them.
Last year I had a seizure caused by low levels. I went to see a neurologist and his first reaction was to increase my Trileptal dose. I did, but it made it worse. All day I felt as if an aura was about to start but it never really did. I then changed to Lamictal. A few weeks later, I had started to lower my Trileptal too soon so I had a low level for a couple of weeks, and I had a seizure even bigger than the previous one.
A few weeks ago I had a another one. This time my levels were fine so it shouldn't have happened. I had had an aura one or two days before, and I have had 2 or 3 since then. My doctor thinks that my epilepsy is progressing and/or I'm not responding to medication. His proposed solution is surgery, and he keeps saying that I'm a good candidate for this surgery. It's a really scary thought, and I'm kind of hesitant. I want a second opinion, but I don't know where to get it. I wonder if I should try going back to one of my old meds with a higher dose, but maybe he fact that I felt worse when I had the highest dose of Trileptal, the same thing would happen with the others. Maybe surgery is my best option, I don't know.
For anyone who has gone through left-temporal lobe surgery, is it worh it? What has your experience been like? Does anybody know of a good place where I can get a second opinion? Any bit of advice would help. Thanks!
The testing is what really
Submitted by Anonymous on Sun, 2014-10-19 - 03:37
The testing is what really tells you how ideal a candidate you are. I don't know if you should be considered refractory with all the failed meds having similar effects, even if lamotrigine is different from the others. It would be a bummer if those were enough, my kid is on two of those medications and may not get full control. The consideration you are progressing is a weighty matter... or if you know you have mTLE, that would another strong reason to explore surgery. So the neurologists should know your case specifics and be able to outline the basic pros & cons. The testing should give the surgeon good information about which approaches would work and the chances of a good outcome. The surgeon's opinions are better than talking to another neurologist, imo. But there are surgical options that weren't available five years ago, so ask if you would be a candidate for procedures they might not do at your hospital.