Neurosurgery

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Today, my neurologist touched the subject on me having surgery for my epilepsy. He insists that I am a very candidate, and that the majority of patients who had the surgery do very well, and really only regret that no one told them about it before. But the truth is I don't want to have the surgery. I don't want to get rid of my seizures. They're something with which I have lived my whole life. I've come to feel that they are mine. I've come to see my epilepsy as something like that accompanies me. I know this is just really so messed up to feel this way. Other people would jump at the chance to get rid of their seizures, but I don't want to. When I told my mom the real reasons, she was very upset.

obviously it is your body to do with as you please, but i hope you consider the fact that epilepsy [in a few cases] if left untreated can progress to something worse over time. why take the risk? is your surgeon concerned that your symptoms may eventually deteriorate?

No, it's more like a doctor's goal is like to cure people type of thing. He said if I am not looking to get better, then why bother coming to see him. I suppose he kind of has a point. But the truth is I really don't want to get rid of my seizures. I've had them my whole life. They're mine. It's so stupid, I know, but I've kind of come to see them as a companion of sorts. A little like I see my pets, my computer, my books. I sometimes get a bit anxious when I haven't had seizure in a long time. Besides, no one really knows what causes AS, do they? If they do this surgery, what effect could it have on my AS? I've always felt very proud to be an Aspie.

it's your life to do with as you please, but people who love you and want you around for your whole alloted time on earth, would rather see you take better care of yourself. epilepsy is nothing to be tolerated lightly, as symptoms progress towards seizures, they tend to get progressively worse until treated. it can be fatal, and if one survives one can lose bits and pieces of their mind over time. you may be one of the lucky ones who remain stable, but how can you predict if this is a certainty or not? why take the chance? just wondering.

How often do you have seizures? Are you on any medication for it? I also have epilepsy, but I take lamictal for it. Epilepsy is not fun, at all. I'm really thankful and grateful that I don't have the kind of epilepsy that would prevent me from playing video games as I am a huge gamer.

I will tell you, if I could get surgery where I never had to worry about having a seizure ever again, if I meant no more medication, and I wouldn't chew up my tongue anymore and have to live off of smoothies after a grand mal (my last grand mal was in July), I would get it in a heartbeat.

As said above, it's 100% personal choice, and nobody has any business telling you what's right and wrong, as there is no right or wrong in this case. With that said, I'd want to sit down and write a list of positives and negatives, and maybe keep that list and add to it for awhile, then look it over later and think about it. Nobody likes to opt for surgery; especially brain surgery (if that's what yours would be), and most of us here hate making any kind of personal change. I understand what you're saying about "being used to seizures and they're yours". I think the same way about a lot of things too. Somehow though, I think you might find out that you'd be able to safely do a lot more things in life, if you didn't have to worry about when the next seizure might come.

Again, I'm not telling you to do or not do anything, and whatever you decide, is perfectly OK.

My sister-in-law had seizures (not from epilepsy, but from some other kind of neurological problem). She was forbidden to drive, or go anywhere she might fall or get hurt (like waiting for a bus or train, etc). She had surgery to correct the problem, and it was successful . She can now do anything she wants, and she can live alone, and in a 2-story house, go anyplace she wants and can do anything, where she could not have been safe before.

Charles

I don't have them too often. My last grand mal was almost two years ago. It was when I was in the hospital for monitoring, so they were trying to provoke it, of course. Then, they said that I would still have to stay on the medication after the surgery, at least for some time, anyway. And while it's true that there is a high probability that they will go away completely, there's always a small chance. Then whatever was the surgery for? Not to mention the time it would take to recover. When I had my gallbladder removed, they made me take 3 wks off work! And with the gallbladder, it was a small surgery, and it was guaranteed. Once removed, the gallbladder stones would never bother me again. And obviously, they haven't. This one would be much more complicated. My seizures come from the hypothalmus, they said, and the hypothalmus governs a lot of things, including sleep, and I've always had sleep issues, as well.

I do not think of you as being "messed up" for thinking in such a manner. If you don't want them treated, you, as a patient, should have that right.

Part of my problem is that my parents refuse to help. The first time this issue was brought up, they did not give me a yes or no answer. And they still haven't. If my parents want me to have the surgery, then I will, but they refuse to say yes or no. If for whatever reason, they do not want me to have the surgery, then I won't. But they won't say either way!

they correctly understand that it is you that has to make the decision concerning your own body. if they were me, i'd advise you to get a second medical opinion from another neurosurgeon or neurologist.

Id second that as well the side effects or the for-mentioned surgery can be more frequent and sever seizures than before the procedure. Another complication can be in curable insomnia. Consider carefully please and do you research on the particular method the the surgeon has in mind.

The surgery would be to remove a portion of the hypothalmus on the left side. I did not know about the insomnia. Like I said, I already have sleep issues. As a matter of fact, I have come to believe that it's quite possible I have narcolepsy. I even get the hypnagogic hallucinations and the automatic behaviors. I have not told my parents of my suspicions. I don't want them to be mad. Then I also have PCOD. I've done a bit of research, and it looks like the hypothalmus also has a bit to do with the hormones from the ovaries.