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should I try it again?

Wed, 08/06/2008 - 16:19
I have had epilepsy for 42 years. I have tried experimental drugs, the vagas nerve stimulator, and the last was temporal lobe surgery. I know other people have it much worse than I do, but I feel my quality of life is zilch. I have an appointment set up with my neurologist for next week; I'm going to ask him to set an appointment up with the neurosurgeon who did the first surgery. My neurologist says the chances of improvement are about 50/50. If the neurosurgeon says the seizure focus has moved, I won't go through with it; but if it is still in the same place and they just didn't get it all, I'm  going for it. BTW, I am currently on Primidone, Keppra, Lamictal, and Prozac. The side effects are overwhelming. I would appreciate your input.

Comments

Re: should I try it again?

Submitted by AthenaBoo on Sat, 2008-08-23 - 09:34

You posted this back on the 6th, but you may still want some feedback...

Yes.  If you're open to it, and you seem to be, try it again!  50/50 isn't too bad if you consider the alternative is trying more of what hasn't worked. 

I've had 2 RTL.  I tried VNS and been a part of a couple of studies.  The first surgery they removed my right hippocampus and part of the amygdala.  The second one was an anterior temporal lobectomy and he scraped off a little more of the amygdala.  (He said removing the entire amygdala is dangerous because it's so close to a very critical area.) The first surgery (May 07) didn't work.  My second surgery (Dec 07) worked much better.  If you didn't have the internal grid video eeg monitoring they'll probably want to do that.  I had the internal grid monitoring for my second surgery.  They found the area and out it came.

I'm still having seizures, but I'm glad I had the second surgery.  While they're annoying, they're SP rather than CP and I have full control of myself now.  Prior to surgery my aura was deja vu/dread.  Now, my aura/seizure is I smell something.  Usually marijuana or cigarettes.  Given the choice, I'd have that second surgery again. 

You posted this back on the 6th, but you may still want some feedback...

Yes.  If you're open to it, and you seem to be, try it again!  50/50 isn't too bad if you consider the alternative is trying more of what hasn't worked. 

I've had 2 RTL.  I tried VNS and been a part of a couple of studies.  The first surgery they removed my right hippocampus and part of the amygdala.  The second one was an anterior temporal lobectomy and he scraped off a little more of the amygdala.  (He said removing the entire amygdala is dangerous because it's so close to a very critical area.) The first surgery (May 07) didn't work.  My second surgery (Dec 07) worked much better.  If you didn't have the internal grid video eeg monitoring they'll probably want to do that.  I had the internal grid monitoring for my second surgery.  They found the area and out it came.

I'm still having seizures, but I'm glad I had the second surgery.  While they're annoying, they're SP rather than CP and I have full control of myself now.  Prior to surgery my aura was deja vu/dread.  Now, my aura/seizure is I smell something.  Usually marijuana or cigarettes.  Given the choice, I'd have that second surgery again. 

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