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Selective Amygdalohippocampectomy
Mon, 11/07/2011 - 23:48Hello,
My name is Dasha and I have complex partial seizures in my left temporal lobe (hippocampus). I have been on ten different medicines in the last 3 years and none of them have controlled my seizures (if they did, the side effects of the medicine were too difficult to handle). I am at the last step of being able to treat my epilepsy and my doctors have recommended that I strongly consider the surgery. If I decide to go through with it, I will be having the selective amigdalohippocampectomy. I have been told that I'm a great candidate for this surgery by the doctors (but obviously the thought of having brain surgery isn't exactly easy to swallow).
Has anyone on here had this procedure? If so, what advice can you give me about either going through it or not? Would you recommend it? What side effects did you have?
My biggest fear is that i'm a visual designer and i've been told that you can suffer from vision problems after the surgery. I'd like to know if anyone has found this to be true as well or if it's only minor deficiency in vision loss.
Any advice you can give will be greatly appreciated. Thanks!
Dasha
Comments
Re: Selective Amygdalohippocampectomy
Submitted by dashaday on Wed, 2011-11-09 - 03:21
Kevin -
Thanks so much for sending me a link to your experience! I read it and am so glad to hear that you haven't had any seizures since 2003! That's so wonderful!
I'm definitely strongly considering the surgery - I've been on tegretol, vimpat (name brand and not), zonegran, lamictal, topomax, trileptal (name brand and not), and of course the keppra, lorazepam and diazepam (that stopped working). The only one that has been able to control any of them without too extreme of side effects is the Keppra. At this point i'm really frustrated from medication and so sick of being incoherent that I am at the point of considering the surgery. I really appreciate you sharing your experience with me. It seems most people don't regret having it even if they can't come off the medication. My biggest concern at this point is really just: if the surgery doesn't work, and the medicine i'm on is pretty much the last one i can go on - what happens then? Do you think there's a chance that the Keppra will work after the surgery? right now it takes care of most of my every day seizures but doesn't come close to helping the stress induced or fever induced ones.
I know it's hard to say, but your opinion is definitely welcome.
Thanks so much.
Dasha
Kevin -
Thanks so much for sending me a link to your experience! I read it and am so glad to hear that you haven't had any seizures since 2003! That's so wonderful!
I'm definitely strongly considering the surgery - I've been on tegretol, vimpat (name brand and not), zonegran, lamictal, topomax, trileptal (name brand and not), and of course the keppra, lorazepam and diazepam (that stopped working). The only one that has been able to control any of them without too extreme of side effects is the Keppra. At this point i'm really frustrated from medication and so sick of being incoherent that I am at the point of considering the surgery. I really appreciate you sharing your experience with me. It seems most people don't regret having it even if they can't come off the medication. My biggest concern at this point is really just: if the surgery doesn't work, and the medicine i'm on is pretty much the last one i can go on - what happens then? Do you think there's a chance that the Keppra will work after the surgery? right now it takes care of most of my every day seizures but doesn't come close to helping the stress induced or fever induced ones.
I know it's hard to say, but your opinion is definitely welcome.
Thanks so much.
Dasha
Re: Selective Amygdalohippocampectomy
Submitted by RTL on Wed, 2011-11-09 - 18:47
Dasha,
I think it's important to consider that the benchmark for a "successful" surgery is *not* necessarily to enable you to ditch all medications. Sure, it's the ultimate goal, but anything less is not necessarily a failure.
Your doctor's objective is to control your seizures. If they are uncontrolled at the moment, and surgery allows them to control your seizures with or without medications, I believe they would consider that a success.
As you know, I did not initially change meds/dosages post-operatively but eventually had to switch to a different medication because of the dramatically increased side-effects. Why did that happen? Was it because the "defective" brain tissue wasn't there any more? Who knows?!! So I still take pills, but I'm not stunned into oblivion and don't have seizures. Compared to the alternatives, I'd have to say that's a success.
And you're right - I have no way of knowing what results you might encounter with respect to medications.
Kevin
Dasha,
I think it's important to consider that the benchmark for a "successful" surgery is *not* necessarily to enable you to ditch all medications. Sure, it's the ultimate goal, but anything less is not necessarily a failure.
Your doctor's objective is to control your seizures. If they are uncontrolled at the moment, and surgery allows them to control your seizures with or without medications, I believe they would consider that a success.
As you know, I did not initially change meds/dosages post-operatively but eventually had to switch to a different medication because of the dramatically increased side-effects. Why did that happen? Was it because the "defective" brain tissue wasn't there any more? Who knows?!! So I still take pills, but I'm not stunned into oblivion and don't have seizures. Compared to the alternatives, I'd have to say that's a success.
And you're right - I have no way of knowing what results you might encounter with respect to medications.
Kevin
Re: Selective Amygdalohippocampectomy
Submitted by RTL on Tue, 2011-11-08 - 10:53
Dasha,
I'm not sure how it compares to a "selective amygdalohippocampectomy" but my operative report describes a "anteromesial temporal lobe resection" and I've detailed my experiences here:
users.eastlink.ca/~kehoe/surgery/
You'll have to copy/paste the link because the stupid spam filter on this site will not accept the full link.
Vision was mentioned as a possible issue but fortunately turned out not to be a concern.
Kevin
Dasha,
I'm not sure how it compares to a "selective amygdalohippocampectomy" but my operative report describes a "anteromesial temporal lobe resection" and I've detailed my experiences here:
users.eastlink.ca/~kehoe/surgery/
You'll have to copy/paste the link because the stupid spam filter on this site will not accept the full link.
Vision was mentioned as a possible issue but fortunately turned out not to be a concern.
Kevin