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Surgery for a fairly well controlled condition?
Mon, 01/30/2012 - 18:36Hello Everybody!
My name is Nick, I am 26 and was diagnosed with epilepsy when I was 19 even though I have had the complex partials since I was 10... Anyways, I have controlled epilepsy when medicated. I take 600mg of lamictal xr and vimpat 100mg daily. The side effects are undesirable... it negatively effects some things like memory and focus. However, if I am not medicated, I go into a state of clustered tonic clonic seizures with complex partials as well..
I just went through a VEEG and had 9 seizures, 2 of which grand mal.. the rest complex partial... I was told it is left temporal lobe and that I look like a candidate for surgery.. so far...
So I guess I am wondering if surgery sounds appropriate considering I am controlled with medication??? I do not want to live with the side effects of the medication for the rest of my life and think surgery might be better in the long run...
I actually want to have the surgery. I like the idea of no medication and I feel very alive and excited with the thought!
Any input would be extremely appreciated.
Peace
-Nick
Comments
Re: Surgery for a fairly well controlled condition?
Submitted by princesskyles on Tue, 2012-01-31 - 23:00
When they went to plan my surgery I was told there is a 99.8% sucess rate in the surgery. Depending how well controlled they think your epilepsy is. That determines medication vs. no medication and seizure free vs. controling your seizures to something that you can live with. Something that isnt going get in the way of every aspect of your life.
I have aprox 6 seizures a day (noticeable), around 50 not noticable. I take 14 pills a day just to help control my seizures, I also have others for other reasons and two types of PRN. One is or clusters of seizures or seizures that really affect my perforance and i need something to get me back in the game quickly.
But when I first found out about surgery I did not care what it took, I wanted it so badly even it cut my seizures down mimually and I got to take less medication. I am on less then when the surgery was first proposed to me. I had doctors move, and it not work because of past complications (I had menigitis when I was 5 weeks old causing my epilepsy when I was 6 weeks, I am now 23) I let them attempt surgery 3 times to find out that there is a chance that from all the different kinds of MRIs and Neuro Psych assments that there is a 50/50 chance that I am not a canidate for the surgery and they dont want to risk anthing (they dont know if I am right bained or left brained)...but lets put it this way, after having seizures and epilepsy for the last 23 years I am willing to let them do anything to me, I was their gunia pig in all of Canada for a new tool. Then i was told that this surgery that they do for most people would stop my seizures 96.4% I was so happy I had a seizure...not kidding
I was then when I found when they didnt want to do that surgery sent to another epilepsy specialist one of the best in the world that works in the clinc who was doing an experimental surgery and I was not a cadidate for that. Now they are looking at doing Deep Brain Stimuation which is a surgery for Parkinsons but is proven to work for epilepsy. I am now waiing on that.
Good Luck
Kylie
When they went to plan my surgery I was told there is a 99.8% sucess rate in the surgery. Depending how well controlled they think your epilepsy is. That determines medication vs. no medication and seizure free vs. controling your seizures to something that you can live with. Something that isnt going get in the way of every aspect of your life.
I have aprox 6 seizures a day (noticeable), around 50 not noticable. I take 14 pills a day just to help control my seizures, I also have others for other reasons and two types of PRN. One is or clusters of seizures or seizures that really affect my perforance and i need something to get me back in the game quickly.
But when I first found out about surgery I did not care what it took, I wanted it so badly even it cut my seizures down mimually and I got to take less medication. I am on less then when the surgery was first proposed to me. I had doctors move, and it not work because of past complications (I had menigitis when I was 5 weeks old causing my epilepsy when I was 6 weeks, I am now 23) I let them attempt surgery 3 times to find out that there is a chance that from all the different kinds of MRIs and Neuro Psych assments that there is a 50/50 chance that I am not a canidate for the surgery and they dont want to risk anthing (they dont know if I am right bained or left brained)...but lets put it this way, after having seizures and epilepsy for the last 23 years I am willing to let them do anything to me, I was their gunia pig in all of Canada for a new tool. Then i was told that this surgery that they do for most people would stop my seizures 96.4% I was so happy I had a seizure...not kidding
I was then when I found when they didnt want to do that surgery sent to another epilepsy specialist one of the best in the world that works in the clinc who was doing an experimental surgery and I was not a cadidate for that. Now they are looking at doing Deep Brain Stimuation which is a surgery for Parkinsons but is proven to work for epilepsy. I am now waiing on that.
Good Luck
Kylie
Re: Surgery for a fairly well controlled condition?
Submitted by RTL on Tue, 2012-01-31 - 23:17
Nick,
I had right temporal lobe surgery in '03 and have detailed my experiences here:
http://users.eastlink.ca/~kehoe/surgery/
One of the things I focus on is the thought process leading up to the decision.
Kevin
Nick,
I had right temporal lobe surgery in '03 and have detailed my experiences here:
http://users.eastlink.ca/~kehoe/surgery/
One of the things I focus on is the thought process leading up to the decision.
Kevin
Re: Surgery for a fairly well controlled condition?
Submitted by Nerak95 on Tue, 2012-01-31 - 22:16
Nick,
There has been so much success with surgery these days. I belong to other epilepsy groups and there are many people that have remained seizure free for years. Testing will determine that you are an ideal candidate and if that's the case, I think it may be well worth the risk.
Karen
Nick,
There has been so much success with surgery these days. I belong to other epilepsy groups and there are many people that have remained seizure free for years. Testing will determine that you are an ideal candidate and if that's the case, I think it may be well worth the risk.
Karen