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Surgery...How do you decide?
Tue, 09/16/2008 - 09:58I know opting for surgery is a personal decision, but I just want to explore other's experiences...
My son, 12yrs, has partial seizures, some Simple, some Complex. He's on two meds, both causing cognitive side effects, which of course makes learning difficult, plus makes things difficult for him socially. We've never gotten full control of his seizures... Sometimes they come daily, sometimes every two weeks. We're at the end of the Medications options... No more to try.
Do we just live with partial seizure control, or do we continue to strive for full control with Surgery. It seems so scary to me... I just want to do whats best for my son.
If you've had the surgery, please share your experience, OR if you've considered surgery, but opted against it.
Thank you so much, Val
Comments
Re: Surgery...How do you decide?
Submitted by mamasaw on Sat, 2008-09-27 - 17:33
Re: Surgery...How do you decide?
Submitted by jenfahey on Sun, 2008-09-28 - 02:13
My 16 year old son had surgery on August 7, 2008 to remove two walnut-sized pieces of brain tissue in his right frontal lobe that had been causing his seizures since birth. He wasn't having them daily, but enough to affect his schooling and social life. He's been seizure free since surgery but we're still waiting to see what is does for his academics and socializing. So far school is ok but he's a bit more timid with peers.
It was a very difficult decision. We decided to have the whole family (6 of us!) attend several counceling sessions, during the testing process (months and months) to see if he was a candidate, so we could make this decision together.
I'm very glad we went through with the surgery. There are certainly risks, but if you trust your neurologist and surgeon, as we did, you should be in good hands.
Let me know if you have any more questions.
Jen
My 16 year old son had surgery on August 7, 2008 to remove two walnut-sized pieces of brain tissue in his right frontal lobe that had been causing his seizures since birth. He wasn't having them daily, but enough to affect his schooling and social life. He's been seizure free since surgery but we're still waiting to see what is does for his academics and socializing. So far school is ok but he's a bit more timid with peers.
It was a very difficult decision. We decided to have the whole family (6 of us!) attend several counceling sessions, during the testing process (months and months) to see if he was a candidate, so we could make this decision together.
I'm very glad we went through with the surgery. There are certainly risks, but if you trust your neurologist and surgeon, as we did, you should be in good hands.
Let me know if you have any more questions.
Jen
Re: Surgery...How do you decide?
Submitted by Cynthia10 on Sat, 2008-09-27 - 15:42
Wow, that would be such a hard decision! I would only resort to it if there were no other treatments available (including off label use such as adult med being used on kids) and if it wouldn't cause mental deficits (sorry, I really don't know how to say it, not meaning to be rude or anything. I just think it would be aweful to end up with a lower IQ because part of my brain was removed to control the seizures). And I know that always doesn't happen with surgery, but it can sometimes.
And this is just my opinion, but since he is 12 it might be good to have a little of his imput on the subject. Some 12 year olds are capable of grasping that kind of info and are able to have a say on it, while others aren't, so it would really depend on how he is. If not, is it possible to put it off (or not cause further damage if it were postponed) a few years until he could have a say in the decision? Again, like I said thats just my thoughts and opinions on it. I am against brain surgery unless the benifits greatly (and very very greatly at that) outweigh the risks. Since it is partial seizures and not the kind that can cause permanent brain damage, I would wait at least until he could decide.
Wow, that would be such a hard decision! I would only resort to it if there were no other treatments available (including off label use such as adult med being used on kids) and if it wouldn't cause mental deficits (sorry, I really don't know how to say it, not meaning to be rude or anything. I just think it would be aweful to end up with a lower IQ because part of my brain was removed to control the seizures). And I know that always doesn't happen with surgery, but it can sometimes.
And this is just my opinion, but since he is 12 it might be good to have a little of his imput on the subject. Some 12 year olds are capable of grasping that kind of info and are able to have a say on it, while others aren't, so it would really depend on how he is. If not, is it possible to put it off (or not cause further damage if it were postponed) a few years until he could have a say in the decision? Again, like I said thats just my thoughts and opinions on it. I am against brain surgery unless the benifits greatly (and very very greatly at that) outweigh the risks. Since it is partial seizures and not the kind that can cause permanent brain damage, I would wait at least until he could decide.