Im a newbie here. My 12 year old son is having left temporal lobectomy done in about 3 weeks. If there is anyone who has had a child his age have this surgery done i would love to hear the feedbacks. he is wanting this done but im hoping im making the right choice for him. he has failed over 12 drugs and is on a max dose of the ones he takes now. thanks so much for those who take the time out to read this and reply.
12 year old son having left temporal lobectomy in 3 weeks need feed back please!
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epileric
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Welcome to the site.
I've never had any brain operations (I refuse to) but I'd be curious to know if you've tried anything besides medications to control your sons seizures. The one I'd like to try is biofeedback http://www.coping-with-epilepsy.com/index.php?p=eeg-neurofeedback but there are many other things like a vegas nerve stimulator http://www.coping-with-epilepsy.com/index.php?p=vns-vagus-nervethat I feel you should look into as well before doing something so permanent http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments.
Another thing to look into is diet. There is one member here who was able to stop her daughters seizures by maintaining a proper blood sugar level.
I've never had any brain operations (I refuse to) but I'd be curious to know if you've tried anything besides medications to control your sons seizures. The one I'd like to try is biofeedback http://www.coping-with-epilepsy.com/index.php?p=eeg-neurofeedback but there are many other things like a vegas nerve stimulator http://www.coping-with-epilepsy.com/index.php?p=vns-vagus-nervethat I feel you should look into as well before doing something so permanent http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments.
Another thing to look into is diet. There is one member here who was able to stop her daughters seizures by maintaining a proper blood sugar level.
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we have tried for the vns but insurance denied it so many times and then the dr's said that the epilepsy surgery would benefit him more. the diet we tried didnt work out. we have been testing for over a year for this. he has a wada test to do this friday im hoping that he will do good with that. thanks for you reply
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Hi Marnold,
I had a Left Temporal Lobectomy done nearly 20 years ago. I also had the WADA test done to locate the exact area of the seizures. Unfortunately, I was only seizure-free for 14 months after the surgery, and the seizures were worse after surgery than before. They say that left temporal lobe epilepsy is one of the hardest type to control. Also, since it was on the left side, depression set in after surgery and I have struggled with it ever since, so please address this with the doctors before the surgery!
Since the lobectomy didn't work for me, and many drugs, I had the VNS surgery. It has reduced the seizures, not completely eliminated them. But at least I can shorten them and stop them during the "aura" with the VNS.
I hope you and your son find some relief from the hellish seizures.
I had a Left Temporal Lobectomy done nearly 20 years ago. I also had the WADA test done to locate the exact area of the seizures. Unfortunately, I was only seizure-free for 14 months after the surgery, and the seizures were worse after surgery than before. They say that left temporal lobe epilepsy is one of the hardest type to control. Also, since it was on the left side, depression set in after surgery and I have struggled with it ever since, so please address this with the doctors before the surgery!
Since the lobectomy didn't work for me, and many drugs, I had the VNS surgery. It has reduced the seizures, not completely eliminated them. But at least I can shorten them and stop them during the "aura" with the VNS.
I hope you and your son find some relief from the hellish seizures.
I had it done 4 years ago and have been seizure free since then. I have weened off the meds and am now also medication free. The changes since becoming med-free.: My dyslexia has disappeared. My mood is normal. I'm not easily irritated as I had been on meds. My memory is coming back. I am thankful every day to be seizure free. It was well worth it.
I had my surgery at NYU with Dr. Doyle.
If you have any questions feel free to PM me.
Ann
I had my surgery at NYU with Dr. Doyle.
If you have any questions feel free to PM me.
Ann
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stilldancing_98
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I had a right T L. About 7 years ago.They did the grid, they did the wada over my whole brain. I also know a little boy who ( had half his brain removed) 0n emergency and he leads a wonderful life. And that is much more. The other advantage is his youth. So much healing power. I had my surgery at Harborview medical center. I also have a son who has seizures. I know it is very scary.Teresa
Although I'm not a child, I did have a left temporal lobectomy over 4 years ago. As mentioned by others, I have dealt with depression since then. However, in September of this year, it will be three years that I have been seizure free. I'm not an expert and you should definitely be sure to ask all possible questions, but I also think that being a younger child gives your son an advantage. I wish you and your family well!!