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Considering Surgery
Mon, 01/17/2005 - 11:30Topic: Surgery and Devices
My 15 year old son's neurologists want to send him to an epilepsy clinic (UCLA) to evaluate him as a candidate for surgery. Right now I am very against him having any surgery and so I am not in favor of this evaluation. Is there any benefit for having the evaluation for surgery even if you have no intention of ever having the operation. Here's some background. My son has been diagnosed with left temporal lobe, partial complex seizures. He's currently on Trilepal and Keppra. He's only tried two other meds. Right now he's developed a pattern to where he will go seizure free for 2 to 3 weeks. Then in about 3 days, he'll have several seizures. The worst has been 4 in one day. Then will go seizure free for a couple more weeks. He started this pattern since he's been on the Keppra last May.
Comments
RE: Considering Surgery
Submitted by Belinda on Sat, 2004-11-27 - 06:00
I can understand your not being to crazy about surgery.It's not a guarantee.I had surgery myself seizures stopped 5 months.I was 20.It was on RTL Now my seizures on my L Temporal lobe and know one will touch me with a 10 foot pole.They'll only operate on my RTL again they say they wont operate on both lobes.I wouldn't care to go through it again. Belinda
RE: Considering Surgery
Submitted by aw14187 on Sat, 2005-01-15 - 21:16
We saw the UCLA doc for the consultation last week. We were very impressed. With the testing that they can will be able to give us several treatment options, not only surgery. She mentioned that they could determine the best classification of medications that my son can try. We will be scheduling him for the testing now that I'm comfortable with the process.
RE: Considering Surgery
Submitted by 38benny on Fri, 2004-11-26 - 18:27
I was at the Medical College of Virginia Hospital doing tests for surgery <2000>. I was terrified. Especially when they told me that if they missed with the laser by even 1/2 inch I would be like a baby again and have to learn EVERYTHING all over. But then they told me that the brain surgery wasn't the only option... There was the Vagus Nerve Stimulator. It looks like a pacemaker hooked up to the vagus nerve in your chest wall runs up through your neck next to your vocal box and up to the brain. The doctor sets a time for the machine to go on/off <mine is on every 5 minutes for 30seconds>. At first you feel a little tingle in your throat and your voice may change <because its so close to the vocal box and its vibrating> - but you get so used to it that you forget about it. They also give you a magnet so if you feel the seizure coming on or if someone sees you having the seizure you/they swipe the magnet over the area of chestwall that the VNS is placed and you should come out of the seizure within seconds -
It works really well for me. Again I was terrified of the surgery but the doctors gave me a video to watch and kept explaining everything and the only problem with the actual operation I had was the anesthesia making me ill. The surgeon I had was one of the first to perform this operation in the states so I guess I was lucky.
**SIDE NOTE** EVEN THOUGH ITS NOT A TOY - MY FAMILY AND FRIENDS <AND ME SOMETIMES ->LAUGH WHENEVER I GET STUCK TO ANYTHING METAL IF MY MAGNET IS IN MY POCKET - IN RESTURANTS I'LL PICK UP SPOONS,FORKS AND WHEN I WORKED AT SEARS I USED TO GET STUCK TO THE REFRIDGERATORS AND MESS UP THE COMPUTERS... GUESS ITS A GOOD THING I WORK AT HOME - YEAH KEEP THE MAGNET AWAY FROM THE COMPUTERS!!!
JOANNE
I was at the Medical College of Virginia Hospital doing tests for surgery <2000>. I was terrified. Especially when they told me that if they missed with the laser by even 1/2 inch I would be like a baby again and have to learn EVERYTHING all over. But then they told me that the brain surgery wasn't the only option... There was the Vagus Nerve Stimulator. It looks like a pacemaker hooked up to the vagus nerve in your chest wall runs up through your neck next to your vocal box and up to the brain. The doctor sets a time for the machine to go on/off <mine is on every 5 minutes for 30seconds>. At first you feel a little tingle in your throat and your voice may change <because its so close to the vocal box and its vibrating> - but you get so used to it that you forget about it. They also give you a magnet so if you feel the seizure coming on or if someone sees you having the seizure you/they swipe the magnet over the area of chestwall that the VNS is placed and you should come out of the seizure within seconds -
It works really well for me. Again I was terrified of the surgery but the doctors gave me a video to watch and kept explaining everything and the only problem with the actual operation I had was the anesthesia making me ill. The surgeon I had was one of the first to perform this operation in the states so I guess I was lucky.
**SIDE NOTE** EVEN THOUGH ITS NOT A TOY - MY FAMILY AND FRIENDS <AND ME SOMETIMES ->LAUGH WHENEVER I GET STUCK TO ANYTHING METAL IF MY MAGNET IS IN MY POCKET - IN RESTURANTS I'LL PICK UP SPOONS,FORKS AND WHEN I WORKED AT SEARS I USED TO GET STUCK TO THE REFRIDGERATORS AND MESS UP THE COMPUTERS... GUESS ITS A GOOD THING I WORK AT HOME - YEAH KEEP THE MAGNET AWAY FROM THE COMPUTERS!!!
JOANNE