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VNS surgery
Mon, 09/29/2008 - 23:47I was diagnosed with epilepsy at 13. I lost my teenage years to trips to the ER, medication, tests, and medication side effects. After 6 years of trying to find a medication that would control all of my seizures I am running short on patience. I am so tired of the way all of these medications make me feel. Anyway.... Has anyone gotten the VNS surgery? I am thinking about getting it and am going to talk to my doctor about it. If any of you have any input about the surgery please let me know.
Thank you so much!!
<3Tori
Comments
Re: VNS surgery
Submitted by yvonneloke on Mon, 2009-03-30 - 13:40
Re: VNS surgery
Submitted by desert_rose73 on Wed, 2009-04-22 - 22:05
Hi I have a VNS as well adn had it implanted on teh 20th of Sept of 07 at 11 am.
the voice alteration is a per,anet thing. You will feel the VNS going off but that will subside in the yearas to come. IT is justa normal part of having the device.
I have mine set at 2.25 amps with a magnet swipe of 2.50 amps.
It was just turned up because of being pulled off the Topamax i was on and upping my lamictal 200 mgs to be at 500 mgs. THis was done in lieu of being taken off the one drug and raising the other drug.
I have complex Partial szs with auras, and have used the magnets a ton of times. I had nasty rotten szs berforee the VNS. Iwas having anywhere from 10-12 a day or more, now I am down to 2-4 a month.
There is no one that I am aware of that has the device without any type of voice alterations. I get VERy haors when mine goes off, adn I have swallowing probkems as well, so I have to stop eating when it goes off or I will choke.
THis device saved me as well. my mom and husband both told the doc that htey were watching me die one d ay at a time and something needed to be done, so he sent me for the VNS and it has drastically reduced the szs and the post-ictal state as well. I used to sleep and sleep for about 2 days after some of my more severe Complex partials, but now I only sleep for about 30 minutes, but an awake after it is over. If I can;t swipe myself to end the sz then a family member with a magnet will swipe me for me an it will stop the sz in its tracks. I can stop auras and szs almost all the time, nad wear a magnet on my wrist.
I hope your friend gets the VNS nad has good luck with it.
I wish both of you the best with the decsion and will check back.
He can also e-mail me at cajun.wild.fire@gmail.com
Nancy
Hi I have a VNS as well adn had it implanted on teh 20th of Sept of 07 at 11 am.
the voice alteration is a per,anet thing. You will feel the VNS going off but that will subside in the yearas to come. IT is justa normal part of having the device.
I have mine set at 2.25 amps with a magnet swipe of 2.50 amps.
It was just turned up because of being pulled off the Topamax i was on and upping my lamictal 200 mgs to be at 500 mgs. THis was done in lieu of being taken off the one drug and raising the other drug.
I have complex Partial szs with auras, and have used the magnets a ton of times. I had nasty rotten szs berforee the VNS. Iwas having anywhere from 10-12 a day or more, now I am down to 2-4 a month.
There is no one that I am aware of that has the device without any type of voice alterations. I get VERy haors when mine goes off, adn I have swallowing probkems as well, so I have to stop eating when it goes off or I will choke.
THis device saved me as well. my mom and husband both told the doc that htey were watching me die one d ay at a time and something needed to be done, so he sent me for the VNS and it has drastically reduced the szs and the post-ictal state as well. I used to sleep and sleep for about 2 days after some of my more severe Complex partials, but now I only sleep for about 30 minutes, but an awake after it is over. If I can;t swipe myself to end the sz then a family member with a magnet will swipe me for me an it will stop the sz in its tracks. I can stop auras and szs almost all the time, nad wear a magnet on my wrist.
I hope your friend gets the VNS nad has good luck with it.
I wish both of you the best with the decsion and will check back.
He can also e-mail me at cajun.wild.fire@gmail.com
Nancy
Re: VNS surgery
Submitted by Lovers_end on Thu, 2008-10-02 - 12:12
i just have a question. I looked into some information about the vns treatment and there was no suggested type of patient. The website didn't say that someone like me who has absence and gramals shoulw just stick to the meds. although, i assume its for the more severe patients with sz. my mom assumes it can be for anyone with epilespy, but why would they do that right?
i just have a question. I looked into some information about the vns treatment and there was no suggested type of patient. The website didn't say that someone like me who has absence and gramals shoulw just stick to the meds. although, i assume its for the more severe patients with sz. my mom assumes it can be for anyone with epilespy, but why would they do that right?