New - VNS, the good, the bad, and the ugly?
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I 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
Recent Comments on this Discussion
HELLO .MY NAME IS C CHILD . IAM 27 YYEARS OLD AND I HAD SREZUIER'S ALL MY LIFE .I GOT THE VNS IN ME RIGHT NOW .I HAVE LESS SERZUIER 'S NOW BECAUSE OF THE VNS .IT WORKS DON'T BE SCARED TO GET. IT'S 45 MIN SURGERY .AND YOUR THROAT WILL HURT BUT THAT'S IT MY ADVICE IS GET THE VNS AND HAVE HOPE .I KNOW WHAT YOU ARE SAYING ABOUT THE MEDS IT CAN MAKE YOU UPSET AND MAKE YOU THINK THEY DON'T WORK .I FELT LIKE STILL I GOT THE VNS . NOW IAM TAKING MEDS AND THE VNS IS WORKING GOOD EVERYTIME I FEEL A SERZUIER COME ON I GET A MAGET'AND SWAP IT OVER THE VNS AND IT STOPS THE SERZUIER ,AND NOW I SLEEP BETTER AT NIGHT ,SO GOOD LUCK
GOD BLESS GOOD LUCK ,C CHILD
my daughter tori which is only 5 years old had the vns implanton october 28th she did very well through the surgery after the surgery was over she had a hard time waking up and her blood pressure kept going up.but now she is doing fine.right now the vns is at it's lowest setting on november 11th were going to go have the voltage upped and every two weeks after that for about 6 weeks she'll have to go get it upped hopefully it works the last 6 months have been real rough her seizures have gotten really bad so hpefully it goes up hill from here.but only time will tell her vns goesoff 1 time every 5 minutes for 30 seconds anyone have anyother questions e-mail me at sbtn1260@aol.com
Tori,
My first doc recommended the VNS and I met with the surgeon. But then I thought about it and decided he just wasn't prepared or confident enough to recommend surgery to remove the focus because it was Frontal lobe and not Temporal lobe. So I went to another doc who recommended surgery and then found the best hospital my insurance would cover (Cleveland Clinic) and had the focus removed. It's almost 1 year and Im still seizure free. I was so sick of being sedated with the meds, etc. that I figured if I was going to have surgery I'd want to hope for a cure, not a 33% chance of reduction or even the chance they'd increase. I was told 33% reduction, 33% same, 33% worsening of sz's. I didn't think for one second that VNS would cure me. Every situation is different and many different factors are involved. Sorry I can't comment directly on the VNS procedure itself. Best of luck to you and your decision and outcome. It's so tiring when nothing is working!
Best Regards, Wendy
Hello Tori... My 13 year old daughter has just had VNS surgery. She is one week post op and seems to be healing well. The implant will be switched on 20th Oct. Olivia has a chromosome disorder called IDIC15 ( www.idic15.org ) Her epilepsy has steadily got worse over the years. Initially it just presented itself as absences, but now she has the whole caboodle. We have tried various meds, none of which in any combination have helped. So, here we are with the VNS. I am not trying to kid myself that it will be the miracle cure.... if it helps in any way, whether it be to stop seizures, reduce duration or help with recovery time I will be more than happy.
Pamela
Everybody has had a different experience. It sounds like you have been thru the ringer! I have had the VNS or the Vagal Nerve Stimulator for 8 years. It has helped me that my seizures are shorten. They have not gone away. I have them daily. I have had 2 brain surgeries. My focus is in my speech center. Each patient is different. Their are a lot of things out there. The new medication of the long acting Keppra is helpful. I would really think about it. At times I wish I didn't have it and other times I could say it has helped. I have had speech therapy because I have trouble w/ my speech. I have trouble turning my neck to the left and get periodic physical therapy, it is do to my sensitivity. I wear a magnet in order to sing, then I have seizures. My machine is set for every 3 minutes. I have had the battery replaced. It is at a high level. Each patient has a different effect.
1/3 has complete control, 1/3 decrease in seizures, and 1/3 no difference in seizure control