ADVERTISEMENT

VNS surgery

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

Comments

Re: VNS surgery

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

Re: VNS surgery

I have an urgent request for help. I am a VNS'er myself and have a friend who is hoping to get one. He has talked to several people who's VNS you can hear go off as well as have their voices dramatically affected when it goes off. This surgery will most likely save his life, but he won't have it if people can hear the device or his voice change every few minutes. If you don't have those side effects and would be willing to speak with him to provide some assurance to a young man who really needs help deciding, please let me know. He is willing to call you on his dime and we will both be eternally grateful. Thanks, Yvonne

Re: VNS surgery

Legislative Activism In Regards To The VNS
http://www.vnsmessageboard.com/index.php/board,79.0.html

Re: VNS surgery

Just wanted to say hello because we sound similar.  My focus is near my speech center, I have a VNS and am taking Keppra ER. All my seizures occur during sleep, so I mainly have to deal with their after-effects.  I'm doing pretty well these days, but always hoping for more improvement.  Best of luck.

Re: VNS surgery

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

Re: VNS surgery

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

Re: VNS surgery

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  

Re: VNS surgery

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 

Re: VNS surgery

Has anyone had the VNS implant for seizure and also have it affect your mood positively?Please email me at 2879@sbcglobal.net. Thanks, Sunny

Re: VNS surgery

Merlin59

HomeMy.epilepsy.com Community Community ForumSurgery Issues


ghost72

vns

i have had two brain surgerys one at 17 and one at 25,i might have the chance to have the vns surgery but i dont want to go threw the pain of surgery again,can anyone tell me about it and does it or did it hurt?

By

ghost72

at Thu, 09/17/2009 - 1:23pm | 11 views | 1 comments

Topic: Surgery Issues

Tags: i have a ? about the vns surgery?

Add New Tags:

A comma-separated list of terms describing this content. Tag your content with related terms and descriptions. By entering a few single-word tags in the space below, you are categorizing the topics you address and helping other users easily find your content. For example, if you are writing an entry about a seizure at work, appropriate tags might be seizure, work, coworkers.

Current Tags:

[ Report Abuse ]

 

Recent Comments on this Discussion

Your name:

merlin59

Subject:

Comment: *


Merlin59

img_assist = document.getElementById('img_assist-link-edit-comment');
if (img_assist) {
var img_assist_default_link = img_assist.innerHTML;
if ('yes' == 'yes') {
img_assist.innerHTML = tinyMCE.getEditorId('edit-comment') == null ? '' : img_assist_default_link;
}
else {
img_assist.innerHTML = tinyMCE.getEditorId('edit-comment') == null ? img_assist_default_link : '';
}
}
if (typeof(document.execCommand) == 'undefined') {
img_assist.innerHTML = img_assist_default_link;
document.write('

Your current web browser does not support WYSIWYG editing.

');
}
else {
document.write("

disable rich-text

");
}

disable rich-text

Input format

Rich Text Editing

  • Lines and paragraphs break automatically.

Filtered HTML

  • Lines and paragraphs break automatically.
  • Allowed HTML tags: <a> <em> <strong> <cite> <code> <ul> <ol> <li> <dl> <dt> <dd> <p> <b> <br> <br /> <span> <i> <img>
  • Web page addresses and e-mail addresses turn into links automatically.

More information about formatting options

$(document).ready(function() {
$("input#reply_main").click(function() {
$("form#comment-form").toggle();
return false;
});
});

New - Re: vns

Merlin59

My daughter had a VNS implant two and a half years ago.  It took about two months for total healing.  She has had epilepsy since birth (34 years).  She tried multiple medication cocktails, all of which would help for about six months and then the full scale of seizures would return.  She has 4 to 6 kinds of seizures, docutmented at the University of Michigan Neurology Department.  Her doctor there, recommended the VNS implant.  We talked and talked about it and sought others online who had had it done.  This had to be her decision, no matter what I thought.  I must tell you that she has been grand mall free for nearly a year now.  There have been some partial or vacant seizures, but not like she suffered them before. 

 From time to time, she has some discomfort from the implant battery pack that is in her chest and sometimes she has a little voice irritation, but the quality of her life overall has been like magic.  She is back to working her horses and making jewelry, quilts, cooking and collecting recipes for her electronic cookbook now.  I hope that someday she may even drive a vehicle.

 We go to the U of M in Ann Arbor next week for a checkup.  I will try to let you know what the doctors are saying now.  At the U of M Hospital in the Adult Neurology Ward, she would be visited by many doctors in training.  She is a special case there because of the number of different seizures that she has.  The trainees, students, and doctors would ask many questions, however she can never remember a seizure as there are no warnings before she has one.  So usually the students and doctors will ask me their questions.

 I hope this helps you.  Please feel free to contact me if I can be of more help.  My daughter may even be available to you, as she lives with me.

Sincerely,

Merlin59

Re: VNS surgery

I had VNS since 2001   It has helped me tons I no longer have grandmal sz.  Along with the vns and my meds there almost all the way undercontrol.  the VNS takes time to get use to but i think if i didnt have it i still have alot sz.

Re: VNS surgery

Merlin59

My daughter has had epilepsy since birth (34 years).  She used a host of different medication cocktails, but her system would render them useless in about six months and her grand mals and partials returned.

 She had VNS implant done two and a half years ago.  There was about a two month healing period and sometimes she has a little discomfort from the battery pack placement or a little raspiness in her voice, but what a difference the implant has made.  She has been able to return to most of her activities now and has had no grand mals in almost a year.  

Hope this helps,

Merlin59

Re: VNS surgery

Very intesting stuff sharedonline sellinghere.

Re: VNS surgery

 My Daughter had her VNS along with her meds, since she was  8 yrs old.  and now she is 18 going on 19,  It did help her a great deal with controlling her seizures,  still has seizures but the her amount of seziures are less.  The Only problem she has is that on Dec 1st of last year she had to get her battery replaced for the 3rd time since she was 8 like i said. But we had to open her up this week would have made the 3rd time.   and everytime was different.  sinse the size of the VNS is smaller then the old one was i think its the problem.  If anyone has any inputs on this would be appreciated.   

 

Thanks

Manny