Community Forum

vns surgery

We are considering the vns for my daughter who is 36.  She has had seizures since she was 1.  Any ideas on ways to pay for the vns surgery if medicaid denies it.  This is our last hope.  Side effects of meds are almost unbearable.  Thanks,   Brenda


OMG! I am 29 (almost 30) going through the same thing as your daughter! I'm debating the same surgery. I'm so glad to know someone out there is somewhat like me. As for Medicaid, I'm having a hard time with them, they keep denying me coverage saying 'Epilepsy is not considered a disease' or something to that effect. I've tried 3 times to get them to help with me, they just help my kids. What are your thoughts about VNS? I just learned about it tonight, trying to find out as much pros & cons as I can, wanting to hear people responses though, not just what reports & doctors say. I was diagnosed at 2. Just found out today they are becoming worse, but the side effects are; like you say, unbearable. It's like deciding between being less functional in life and having less seizures; or becoming functional & having seizures...either way is bad. I don't know whether to be angry, cry, or something else. I work in an OB Gyn office, I don't like my patients to see how the medications are effecting me, but I love my work. What do you do...

Keep me posted on what u decide & I'm actually in the process of trying again for medicaid (4th time, cross fingers), I'll see what I can find out. I'm in Texas though, I don't know where your at or if the same "requirements" apply.

 I'm sorry about your seizures and really sorry you're on your 4th try.  We are on our second.  We live in Idaho.    Medicaid says my daughter doesn't meet the criteria for the vns.  But there is no criteria!  We've been in contact with the company that makes the vns-Cyberonics in Houston.  Have you ever talked with someone like that?  A girl on my Special Olympics team has a vns and it has helped her alot! I guess we just have to keep praying for medicaid to to have a heart(?) and help us.  I'll keep you posted and you keep me posted.  Good Luck 

Hi all,

Do you know where I could get a VNS device? How much is it? My brother got epilepsy since 4 years old, now he is 39 years old, but he is in a status and with no control with medications.

Could you help me please?




Before you decide on surgery I'd suggest you read the Sept issue of Reader's Digest which goes on the stands next tuesday. There's an article in it that deals with dangerous medical devices and the VNS is the main topic of the story.

Thank you for the article.  I have had the VNS for 10 years.  I have had 2 brain surgeries.  I wanted the best to be undercontrol. When I was young my parents just had treated me as a regular child and I went to camp and school.  I did have seizures but because I was always busy my seizures could of been worse. 

My VNS has been good at times and helped.  It took time to get used too.  When I needed to replace the battery, it has not benefited me well. 

I have had trouble w/ swallowing and ear aches which I felt applied w/ the apparatus. I have had trouble raising my left arm. Physical therapy helped...they felt it could of been seizure activity.  I keep it at a low stimulus and that is the best for me w/ the new battery.  I have trouble speaking and swallowing w/ the higher frequency and my system is more sensitive.  The company stated to use the latest battery system which is very small and best for the human anatomy.

It is a toss up!

It lessens the duration of seizures.  The seizure activity is not as dramatic.  It has helped.  I found the right doctor really helps!

My brother has had seizures since he was 4 years old. He is 39 years old. I think the VNS could be an option, but I don´t know how much it is.

   I had the vns surgery back in 2006.  It helped my seizures at first and it helped with my depression.  About 6 month later I has severe pain in my neck.  I told my doctor about it and he said it was because of the new setting that they set the device to and it would go away.  The pain did not go away it got worse, plus I developed a couch, lost my voice, and had a lump the size of a golf ball.  The dotor took a CAT scan of my neck and found out that I had devleoped an infection.  I was on antibiotics for 4 months and my voice finally came back but the lump on my neck never went down. 

   It was the week before my wedding and I still had a huge lump on my neck so the doctor tried to remove some of the fluid by way of a needle so that the lump would not go so big on my big day.  Wen he tried they realized that the infection and not gone away it had gotten worse.  My doctor had to call Cyberonics and see what might be causing it.  They told him to run another diagnositic test on the device to verify it was working properly.  When my doc ran the test it showed that one of the leads was not working properly at all.  I went and got a x-ray and found out that one of the leads that was suppose to be attached to my vagus nerve was broken and instead of shocking the vagus never it had been shocking the tissue in my neck.

   Long story short, I had to get it removed a year later because when they went in to repace the leads the infection had gotten so bad that they could not tell the difference between my vagus nerve and the infection.  It did perment damage to my vagus nerve which controls your vocal cords.  I use to get auras before my seizures now I don't.  I no longer can drive and I have tried every medicine known to man.  I even tried to see if I could have brain surgery and they said it was to risky.

   For me, the VNS impant was the worst choice I ever made.  However, I am a unique case.  If you choice to get one, insist on diagnoistic tests all the time.  My doctor only did them like every other month.  And if you think that there is something wrong, please make your doctor listens to you. 


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