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vns surgery
Tue, 03/09/2010 - 18:58We 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
Re: vns surgery
Submitted by quarky10 on Wed, 2010-09-15 - 13:11
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.
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.