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VNS(Experiences)
Sat, 06/11/2005 - 16:54Comments
Re: RE: VNS(Experiences)
Submitted by tonialpha on Mon, 2008-05-26 - 21:45
I sing in choir and I love to perform too. My seizures make me walk in circles and my seizure focus also is in my speech area. My neurologist said "let's put a VNS" I thought that should be nice. I tried to sing and I did ok. Then my seizures increased he increased my machine and my throat periodically got soar and I would lose my voice and I couldn't sing. I got upset and I confronted my neurologist and he said " tape your magnet over the VNS on your chest!" I do that, and I smile and sing to my hearts content! I untape it when I am finished and go do my usual things for the day. It is possible. The machine stops when you put the magnet on for a long period of time and will delay the timer until it is un taped and then it will go back on when the magnet is off. My timer goes on and off every 3 minutes. I hug people sometimes during a simple seizures or walk or babble. If it's a bad one I would not sing anyway. I have had a VNS for 8 years. It has been semi-helpful. I can at least not be hospitalized as much. It has cut down on doctor's visits and hospitalizations. I would like to drive someday and work again. I will have to give it credit. I have had 2 brain surgeries. A VNS surgery and battery replacement.
I sing in choir and I love to perform too. My seizures make me walk in circles and my seizure focus also is in my speech area. My neurologist said "let's put a VNS" I thought that should be nice. I tried to sing and I did ok. Then my seizures increased he increased my machine and my throat periodically got soar and I would lose my voice and I couldn't sing. I got upset and I confronted my neurologist and he said " tape your magnet over the VNS on your chest!" I do that, and I smile and sing to my hearts content! I untape it when I am finished and go do my usual things for the day. It is possible. The machine stops when you put the magnet on for a long period of time and will delay the timer until it is un taped and then it will go back on when the magnet is off. My timer goes on and off every 3 minutes. I hug people sometimes during a simple seizures or walk or babble. If it's a bad one I would not sing anyway. I have had a VNS for 8 years. It has been semi-helpful. I can at least not be hospitalized as much. It has cut down on doctor's visits and hospitalizations. I would like to drive someday and work again. I will have to give it credit. I have had 2 brain surgeries. A VNS surgery and battery replacement.
RE: VNS(Experiences)
Submitted by mexican_fire on Sat, 2005-06-11 - 14:10
I have one, but my sotry is a bit different on how I got it.
after I had a 3 week long illness with Meningitis and encephalitis back in 1997, they put one in to act as prophylactic treatment against any post-meningeal seizures, which are a common occurance.
They put one in,. turned it on and left it run for about 6 months. Then it got turned off, and when I got here years later, the first neuro turned it back on after having another batery installed, rather then removing it.
It never gave me much trouble in the way of pain, but then of course i have nerve damage on my left facial and trigmeninal nerves from other surgeries unrelated to E. So I didn't really have a sence of feel there.
IT is still in me and ticking away. sometimes it proves to be really effectig, other times, it is like what is the bother of hainv this thing.
But, I would recommend to anyone whose doctor is suggesting they need it, to at lteast give it a try, thre worst that is going to happen is that it will not be effective. They take it out,and you are done.
Nancy
I have one, but my sotry is a bit different on how I got it.
after I had a 3 week long illness with Meningitis and encephalitis back in 1997, they put one in to act as prophylactic treatment against any post-meningeal seizures, which are a common occurance.
They put one in,. turned it on and left it run for about 6 months. Then it got turned off, and when I got here years later, the first neuro turned it back on after having another batery installed, rather then removing it.
It never gave me much trouble in the way of pain, but then of course i have nerve damage on my left facial and trigmeninal nerves from other surgeries unrelated to E. So I didn't really have a sence of feel there.
IT is still in me and ticking away. sometimes it proves to be really effectig, other times, it is like what is the bother of hainv this thing.
But, I would recommend to anyone whose doctor is suggesting they need it, to at lteast give it a try, thre worst that is going to happen is that it will not be effective. They take it out,and you are done.
Nancy
Re: RE: VNS(Experiences)
Submitted by suebear on Mon, 2008-05-26 - 18:40
Karl,
Obviously my email post is a bit late as I see your surgery was to take place on May 22 and it is now May 26. My point is this, if the surgery has been recommended to you by 6 different doctors would not it be something to consider to have a normal chance at life?
I do hope that you made the right decision for yourself as well as your family. Something you must remember, everyone has different experiences with VNS so what one person has may not always happen to another and many fail to realize that which makes them run the other direction when this opportunity comes into question.
Another issue that many are faced with is believing what they read online rather than what they hear from their doctor. Considering the fact, your doctor is the person who works with you directly whereas the persons on the Internet are only there for providing education and information, NOT medical advise.
I wish you well in your recovery.
Sue
Karl,
Obviously my email post is a bit late as I see your surgery was to take place on May 22 and it is now May 26. My point is this, if the surgery has been recommended to you by 6 different doctors would not it be something to consider to have a normal chance at life?
I do hope that you made the right decision for yourself as well as your family. Something you must remember, everyone has different experiences with VNS so what one person has may not always happen to another and many fail to realize that which makes them run the other direction when this opportunity comes into question.
Another issue that many are faced with is believing what they read online rather than what they hear from their doctor. Considering the fact, your doctor is the person who works with you directly whereas the persons on the Internet are only there for providing education and information, NOT medical advise.
I wish you well in your recovery.
Sue