Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
VNS turned off unknowningly
Wed, 02/27/2008 - 11:30Now before I continue I just want to state that despite all the issues I've had with my VNS I would have still had it implanted even if I knew I was going to have all of these issues. I owe my life to it and it is an amazing device. I am a very rare case of complications.
With all of that said I am only wondering how on earth my VNS got turned off without me knowing? This has a story behind it and no, it probably won't happen to you.
I'm on my third surgery to get it running pain free. The wire has uprooted itself/come forward and it's been causing a lot of pain (my doctor didn't realize that until he went in to remove the clip, what he thought was the pain causer) and because I was awake while he was finding out that it was the wire causing all of the pain he wasn't able to successfully fix the problem, although he tried. This was two weeks ago-I had the VNS implanted in September.
So two nights ago I go into a seizure fit and I ended up having somewhere around 12-24 seizures (they complex partial, it's hard to keep track.) I went to surgeon for a scheduled appointment and was told by chance to go get the intensity of my magnet turned down. I go to my neurologist and as she's doing it she notices that my VNS is turned OFF and had intervals of 60 minutes. She was pissed.
Who has access to my VNS, a palm pilot thingy (okay sue me I'm 19), and would benefit from 60 minute intervals and turning it off? Perhaps someone who is operating on me? Gah.
But then again I would have noticed if he had that stupid wand on my chest.
Maybe it was changed when he was shoving the wire around in my neck. Maybe I turned it off myself and it didn't turn itself back on? (fat chance, it was working via magnet just uh not every five minutes)
The thing that really bothers me is that I had a huge seizure fit two days ago and I can probably blame it on the fact that my VNS was turned off and I have NO idea why it was off.
It also bothers me that I have to have another surgery in two weeks to fix what was supposed to be fixed two weeks ago.
But once again I owe my life to my VNS.
I just don't owe my life to my surgeon.