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vns therapy side effects
Wed, 02/15/2006 - 10:10Topic: Complementary Therapies
I joined this site yesterday and I'm interesting in touching base with anyone who has a vns. In particular I would like to find out if anyone has experienced any unusual side effects not mentioned by Cyberonics. I occasionally experience 'tingling' in my neck and shoulder - this is actually quite unpleasant and it has been severe enough to warrant having my vns temporarily turned off. At one point last summer it felt like I was being repeatedly stung by a bee or something like that (I'm not sure exactly how to describe it). Cyberonics claims that no one has ever mentioned anything similar to this. I have been quite happy with my vns - it has helped stop many seizures once they have started, which has meant fewer trips to the ER but if this problem became really severe again I wouldn't be able to keep my vns turned on. Please let me know if you have experienced anything like this - I would like to know - Cyberonics makes it sound like I'm crazy or something. Thanks!!!
Comments
Re: vns therapy side effects
Submitted by Jolrat on Fri, 2013-04-12 - 18:05
I am so sorry your sister went through all of this.
I wish I would have seen all of this before I had my implant back in Oct of 2010! I really don't think it is working for my seizures.
I think my Dr. at the time wanted to use me as a guinea pig. I had so many seizures and all the meds were not working. I was still working and didnt want to quit my job so I thought I would go for it after a little research.
I have pain in my left arm which I can't explain? I don't like what it does to my voice..
I live near the beach so it is really hard to avoid the sun!
My dr just added a new med last week and today a had a terrible seizure while out at the store. I have to wait until I get unsurance next year & hope I can have this removed!
Re: vns therapy side effects
Submitted by nancyjudy on Mon, 2013-04-15 - 01:30
Nancy B Jolrat, I am so sorry that you are having all of these problems with this device, but you should be real glad that you still were left with enough of your mind to realize that this thing is causing a problem for you BEFORE you became psychotic or worse. My sister would still be in a mental institution if we hadn't ordered the doctors to take it out. Sometimes I wonder if even half these doctors who are prescribing this thing even read through all te possible side effects it could cause or just skip right down to the part that tells them how much of a commission they're going to make for every implant they talk people into getting. When those doctors were convincing my sister to get this they were all over her like 'white on rice', but as soon as she had a problem they were just a bumbling bunch of excuse makers. They tried to tell us that the vns didn't cause her psychosis even though it's listed in the Physicians Manual as one of the possible side effects, then they tried to say that she was psychotic before the implant; THAT TOO is listed as a possible side effect. She was working as a Registered Nurse right up to that implant and 'all of a sudden' she becomes psychotic and they're still staying vns was not the cause? So I asked them if that was true, then why did they implant her in the first place because their little physicians manual tells them that anyone with a pre-existing psychosis isn't asuitable candidate for vns. First of all, you CAN have it removed but you need to get iot done as quickly as humanly possible before you suffer from a side effect that you won't recover from. My sister isnever going to be able to work another day in her life because of that device,but she's alive and no thanks to her doctors who refused to recognize what it was doing to her. You would think that a doctor who has had tons of schooling to study peoples brains would use theirs once in a while.
Re: vns therapy side effects
Submitted by Whateverforever on Sat, 2012-07-21 - 03:51
Ok, everyone seems to love to hate on VNS right now, saying it made them psychotic and it was the worst decision of their life. People who are reading this trying to make a decision whether or not to get the surgery, PLEASE read this. I'm like the VNS poster child. It couldn't have worked better for me. My neuro said it was a good option seeing as how I was unresponsive to any pills. I always had breakthroughs and they were getting more and more frequent. I was having a grand mal seizure every one or two months. Which isn't that bad in comparison to some people, but anyways. That's not the point. I had the surgery three years ago, expecting it to just be another thing we tried and didn't work. But let me tell you. I have not had a single seizure in three years since my implantation. I haven't even had to use the magnet at all to stop a seizure once I feel it coming. There have been no seizures AT ALL. none. The VNS in effect has cured me. I've been able to get my license and do things I never thought I'd have been able to three years ago. I can drink now, quite heavily I might add, with no seizure in the aftermath, which issomething that would have been expected in an epileptic. Please if you're reading this, take into consideration the fact that yes maybe some people have had poor experiences with it but my life would not be the same if I didn't choose to have that surgery. I wouldn't have a license, I wouldn't be going to college in the fall, I wouldn't be doing any of this. Just consider the positives