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 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 nancyjudy on Fri, 2011-10-28 - 12:21
Nancy B Tadybug, I am going to repeat something that I have said in a previous reply, but I think it needs repeating. Type 'Maude Data Base' into your google search bar, and when it comes up type 'death caused by Cyberonics vns device'. When that page comes up, go to the very bottom where it says 'repeat search with ommitted items included' and read some of those reports. You can also type into that very same searc bar 'serious, or lifethreatening injuries caused by Cyberonics vns device' and read those reports, again, 'with the ommitted items included'. You can also type in 'warning letters sent to Cyberonics re: vns device' and read those. My sister almost died from this device, and she will be disabled now for the rest of it BECAUSE OF THIS DEVICE. This is a very dangerous device, and yes, there will be people who sware it has helped them, but there are many others who it has either killed or mamed, You need to know ALL the facts in order to decide if that is a risk you are willing to take. Good luck in your decision.
Mariah
Submitted by Justin S. on Tue, 2017-09-26 - 13:33
Just like your daughter my son had these same side effects. I made them turn the VNS therapy off. I am so sorry for your loss. Years later we have the upgraded version and were promised that it would work well. It hasn't. We are in the process of having it turned off again.
Re: vns therapy side effects
Submitted by theathorne on Mon, 2009-11-16 - 03:18
Hi, I just now joined this site and you may have already made a decision by now BUT it is a decision that only you can make. As a RN I have taken care of a little girl that it worked well for and she had no side effects. As a mom, my son almost died from the VNS. So, no one can make that decision for you and I know it is a hard one. We make hard decisions every day for our children and in the end you have to realize that you tried to do the best you could. Good luck and best wishes. Thea Thorne-mother of Michael:)