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 drama

Sat, 04/18/2015 - 21:08

just wondering if anyone else has had drama with a vns implant? I was all for this thing and it did help. Except it had to be turned down because it caused gastroparesis, pain every time it turned on, shortness of breath, sometimes my throat tightens up, etc.  the last 6 wks the muscles around my leads have been spasming throughout the day everyday all day and night, and it causes discomfort as well.  This is getting turned off in a few days.  I'm kind of bummed because on one hand, it worked, but i can't handle the adverse events.  And i don't qualify for any other surgery i guess....

Comments

Reader's Digest article:

Submitted by dmf1958 on Mon, 2017-04-03 - 09:14
Reader's Digest article: Medical Devices That Can Kill is a must read for anyone either with the device or thinking about surgery. Yes, that's me in the articlecenter4research.org/nrc-in-the-news/news-analysis.../medical-devices-that-can-kill/

Hello, I’ve had the VNS for

Submitted by gfried27 on Sun, 2019-04-28 - 13:26
Hello, I’ve had the VNS for about 5 years and have not had a seizure in that time, which is amazing! I was just recently diagnosed with gastroparesis though and with the vagus nerve playing an integral role in the stomach emptying, it’s hard to think it’s not related to the VNS.The success of the VNS has been life changing. To the other person’s question though, not everyone will see the same results and I am still taking 3 meds. I also have a rare side effect that causes my left glottis to be parylized every time it pulses, which affects my breathing and speaking but is tolerable. The gastroparesis on top of that though may force me to make a difficult decision. Like you, my seizures start all over and so I didn’t qualify for the brain surgery and probably not the RNS. DBS (deep brain stimulation) is now approved for epilepsy so that might be a consideration down the road. Do you still have the VNS? Does your gp totally go away when the VNS is low or off? Thanks and I wish you all well!

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.