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vns therapy side effects

Wed, 02/15/2006 - 10:10
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: Re: vns therapy side effects

Submitted by helenpe1 on Wed, 2006-02-15 - 21:48
re:vns therapy side effects Thanks for responding to me - I appreciate it. It sounds like you understand the tingling sensation at least, if not the bee stinging! I have had the leads checked and all is ok. I don't think Cyberonics filed a 'side-effect' report on this ( I'm not sure they really want to!) but now that you bring it up, I'm going to follow up with them and make sure that they do. Thanks for bringing that thought to my attention. By the way I love the quote at the end of your reply - it's beautiful. I will keep you posted. Thanks again, Helen

Re: Re: Re: vns therapy side effects

Submitted by trulyblessed on Sat, 2006-03-04 - 18:55
Being the odd one out but let me tell you my experience with the one and only CYBERONICS and VNS!! I DISLIKE THAT COMPANY and feel very betrayed by them. I have intractable epilepsy after undergoing the removal of a malignant brain tumor in 2003. I was told my seizures where going to get better but they got worse. I was 25yrs old married and had two beautiful children. I actually worked worked two blocks away from CYBERONICS BLVD. where the lovely "miracle devices" are being made. So,I was convinced after a year of pure hell and not being able to return to work and my life taking a complete 360 to have the VNS installed. I went to the Houston Medical Center and within a matter of 2hrs I was admitted for a night stay in the hospital. Surgery was over and done with and the next a.m. I went home. Well, what was the % for someone developing a post-op infection or there body trying to reject the device. If I recall it is like 0.4%. I was lucky enough to be one of those people!!! I had to get a picc line put in and 5 weeks of I.V. antibiotics because my body was literally trying to push the device back out. It was rejecting it. YOU SHOULD SEE MY SCAR!! IT IS GORGEOUS!!! 6 weeks later I had my device turned on. The moment it went on I noticed something was not right. I continued having it turned on for 6more months every week. I got it turned up to a pretty high and rapid cycle. I noticed it helped with my gran-mal seizures but the amount of pain it was causing me was making me a living night mare to live with. Sometimes I would tape my magnet over my device just to shut it off. After about 8 months of this I just had it turned off. Then 3 months later I decided after my many fights with my husband to call Cyberonics and ask them what they thought about why it was hurting so much. My nuerologist didn't care and I refused to go back to my surgeon who come to find out by cyberonics was no longer allowed to put the devices in anymore. They suggested I go and see another doctor. So,I did. I got to the appointment and he immediatly looks at my throat,my chest,and my armpit area and says "Your device isn't implanted right." Something Just Isn't Right There! I was rescheduled to go back under the knife exactly a week later for a revision or possibly to take it out. He said the surgery will take an 90 minutes. It took 8hrs!! 8hrs to clean up the mess the other surgeon left behind and to clean up the mess from the defective lead wire that was broken out of its protective casing wrapped around my vagus nerve. I still have my VNS in because I am meeting again with a plastic surgeon to see if any of this scar tissue can be cleaned up from the moronic surgeon who tore me apart. However,there was a defective lead wire that caused damaged too and that bee stinging that you describe. More like a million in my case. I still don't think to highly of this thing and I think I will feel better when other manufactuers start making it and CYBERONICS stops holding the Monopoly on it. However,look it up on the FDA website about the casing on the wire on their devices. It is not something they are proud to let know they have been cited for and have a problem about. Good Luck!! ~~Amanda

Re: vns therapy side effects

Submitted by arivergirlsdream on Sat, 2013-04-13 - 01:05
how long after the placement of your vns did you develop the infection?  i too had this problem.  my placement was in january & my wound was totally healed.  in april i developed a 'hole' in my incision line.  to make a long story short, after 4 surgeries (the last one being where they removed the wires from the vagus nerve), lengthy  hospital stays,too many doctor visits to count &  4 months of continuous iv antibiotics at home.  i had picc lines twice, because the first one developed an infection, then i had a central line put in for the iv antibiotics.    the lead wire actually was coming through my neck.  it is hard to find info regarding other's having this problem.  i changed neurologists & spent 5 days in the hospital to track my seizure activity, only to find none. 

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