vns therapy side effects

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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: Re: Re: vns therapy side effects

Submitted by Lindsay Duso on Thu, 2006-02-16 - 18:03

Helen, I am doing well so far with vns. I do not like the vocal change, that is my main reason. I am a stage actor, so I can hide the change slightly while on stage, but I am not a fan of it. I am still seeing my neuro once a month, and I have two more time when my "voltage" is turned up as I call it. I don't know quite yet if it is working. The seizures have stopped for now but I still have auras. Lindsay

Re: VNS Side Effects

Submitted by Echo04 on Sat, 2008-01-05 - 22:00

I got into a study and got the VNS this time last year with no problems. 2weeks later it was turned on and had my first adjustment. Everything was great until I went in for next adjustment and the technician or the adjustment device screwed up and I was hit with the max voltage several times within a 15 minute period. Everytime she reset it it hit me again. Finally she called cyberonics tech dept and was told how to do it. That was Feb 21st and I have been sick as a dog ever since. I spent most of this year homebound. Headaches EVERY day since, neck pain, body pain, several mentioned toothaches. I had those alright bad ones but Shortly after my teeth litterally turned black on the edges and became brittle as chalk. I just spend 5000 last year on my teeth and they were in great shape when the implant was installed. Once they turned black it was like wildfire through my mouth. All my teeth were like less than 4 months later. I think it a bit unusual for every tooth you have to all go bad all at the exact same time and exact same way in a 4 month period. Has anyone experienced the max voltage shock ? If so what were your experiences. Has anyone had anymore teeth problems except pain ? I am having an eeg and a pet scan this week and a four hour cognitive test. The interesting thing is within 2 weeks of the shock they pulled me out of the study once they found out I called Cyberonics ( never returned call or e-mail) and then the FDA to file a complaint. In the prestudy paperwork they do mention all these side effects you guys and myself are expering. The side effect list was staggering. I hate to take extreme issue with Herbs statement that no one has died from it. Also in that paper work was adverse advents and since the beginning of testing there has been over 30 deaths. He is right in saying cyberonics said the vns had nothing to do with them. Some were suicides, I can attest it can make you very suicidal, unknown causes, siesures, and heart attack and of course the group " death by unknown causes". Don't tell me the VNS has never contributed to deaths. I have faith in this device. I don't know why but I do. The problem is if the thing malfunctions there is really very few dr's who have seen the symptoms or know what to do about it. The dr's need much more training in all aspects of VNS so they can properly handle all problems that arise. I would recomend anyone interested in this thing, especially for depression, wait 2 - 5 more years. Your chances of getting the results will be much more in your favor. I thought I had nothing to lose but instead I lost a whole year in severe physical and mental pain not to mention 5200 in dental work and another 500 co-pay for surgery. Keep in mind if you get on a study they don't tell you that you have no access to an MD. Your dr is blind to the study and will not break the protocol. They never checked me out to see if I could drive or walk or hurt in any way. I could barely do either. Also you sign all your rights away. Sorry for being so long winded ! Peace to All ! Echo04

VNS nearly killed me

Submitted by dennis100 on Mon, 2008-01-07 - 11:23

I had the surgery on 7/21/00. The device never helped my condition but I did not regret my decision to try it, that is until 7/02/06 when the device malfunctioned and nearly killed me. On that date I started to experience what I thought was a new type of seizure. The episodes began with a sudden sharp pain to the throat followed by choking and then unconsciousness. I was not alarmed by this because I have several different types of seizures. My parents happened to stop by that sunday morning for a visit. They realized that something was wrong and called my neuro and ems. My last memory of that morning was being inside of an ambulance. When I regained consciousness I was in the ICU. What was actually happening is the device was stopping my heart (asystole) during the 30 second on cycles. Once my neuro realized that the problem was cardiac in nature and not seizure activity he had to rush to his office to retrieve the equipment to deactivate the device. Once the VNS was turned off I regained a normal heart beat. My VNS was programmed at 30 sec/3 min and I had approx 40 episodes of asystole. It was a miracle that I survived that ordeal.