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: vns therapy side effects

Submitted by swhitman2 on Sun, 2012-10-14 - 23:12

The only problem that I have is when it is set real high, I get a tooth ache. So what i did was I went to my Dr. told him it was too high, he turned down but kept to where if I or someone swiped my magnet, I feel the tooth ache. Also when it is set high. It sounded like I had been running, and out of breath, when I talked.

Re: Re: Re: Re: vns therapy side effects

Submitted by Neesy on Fri, 2006-04-07 - 19:25

Amanda, I have also been having lots of problems. My doctor and ER doctor have said that it is because of where the VNS is placed at this point. I have been going through pain. I can't seem to catch my breath at times. It is contracting on my left hand said of my neck. My surgeon said it would need to be repositioned but has taken a different stance this last time I talked with him. He says there is nothing he can do. I can't use it right now because of all the trouble it is causing for me. My neurologist office said that were going to call Cyberonics a couple of days ago and I haven't heard anything more. This is turning out to be a nightmare. I hope that not many people have this problem. I hope you are better. Denise

Re: Re: Re: Re: Re: vns therapy side effects

Submitted by birdbomb on Mon, 2006-04-10 - 09:46

These side effects are NOT uncommon and Cyberonics IS aware of them. They do not want the public to know of them. I went thru the same thing in 03 and had mine turned off. It was not a lead impeadance. It was not a generator malfunction. I was in contact with Cyberonics and they were aware of several other people who have had the same problem. If you read the MAUDE reports from the FDA, you will see several that have been filed. Even though the unit is off, I still have terrible pain in my neck, jaw. Stinging sharp, often sudden. This is damage to the Vagus nerve and/or facial verve. A lifetime souvenier from a temporary fix. Please understand, VNS Therapy has been FDA approved for use as an adjunctive therapy in reducing the frequency of seizures in adults and adolescents over 12 years of age with partial onset seizures that are refractory to antiepileptic medications. There is no guarentee it will work, or how long it will work for. It is permanent! The generator and leads can be safely removed, but NOT the electrodes that wrap around the Vagus nerve. I know of only one doctor in Texas who even attemps to remove them and that is on pediatrics only. You CANNOT have an MRI. The FDA and Cyberonics have very specific guidelines for recieving an MRI but many places will refuse to do an MRI is there is a generator still in the body. You should NOT wear any kind of bone stimulator. You should avoid electromagnetic fields and that INCLUDES metal detectors. They can cause malfunctions of the unit. It is not recommended for those with sleep apnea or asthma, because it makes those conditions worse. If this implanted in a child younger than 12 and the child experiances adverse effects or has become damaged, Cyberonics will claim USER ERROR! Be sure, VERY sure you are willing to put your child at these risks. At the present time, I have been made aware of several children who have had their pitutary gland damaged from the VNS. This gland controls growth and these kids are living at both ends of the extreme, from zero developement to unbelievable growth. This may be a rare phenomenon, or may just be coming to light. Children do however, on a whole, respond better to the VNS than adults. Find out all the information you can and go with your intsincts. Do not allow yourself to be pressured by marketing fluff or sales reps. Read the Patient and Physician Manuals. They are downloadable and available at http://www.vnstherapy.com/epilepsy/hcp/manuals/default.aspx I also recommend http://www.vnsmessageboard.com This board is devoted only to VNS patients with over 500 members.