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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

To the readership,I am late

Submitted by Herb on Fri, 2006-07-14 - 13:32

To the readership, I am late to responding to this thread as I just happened upon it. While I cannot share experiences and/or knowledge from the standpoint of Epilepsy I am experienced, knowledgeable and continuing in my research as it relates to the VNS Therapy as it is utilized for TRD (Treatment Resistant Depression). I am not a patient but I am a very long-time support person and health care advocate and activist and I share our experiences with the VNS Therapy in an informed proactive website and message forum I use as a repository for my research, thoughts and opinions and the sharing both of the pro’s and con’s of this treatment option. The site name is: VNSdepression.com The link to the site is: http://www.vnsdepression.com As I read through a number of these personal experiences I find the individuals discussing the amplitude and increasing the amplitude settings and yet no one is discussing the other parameter settings such as the pulse width and/or the frequency. From our experiences many of the side-effects such as jaw and neck pains etc experienced by my spouse were overcome by adjusting and lowering the pulse width and/or frequency settings, for instance, while attempting to increase amplitude. As part of my advocacy I encourage education of the patient and/or his/her support persons to make informed and un-coerced medical decisions in collaboration with a compassionate, trusted, knowledgeable and licensed health care practitioner. While I do read here of individuals lambasting Cyberonics my position is that the relationship is between the patient and his/her physician and any additional assistance from the manufacturer is a plus. I’m curious if any of these participants when encountering side-effects from their medications contacted the pharmaceutical company and lambasted them for their product? As a knowledgeable and informed support person and having seen my wife through numerous treatment options I am well aware of the many side-effects and complications but the fact remains that the nature of her illness is life threatening and our attitude is “Nothing ventured, nothing gained” as we enter into the “Trial and Error Approach to Wellness.” My wife has experienced many serious side-effects from several AED which are crossover medications being used for TRD (Treatment Resistant Depression) and unlike some we do not alarm and bash any therapies knowing full well while our negative experiences are also to be shared others are obtaining efficacy and benefits from the very same therapies. I think it is also incumbent to separate in this instance the surgical procedure and potential side-effects from the therapy itself to be able to better understand and to make an intelligent and objective assessment. While there are reporting to the FDA and recordings of experiences in the MAUDE report one also has to carefully assess and understand what they are reading. As one particular individual I am aware of continually cites this document and has made allegations of deaths from the therapy the fact remains that no deaths have been attributed to the VNS Therapy and many of the MAUDE reports go unanswered in terms of being able to gather further and more detailed information. I also wish to point out that the prosthesis allows for the interrogation of the lead by a lead test which when properly executed by a trained physician should document a break and/or malfunctioning of the lead. What I feel is necessary are calm, education, careful assessment and collaboration with one’s physician(s) and them making informed decisions. My wife has been implanted almost 7 years with one replacement surgery for the pulse generator. Both her surgeries have been uneventful experiences with the surgical scars being minimal and of little concern to her aesthetically. She also experiences no sensations as the prosthesis cycles 24/7/365. I've also listed her settings for informational purposes only and not to suggest one follow suit. Most importantly of all after some 37 years of searching, pain and anguish my wife has been obtaining almost continuous efficacy and benefit from this therapy like no other. If one has some time try perusing the website and the various articles of information I’ve researched and collected. Maybe there’s some information one might have missed to assist in achieving one’s wellness. Warmly, Herb VNSdepression.com VNS Settings Output Current (milliamperes) 2.25 Signal Frequency (Hertz) 20 Pulse Width (microseconds) 130 Signal On Time (seconds) 60 Signal Off Time (minutes) 3 Magnet Current (milliamperes) 0 Magnet On Time (seconds) 7 Magnet Pulse Width (microseconds) 500 .

To the readership, I am late to responding to this thread as I just happened upon it. While I cannot share experiences and/or knowledge from the standpoint of Epilepsy I am experienced, knowledgeable and continuing in my research as it relates to the VNS Therapy as it is utilized for TRD (Treatment Resistant Depression). I am not a patient but I am a very long-time support person and health care advocate and activist and I share our experiences with the VNS Therapy in an informed proactive website and message forum I use as a repository for my research, thoughts and opinions and the sharing both of the pro’s and con’s of this treatment option. The site name is: VNSdepression.com The link to the site is: http://www.vnsdepression.com As I read through a number of these personal experiences I find the individuals discussing the amplitude and increasing the amplitude settings and yet no one is discussing the other parameter settings such as the pulse width and/or the frequency. From our experiences many of the side-effects such as jaw and neck pains etc experienced by my spouse were overcome by adjusting and lowering the pulse width and/or frequency settings, for instance, while attempting to increase amplitude. As part of my advocacy I encourage education of the patient and/or his/her support persons to make informed and un-coerced medical decisions in collaboration with a compassionate, trusted, knowledgeable and licensed health care practitioner. While I do read here of individuals lambasting Cyberonics my position is that the relationship is between the patient and his/her physician and any additional assistance from the manufacturer is a plus. I’m curious if any of these participants when encountering side-effects from their medications contacted the pharmaceutical company and lambasted them for their product? As a knowledgeable and informed support person and having seen my wife through numerous treatment options I am well aware of the many side-effects and complications but the fact remains that the nature of her illness is life threatening and our attitude is “Nothing ventured, nothing gained” as we enter into the “Trial and Error Approach to Wellness.” My wife has experienced many serious side-effects from several AED which are crossover medications being used for TRD (Treatment Resistant Depression) and unlike some we do not alarm and bash any therapies knowing full well while our negative experiences are also to be shared others are obtaining efficacy and benefits from the very same therapies. I think it is also incumbent to separate in this instance the surgical procedure and potential side-effects from the therapy itself to be able to better understand and to make an intelligent and objective assessment. While there are reporting to the FDA and recordings of experiences in the MAUDE report one also has to carefully assess and understand what they are reading. As one particular individual I am aware of continually cites this document and has made allegations of deaths from the therapy the fact remains that no deaths have been attributed to the VNS Therapy and many of the MAUDE reports go unanswered in terms of being able to gather further and more detailed information. I also wish to point out that the prosthesis allows for the interrogation of the lead by a lead test which when properly executed by a trained physician should document a break and/or malfunctioning of the lead. What I feel is necessary are calm, education, careful assessment and collaboration with one’s physician(s) and them making informed decisions. My wife has been implanted almost 7 years with one replacement surgery for the pulse generator. Both her surgeries have been uneventful experiences with the surgical scars being minimal and of little concern to her aesthetically. She also experiences no sensations as the prosthesis cycles 24/7/365. I've also listed her settings for informational purposes only and not to suggest one follow suit. Most importantly of all after some 37 years of searching, pain and anguish my wife has been obtaining almost continuous efficacy and benefit from this therapy like no other. If one has some time try perusing the website and the various articles of information I’ve researched and collected. Maybe there’s some information one might have missed to assist in achieving one’s wellness. Warmly, Herb VNSdepression.com VNS Settings Output Current (milliamperes) 2.25 Signal Frequency (Hertz) 20 Pulse Width (microseconds) 130 Signal On Time (seconds) 60 Signal Off Time (minutes) 3 Magnet Current (milliamperes) 0 Magnet On Time (seconds) 7 Magnet Pulse Width (microseconds) 500 .

Re: To the readership, I am late

Submitted by birdbomb on Wed, 2007-03-14 - 15:58
"Herb" does not have epilepsy, or depression. "Herb" does not have VNS in his body, therfore cannot speak FIRSTHAND of side effects of problems with side effects, surgeons, the company, etc. One thing "Herb" has failed to mention, he and his wife lied and decieved Cyberonics just to get her into the studies. "Herb" also omitted, he owns stock in Cyberonics. Conflict of interest?

Re: To the readership,I am late

Submitted by suebear on Thu, 2012-11-01 - 15:29

I do agree he should not of been permitted to be involved in the testing unless someone in his family had documentation stating he or she had the VNS in his or her body, period. 

 

 

I do agree he should not of been permitted to be involved in the testing unless someone in his family had documentation stating he or she had the VNS in his or her body, period. 

 

 

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