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#2
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| Hello, I want everyone to know I called Nanci Wilson before posting this and she mention she has received more than enough responses from people. She wondered how this came about and I let her know what I did, which was about me posting information on several other community forum. I have no idea when her story will be aired on TV, but here’s a link to the news station where she works. http://www.kxan.com Thank you everyone, Bruce
__________________ Bruce *I'm not a doctor, but the information I share is what I've learned and experienced due to having epilepsy myself. communityforum.epilepsysupportgroup.com |
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#3
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#4
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| The story was aired on TV. The video can be seen on the news station's web site: http://www.kxan.com/dpp/news/in_dept...nt-controversy There is also a print report of the story on the page for those who prefer to read.
__________________ Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. Would you like to help support this forum? We recently had a bunch of new neurofeedback practitioners agree to offer CWE members discounts for service. See post #12 for the list of all participating practitioners. |
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#5
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| Well, I did watch the video and although I do have the VNS for epilepsy and not for depression, I still stand and say it does work for me for seizures, as a last resort, I might add. That is what it was brought onto the market for in the first place. IMO, if a dr. mentions the VNS to the patient before trying any other medications or options, then it is time to seek another doctor's opinion. If the woman in this video was having problems with the stimulator moving around in her chest, why didn't she contact the surgeon's office first?
__________________ "The Golden Rule is that there are no golden rules." ~George Bernard Shaw |
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#6
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| HI cint! I have read quite a bit of your posts, and I am so glad you have had success with VNS. It isn't very often we hear success stories when VNS is used for depression, but there are more success stories for epilepsy. I am the woman who was in the story. To answer your question, I did contact the surgeons office within a month of being implanted, and was denied medical care unless I could pay out of pocket because my insurance company hadn't paid him at that time. They wanted paid for the implant costs, plus an estimated $10,000 for another surgery to fix it-there's no way I could come up with that kind of money. It took almost 1 year for my insurance to pay him, and that was just about 1 month to me finding out I wasn't a proper candidate for use of the device to begin with. When I went in to have the staples removed from implant, I didn't see the surgeon, it was his nurse who saw me and took the staples out. I told her it was moving, and she said to give it time to heal. Hope to get to know you better! Take care! B) |
| The Following User Says Thank You to Dispatch For This Useful Post: | ||
Bernard (03-03-2010) | ||
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#7
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One of the “treat seizures with medication” principles most violated by patients is the leading cause of unnecessary seizures and failure to uphold proper blood levels. This principle is patients not taking their medication they were prescribed to take. Whereas patients violate one of the principles, doctors commonly violate another principle, called monotherapy. Monotherapy is the use of one drug whenever possible. And many people with epilepsy can get the best seizure control possible on a single medication. The problem with adding more medication often results into only a fair increase of seizure control. However adding more medication can cause an increase in side effects. If one medication does not control a person’s seizure activity by itself 100%, it doesn’t automatically mean another medication won’t control the seizure activity by itself 100% either. The number of antiepileptic drugs continues to increase, but I don’t think the choices by surgery are doing the same. In my opinion, after all antiepileptic drugs available have been tried, the way they are supposed to be tried, and if seizures are still not fully controlled, then that is when treating seizures by surgery should be looked into next. But if someone ends up in a situation like mine, where surgery becomes too risky, then the person should be prescribed to take previous medication that gave the best results with the least amount of side effects.
__________________ Bruce *I'm not a doctor, but the information I share is what I've learned and experienced due to having epilepsy myself. communityforum.epilepsysupportgroup.com |
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#8
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| I just spoke over the phone with Nanci Wilson, the KXAN Investigative Reporter who did this news story, and she said she's still finding more information, and plans on doing a follow up news story about this. She said something like, "It's kind of like opening up a can of worms." If I find out more about future news stories, I'll post it on to here.
__________________ Bruce *I'm not a doctor, but the information I share is what I've learned and experienced due to having epilepsy myself. communityforum.epilepsysupportgroup.com |
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#9
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| hee-hee, I warned her. Kicked off the shoes, got a tall drink and a big bag of popcorn!
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#10
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Found this on a local news site Thought this might be interesting, especially to those with a VNS. Quote :
http://www.ctv.ca/servlet/ArticleNew...504?hub=Health
__________________ "It's no longer a question of staying healthy. It's a question of finding a sickness you like." -Jackie Mason |
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#11
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"Non-invasive"? Every time I read a description of this device and they refer to it as being "non-invasive" it makes me shudder. Apparently, my idea of "non-invasive" and the FDA's and Cyberonics' idea of "non-invasive" are two different things. When my sister had hers, it seemed to me that it was nothing BUT "invasive". You could hear it going off when she talked, you could see the scars it left on her body, and you could see it totally changed her emotionally into a person I didn't even recognize anymore. How is that considered "non-invasive"? I would really like to meet the idiot who came up with that description. Even though she has had hers removed, it still invades her every thought. Not a day goes by that she, and the rest of her family. don't think about what she has lost because of this device. "Non-invasive"? Give me a break. |
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#12
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| Quote :
Quote :
By the above definition, VNS IS invasive. They may be able to use techniques that keep scaring to the very minimum but the fact is, cutting into the body forever changes the body. VNS also causes a wide range of changes from the very best possible to your worst nightmare. Those who have achieved the best results cannot fathom the horror those who's lives have been destroyed. And those who have lived through those horrors want to warn others of the same possibilities. VNS can be a very passionate and explosive discussion topic. I have friends and acquaintances who's lives were saved because of VNS and for that I am grateful and happy for them. But I also have friends and acquaintances who have had very difficult and almost deadly results because of VNS.
__________________ |
| The Following User Says Thank You to Birdbomb For This Useful Post: | ||
NancyB (07-21-2010) | ||
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#13
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| As far as I'm concerned, anything that involves the breaking of skin, the disturbance of natural order, the electrical stimulation of organs that are vital to a humans' existance and the possibillity of stopping those organs, IS invasive. It is inhabbiting a place in the human body where something else once was, whether that be tissue or capularies or whatever. Things have to be moved and adjusted to put this device in. THAT IS INVASIVE. |
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#14
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| Nancy I am inclined to agree. ie; Radiation invades as x-rays, magnetic rays invade as MRI and countless other forms of invasion. But there has to be some line drawn. and cutting the skin is an immediate and visual invasion an oppose to long term effects of exposure to things such as radiation, electromagnetic fields.
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#15
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| Remember back in 2008 when you had a conversation with Dennis100 and the both of you were talking about how the vns device was stopping his heart? Thank goodness it didn't succeed in his case, but unfortunetly it has in others. That's a pretty long term effect if you ask me. Many of my sisters' injuries she suffered are also permanent and irreversible. Her little girl still to this day has nightmares because of what she has witnessed, and goodness only knows if she'll ever be able to forget that. |
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#16
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| By the way, Birdbomb, that popcorn is hilarious! I grew up in a house where I don't think a night went by that us kids didn't hear that popcorn machine going and we'd all come'a running to get our share. I never thought I'd ever meet anyone who liked popcorn as much as my family...untill I met Ed. I sware, he could put a bag that size under his belt every night if I let him! Last edited by Birdbomb; 07-22-2010 at 01:11 PM. Reason: spelling correction LOL "say whatever you like, just spell my name right" |
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#17
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Popcorn! Holy cow! My in-laws are popcorn connoisseurs! And they made the best you ever ate. Someone in my house makes a batch or 2, every evening. Now my 6 and 10 yr olds can even make their own microwave bag. Dennis has done a tremendous amount of research into VNS and cardiac problems. He also scourers the FDA MAUDE data base reading 1000's and 1000's of reports of adverse effects and deaths of VNS for very specific reports and has found many interesting facts and patterns. Things Cyberonic$ neglects to tell their customers and things that the FDA doesn't give a rat's ass about. Dennis has taken the time to post many of his findings on my site. I have to give that man a lot of credit. It's HARD to sit and read those reports without becoming angry, frustrated and just plain sick. Non-invasive? VNS Therapy? If anyone is told that, then they need to read just one year's worth of MAUDE reports. The absolute hell some of these people, like your sister experience is unreal. Yet it happens again and again. Who knew that such a "minor surgery" could end up so horribly wrong........um.....er.....the FDA and Cyberonic$ [/rant]
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#18
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| Oh yeah, buy the weigh, thanx four coreckting mi spelling! |
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#19
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#20
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Associated Press article I'm a little confused. I just read an article in the Associated Press dated October 21, 2008 about Transcranial magnetic stimulation [TMS] and it was saying how the government has just approved the first non-invasive brain stimulator to treat depression:TMS; the first magnetic pulse device to treat depression. This is where I get confused. The VNS is a brain stimulator which uses magnets and has a pulse generator and it was approved to treat depression in 2005. Maybe I just bought a bad calendar, but isn't 2005 before 2008? Oh yeah. I forgot the most important part. According to Cyberonics, it TOO is non'invasive. |
| Tags |
| corruption, cyberonics, depression, falsified, tainted studies, vns |
| Thread Tools | |
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