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Medical Forum / Diseases and Disorders / Epilepsy / May 2004Cyberonics has discontinued their VNS message board!
Howdy! I went to the Cyberonics VNS message board and found this: =================== Cyberonics has permanently discontinued the VNS Therapy Message Board. The Company offered the Message Board as a medium for discussions among patients and potential patients regarding their experiences with epilepsy and VNS Therapy. Increasingly, however, the Message Board has been an instrument for abuse by certain individuals. Cyberonics deeply regrets the inconvenience to patients and potential patients. =================== They didn't like all of the negative reports that were being posted about the device. -- Bad for business don'cha know! A NEW VNS MESSAGE BOARD is available at the following URL: http://s4.invisionfree.com/VNS_Message_Board  SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > Howdy! > [quoted text clipped - 23 lines] > > http://www.howdydave.com G. -- Holy Vachon Batman !! :-< I guess they thought by closing it, that the negative referrals or comments would stop? Edsel did that once ... (before your time... ) . What does that do for people like You and Ann (?) wrt. Medical or Legal problems if you need any Maintenance etc. you listed? Are they still going to Operate (:-< ) but just with the Disabled Customer Dialogue Website? Does your Doctor handle all that now anyway? (maintenance) or do the Doctors expect HQ to be running if they need 'parts' or whatever they need as part of the Ongoing Care? I wonder how long it'll be before someone sets up a Parallel Group (Web Address) in response to them withdrawing the Main (old) Group... If they thought there were too many 'spleens being vented' on the main group, I wonder if some were trolls? I can only imagine what V2N2 group would read like!!! I hope you can find some alternate meeting ground for 'you all'. There must be 30,000? or ?? of you worldwide-> at least that sort of Magnitude was suggested in 1999 at Toronto Ep. Convention. (Granted, that was by an Employee of the Company, and Only from **my memory, but I assume they had figures that were accurate then.) Well GOrdon in my cae, my device is now off. And hopefully I won't need replacements or anything, jsut have to bide my time till Summer and if all goes well to have it removed. Now what to do with all the freaking magnets I have, don't want them anymore! LOL Have agood one! Ann Ann........ my son is 9 and is having good results with his VNS. Our only problem is he keeps loosing his magnets. So if you still have your magnets we'll be happy to take them off your hands! Howdy! Go on down to the hardware store and get some "cow magnets" for yourself (see picture on my VNS site.) They cost about $4 or so, work very well and are easy to palm. SignatureDave ???? > Ann........ my son is 9 and is having good results with his VNS. Our only > problem is he keeps loosing his magnets. So if you still have your > magnets we'll be happy to take them off your hands! Granted the bad publicity will still be around... It just won't be on their site! After all... the primary objective of ANY company is to make money! It's just bad marketing to have this on the manufacturer's site. I'm not at all surprised and I think that we're better off having objective conversation someplace where there isn't a conflict of interest. SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > G. -- > Holy Vachon Batman !! :-< I guess they thought by closing it, that the [quoted text clipped - 20 lines] > Employee of the Company, and Only from **my memory, but I assume they had > figures that were accurate then.) This doesn't sound too good. I'm in the process of trying to organise getting one implanted....need to go to Australia to get it done as it isn't done here in New Zealand. I'm wondering if it's worth the expense to have it done on a gamble that it'll work? Darryl. -- To reply, change daryl to darryl in address. "It's all fun and games till someone loses an eye" Quote: My Mum > Granted the bad publicity will still be around... > [quoted text clipped - 39 lines] > > Employee of the Company, and Only from **my memory, but I assume they had > > figures that were accurate then.) Howdy! Why sure it is! When somebody is perfectly satisfied with something they have no need to go to a message board to talk about it! That means that most of the people going to the VNS message boards were people who were having problems with their VNS. We don't have a clue as to what percentage of patients with the VNS that is. I don't think that there were more than 250 people who ever posted to that group (compared to how many VNS implants in the last 10 years or so?) All I'm saying is that it's BAD BUSINESS to put bad publicity on the same site that you are using to sell a product! "Bad business" is not the same thing as "bad product!" SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > This doesn't sound too good. > I'm in the process of trying to organise getting one implanted....need to go [quoted text clipped - 58 lines] > had > > > figures that were accurate then.) True, good point. -- To reply, change daryl to darryl in address. "It's all fun and games till someone loses an eye" Quote: My Mum > Howdy! > [quoted text clipped - 90 lines] > > had > > > > figures that were accurate then.) |
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