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Medical Forum / Diseases and Disorders / Epilepsy / December 2004Vagus nerve stimulator
Hello all, Our son has Lennox Gastaut Syndrome which is a rare eiplepsy syndrome which to cut a long story short leads to badly controlled generalised seizures. His Neurologist has suggested that it might be helpful for him to get a Vagus nerve stimulator implanted. (His epilepsy has proved extremely stubborn to medication which is typical of L.G.S). For the record amongst others our little boy has had course s of Clobazam, Epilum(Sodium Valporate), Mogadon(Nitrazipam), Heminevrin and Ketamine (!!!!) So, we were wondering if anyone has any experience of the effects of the Vagus nerve stimulator (good, bad, successful or unsuccesful). We talked with one consultant about this course of action about a year ago and he seemed a bit dubious about the reported good reults in existing studies saying that he had no success with his patients. Now our neurologist suggests that another consultant is running trials. We'd just appreciate hearing any experiences that anyone has had with this treatment. Look forwards to hearing from you (replies to the group or email are welcome). Sean & Janet We have a group member, Dave, who has experience documented on his website. http://www.howdydave.com/vns.html You can find info. about the procedure at the Epilepsy Foundation's website (u.s. national site): http://www.epilepsyfoundation.org/answerplace/Medical/treatment/vns/index.cfm Take care, Julie Walton, Volunteer Webmaster Epilepsy Foundation of Idaho http://www.epilepsyidaho.org > Hello all, > [quoted text clipped - 23 lines] > > Sean & Janet Howdy! Another good information resource is: The VNS Message Board http://s4.invisionfree.com/VNS_Message_Board/index.php?act=idx  SignatureDave ???? http://www.howdydave.com > We have a group member, Dave, who has experience documented on his > website. > http://www.howdydave.com/vns.html > > You can find info. about the procedure at the Epilepsy Foundation's > website (u.s. national site): http://www.epilepsyfoundation.org/answerplace/Medical/treatment/vns/index.cfm > Take care, > Julie Walton, Volunteer Webmaster [quoted text clipped - 28 lines] > > > > Sean & Janet Cyberonics had a message board but they dropped it due to the fact that they were getting too much negative publicity about their own product on their own site. Understandable, but it left us users in a bit of a lurch! So... an independent VNS message board was set up by a VNS receipient designed for the free flow of information, both positive and negative! SignatureDave ???? http://www.howdydave.com > Howdy! > [quoted text clipped - 9 lines] > > You can find info. about the procedure at the Epilepsy Foundation's > > website (u.s. national site): http://www.epilepsyfoundation.org/answerplace/Medical/treatment/vns/index.cfm > > Take care, > > Julie Walton, Volunteer Webmaster [quoted text clipped - 28 lines] > > > > > > Sean & Janet "Dave ©¿©¬" <dave@_nospam_howdydave.com> wrote in message news:<OeS%c.5665$8f4.411@news02.roc.ny>... > Cyberonics had a message board but they dropped it due to the fact that they > were getting too much negative publicity about their own product on their [quoted text clipped - 52 lines] > > > > > > > > Sean & Janet Sean & Janet, I have seen the following neurologist for 10 years now. He recently told me in May 2004 that his results were 50% successful in his patients with VNS. But, he said it only worked 30% of the time in these 50%. He was the first to introduce the VNS to this area: http://www.mc.vanderbilt.edu/reporter/?ID=391 Eric > "Dave ????" <dave@_nospam_howdydave.com> wrote in message news:<OeS%c.5665$8f4.411@news02.roc.ny>... > > Cyberonics had a message board but they dropped it due to the fact that they > > were getting too much negative publicity about their own product on their [quoted text clipped - 17 lines] > > > > You can find info. about the procedure at the Epilepsy Foundation's > > > > website (u.s. national site): http://www.epilepsyfoundation.org/answerplace/Medical/treatment/vns/index.cfm > > > > Take care, > > > > Julie Walton, Volunteer Webmaster [quoted text clipped - 39 lines] > > Eric Howdy Eric! The VNS only fully controls seizures in a VERY small number of patients. What the doctors call "successful" and what patients call "successful" isn't necessarily the same thing. Make sure you are both agree on the meaning of "success." SignatureDave ???? http://www.howdydave.com Hello Sean, Yes, I have an implanted V.N.S. in my chest. Currently, it is inoperative as the battery is flat? A new one has been approved by the hospital I attend and should be implanted in early 2005 <hope>. So far, my doctor nor myself has been able to ascertain to what degree it is successful, but what is to lose? A lot of money, sure. I have encouraged several vfriends from this group to give the device a try. If it does NOT work, you are physically no worse off? If on the other hand it is successful you are way out in front!!! My epilepsy is - according to my doctor - one of the worst cases he has encountered; but nowhere as bad as LGS! I have taken every AED available on the planet, without success and with many side effects! The manufacturer of the device: Cyberonics has a we site I would urge you to look up: http://www.cyberonics.com though a more objective opinion can be gained from one of the Comprehensive Epilepsy Centres at major US Universities such as: Cornell neuro site in New York or Stanford Uni.? For your son's sake please look these references up or search the Internet using your favourite search engine? Incidentally, the battery in my fist VNS lasted about 7 years? The devices are also being made smaller with longer life batteries. Best of fortune, Rich. ps: I copy this to your home address lest you do not look at news every day? > Hello all, > [quoted text clipped - 23 lines] > > Sean & Janet
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