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Medical Forum / Diseases and Disorders / Epilepsy / January 2004New Zealand and VNS
Hi, I'm from New Zealand. Was just wondering if there's anyone else who reads this group who is from NZ and knows anything about getting the VNS implant here. (Availability, cost, etc.) I'm keen to find out other's experience with it too - good or bad. I seem to have exhausted every other avenue and I'm still having 5 to 15 complex partial seizures a day. Thanks. Darryl Howdy Darryl! Probably the best place to get information is at the VNS message board which is run by Cyberonics, the manufacturer of the VNS. They keep an eye on the board and they will e-mail an answer to any questions of that sort. http://www.vnstherapy.com/messagsfs.html  SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > Hi, > I'm from New Zealand. Was just wondering if there's anyone else who reads [quoted text clipped - 7 lines] > > Darryl Howdy! Have you tried: Epilepsy New Zealand yet? http://www.epilepsy.org.nz/frame.cfm SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > Howdy Darryl! > [quoted text clipped - 17 lines] > > > > Darryl Hi Darryl, I'm in NZ (based in Wellington). It's our teenage daughter who has epilepsy rather than me, but we've traipsed over the trails in the last 18 months or so trying to understand it all. Not totally successfully :-( I know nothing about VNS (our daughter's epilepsy is currently controlled by medication). Have you tried the NZ Epilepsy Association? They were pretty helpful when our daughter's epilepsy first presented, although I think their depth of knowledge is a little limited. Our knowledge is limited to paediatric (<sp?> i.e. child) specialists, and I don't know if they would be of any use to you. My e-mail address is genuine so if you want details of our limited knowledge please drop me a line (off-line) about the people we've dealt with. I would offer though the counsel of caution. The little I've read about VNS implants suggests it's a bit more complex than simply popping into the surgery and having a device implanted and then going away seizure-free. There seems to be quite a lot of post-operative tweaking that may be required. If local doctors are reluctant to perform the procedure it may be because they don't have the infrastructure and experience necessary to feel confident they can get it working properly. After all a butcher could probably insert the device, but getting it to work correctly may well involve quite a bit more expertise :-( Just my $0.02. Good luck, Peter Beach > Hi, > I'm from New Zealand. Was just wondering if there's anyone else who reads [quoted text clipped - 7 lines] > > Darryl Hey There, Not really sure where you can get information about the VNS in New Zealand..but i know that i've gotten tons of information about the device from the WebMD site.. Here's the link http://my.webmd.com/content/article/74/89402 I know there's this Avenue's Program that you can sign up for that's free and you can speak with live nurses, doctors, and other patients. They may be able to direct you to the correct person. That's awesome that you live in New Zealand! I've always wanted to go there..seems absolutely beautiful.. Hi, Thanks for the link. I checked it out and it all looks very good....except that as with 99% of all web sites, it's only for Americans. Us down here in New Zealand are sadly neglected and left in the dark :-( You should visit here some time. You're right, it's a very beautiful country and I wouldn't ever consider living anywhere else. Especially love the fact that the government subsidises medications to the extent that I only pay $15 a month for my epilim, tegretol and clobazam. (About $9US) Cheers Darryl. (So far no seizures at all today...YAY!!!) > Hey There, > [quoted text clipped - 8 lines] > that you live in New Zealand! I've always wanted to go there..seems > absolutely beautiful.. Sorry that the links didn't help you. I thought for sure that the WebMD one could have directed you to someone or someplace. The VNS is an amazing product, so I hope everything works out for you. And now you have me all psyched to go to New Zealand. It might have to be my next trip!! Have a good day! Well we always have a spare room and a cup of highly caffeinated coffee for a friendly visitor. Feel free any time. > Sorry that the links didn't help you. I thought for sure that the > WebMD one could have directed you to someone or someplace. The VNS is > an amazing product, so I hope everything works out for you. And now > you have me all psyched to go to New Zealand. It might have to be my > next trip!! Have a good day! Daz N Pat: That interesting that you can't acess the Web MD site and the cyberonics link. Is there a way for you to use a search engine to look up both WebMD and Cyberonics? That may be another suggestion to get you all the up to date information. Good luck! Hiya Sorry, I meant that even though I can access the sites, they are only relevant for people in USA, not here. D. > Daz N Pat: > [quoted text clipped - 4 lines] > > Good luck! Hi, We too live in New Zealand, and our child has multiple seizures daily. All meds have been very unsuccessful. Like you we have been trying to get the VNS implant available in our country. I have written to the Government and the health boards, but so far no luck. I will keep on trying though! It is unfortunate that we miss out on alot of options available elsewhere in the world, but I s'pose you can't have everything. I wouldn't live anywhere else - would you!! If I find out any more I will let you know. All the best, Kerrie. > Hi, > I'm from New Zealand. Was just wondering if there's anyone else who reads [quoted text clipped - 7 lines] > > Darryl Hi Kerrie, Thanks for the reply. That helps answer one of my questions as to whether the VNS is available here. I'm guessing you've already done all the research for your child. I'll be very keen to know how you get on with further inquiries. Do you know if it's available in Oz? What part of NZ do you live in? We're in Te Awamutu. If you're nearby, we'd be keen to meet you and share info and histories, etc. Cheers. Darryl and Patsy. > Hi, We too live in New Zealand, and our child has multiple seizures daily. > All meds have been very unsuccessful. Like you we have been trying to get [quoted text clipped - 16 lines] > > > > Darryl Howdy! I don't see my post on this thread so I'll say it again! Try Epilepsy New Zealand: http://www.epilepsy.org.nz/frame.cfm (This URL gets you past their flash page) SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > Hi Kerrie, > Thanks for the reply. [quoted text clipped - 34 lines] > > > > > > Darryl Howdy! Even better... ENZ has a forum: http://www.epilepsy.org.nz/forums.cfm?ViewForum=3 where you should be able to get any information that you want. SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > Howdy! > [quoted text clipped - 51 lines] > > > > > > > > Darryl Hey all: I did a little research and I believe they do have VNS type models in Australia/New Zealand-they are however called vagal nerve stimulators over there-I'm attaching a section from the Epilepsy Foundation of Australia that talks more about them. Good luck! http://www.epilepsy.com.au/epilepsy/epilepsyteen.nsf/Content/VagalNerveStimulation Howdy! I was looking at a NZ forum where somebody asked if anyone knew where in Aukland (or some other city) they could get their VNS programming modified. That leads me to believe that the VNS was implanted somewhere in NZ. SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > Hey all: > > I did a little research and I believe they do have VNS type models in > Australia/New Zealand-they are however called vagal nerve stimulators > over there-I'm attaching a section from the Epilepsy Foundation of > Australia that talks more about them. Good luck! http://www.epilepsy.com.au/epilepsy/epilepsyteen.nsf/Content/VagalNerveStimulation Hi Dave, I believe that question was asked by somebody who was moving to NZ and wanted to know if it could be adjusted here. Thanks though. Darryl. > Howdy! > [quoted text clipped - 15 lines] > > over there-I'm attaching a section from the Epilepsy Foundation of > > Australia that talks more about them. Good luck! http://www.epilepsy.com.au/epilepsy/epilepsyteen.nsf/Content/VagalNerveStimu lation > Hi Dave, > I believe that question was asked by somebody who was moving to NZ and [quoted text clipped - 25 lines] > http://www.epilepsy.com.au/epilepsy/epilepsyteen.nsf/Content/VagalNerveStimu > lation Hey all: I just talked to another man who lived in Italy-and was able to call the united states (cyberonics I assume) and get a list of doctors in his area that had experience with the vns and implanting it-I would say it's definitely worth a try. > > Hi Dave, > > I believe that question was asked by somebody who was moving to NZ and [quoted text clipped - 22 lines] > > > > over there-I'm attaching a section from the Epilepsy Foundation of > > > > Australia that talks more about them. Good luck! http://www.epilepsy.com.au/epilepsy/epilepsyteen.nsf/Content/VagalNerveStimu > > lation > [quoted text clipped - 4 lines] > his area that had experience with the vns and implanting it-I would > say it's definitely worth a try. Cool, Thanks, I might give that a try if I can't find out here. Darryl Hi, I have talked to my daughters specialist, and yes they have done one procedure in N.Z. Auckland I think it was. The device was supplied free of charge to the man. If we ourselves were to pay for one , the doc reckons you wouldn't get any change out of thirty grand. Yes they are doing them in Australia, but not so much on children. I dont know how youd get on over there, I would imagine you would have to pay for it yourself. My daughters epilepsy has got so bad that she is losing feeling in her body, she is now spending more and more time in a wheelchair. If we had to sell up everthing to pay for it , to give her better quality of life , we would. But at the end of the day there are no gauranties it will work, and we have other children to think of. So I will keep doing what I'm doing until someone listens. If I get anywhere I'll be sure to let you know. By the way, we live in Christchurch, nice talking to you. Good Luck, Kerrie. > Hi Kerrie, > Thanks for the reply. [quoted text clipped - 34 lines] > > > > > > Darryl Hey Kerrie, Thanks for that info. Do you know how the man managed to get his supplied for free???? That's my kind of price. The invalids benefit doesn't allow for such luxuries as medical procedures costing tens of thousands of dollars. Best of luck to you and your daughter. Darryl. > Hi, I have talked to my daughters specialist, and yes they have done one > procedure in N.Z. Auckland I think it was. The device was supplied free of [quoted text clipped - 55 lines] > > > > > > > > Darryl Hi Darryl. I will do my best to find out for you. I think it was a one off thing though, given by cyberonics. It's my kind of price too !!! As you probably know N.Z epilepsy foundation will be a useless revenue for you, as we seem to know alot more than them. Keep at your specialist about it , as he would know all about the procedure, and you never know your luck you may get a freebie!!! Good Luck, Kerrie. > Hey Kerrie, > Thanks for that info. [quoted text clipped - 67 lines] > > > > > > > > > > Darryl
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