Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. The condition is named from the Greek epileps...
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RNS - RESPONSIVE NEUROSTIMULATOR
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I WANTED TO ASK IF ANYONE HERE THAT HAS EPILEPSY HAS HEARD OF OR HAD THE SURGERY CALLED A RESPONSIVE NEUROSTIMULATOR? IT IS MADE FROM (NEUROPACE). FOR ADULTS WITH INTRACTABLE (HARD TO TREAT) EPILEPSY.I AM ASKING BECAUSE I HAVE HAD THIS SURGERY AND IT IS BEING DONE AT OVER 28 DIFFERENT HOSPITALS IN THE COUNTRY THAT I KNOW OF.IT'S IN (CLINICAL TRIAL) RIGHT NOW.IT IS A SURGERY THAT HAS BEEN DONE FOR 6-7 YEARS NOW AND THE (FDA LISENCES) CAN TAKE A FEW YEARS AND SOME SURGERIES THAT ARE STILL IN THE (CLINICAL TRIAL)CAN TAKE LONGER.To GET THESE DIFFERENT SURGERIES THAT HAVE HELP ALOT OF PEOPLE IN THE WORLD, THOSE SURGERIES THEY MAY HAVE BEEN BLESSED TO HAVE THAT HAS HELPED THEM IN SOME WAY, PEOPLE THAT 1st HAVE THOSE SURGERIES,ARE PEOPLE THAT HAVE THEM WHEN THEY ARE STILL IN (CLINICAL TRAIL) THAT MAY BE BLESSED HAVING BETTER HEALTH MAKES THOSE SURGERIES POSSIBLE AND GET THE FDA LISENCES). yes, some may feel that you are being a RAT, but it IS NOT. When I first was told about it I didn't think I would ever do it. i LOOKED IT ALL UP ALOT TO LEARN MORE ABOUT IT AND WHAT MADE MY DECESSION WAS SEEING i COULDN'T HAVE ANY OTHER SURGERY i WANTED TO KNOW THAT WHEN I DIED I TRIED EVERYTHING AND i AM SO HAPPY I HAD THIS SURGERY.I have lived with epilepsy for 30yrs,having 11-13 or sometimes 11-15 a month and NEVER HAD 1 MONTH FREE WITHOUT A SEIZURE. I AM STILL IN THE CLINICAL TRAIL AND MY SURGERY 1ST ANNIVERSARY DATE WAS JUST THIS OCT.12TH. ALL THE EPILEPSY SURGERIES I WASN'T ABLE TO HAVE I asked about the VNS and the DOCTORS SAID MY SEIZURES NEEDED A QUICKER RESPONES,THAT THEY FELT THIS RNS-RESPONSIVE NEUROSTIMUALTOR COULD HELP ME BETTER BECAUSE OF THE WAY MY EPILEPSY WAS.I THANK GOD SO. This doesn't stop it for good.it will 50% or more or less everyone is different and so far I have some months 7-8,or 6-7 a month go at month 19 days in around free without one at times. I have never had that many free without a seizure before this surgery. I have always been thankful that I didn't have something worse in my life of health than what I had. Thank You for anyones reply.
Moe Posted on 10/27/07, 04:10 pm |
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I am happy to hear you are doing so well-I remember suggesting to my neurologist that I might want an MRI-before getting it I was hoping they would find some tiny tumor causing it and get it removed and just get it over with, unfortunately no such luck-and mine aren't severe enough for getting any surgery of my own choice-no doctor would approve-but I can deal-I really don't have a lot and am thankfull for it-it's great to hear that this did affect you greatly for the positive-I am sure you are able to be a bit more active now and better rest as well :) 
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Good for you!
I heard about this possibility just yerterday while at a conference here in Toronto. It's a pretty interesting development in Epilepsy treatment, and I'll be interested in seeing what other comments come up about it. Incidentally, the conference I mentionned is called the SEE program, and is presented by Dr. Robert Mittan. It was very informative in explaining the nature of seizures, the treatments available, and the strategies to use when living with it. I strongly reccomend it to anyone should it ever be available in your area. It was sponsored here by the Epilepsy Ontario association, so perhaps you can all try to get your local associations to look into getting it. All the best, Linda
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Wow, I have a buddy in California who is in this study too. The RNS is helping him too. He has had a drop in his seizures. AND Thank YOU for being a part of this study! Helping develop this for the rest of us!
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Thank You for e-mailing. I wanted to explain I appolize I made a typing error. I want to correct. This clinical trai started in 2004. I so far have been getting each month since it was turned on.(this March.)less and less seizures a month. They at first had to get to the right level of Stimulation, everyone is different.Last month I had only 5! I am staying postive.It feels beautiful not having 11-13 or 11-15 a month.This has been the least amount of seizures I have ever had in all the 30 years. I hope this will be able to help others. I still am happy I did this surgery and hope this clinical trail will become FDA Appoved.With this being able to control my epilepsy that has never been controllable, sure has made be believe that this RNS looks like it (could and can)let you be able to have more freedom or better quaility of life!I'm praying.
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They are still adjusting my friends too. But his are getting better and less severe. Having only 5.. good for you! When I have 5 thats one days worth. Mine tend to come in clusters. I have about 10-15 a month. BUT before I had the VNS it was 30-40. so I can't complain.
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Hi there,
I also have the RNS. I got it on 12-22-06. If you'd ever like to chat about it just let me know. Sincerely shawn33
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