Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 Hi All, I just wanted to share a success story! After careful consideration, we signed Ben up for the vagus nerve stimulator implant surgery. We were at our wits end - numerous drugs had not only exposed him to a number of unfortunate and uncomfortable side effects, they had not helped his seizures at all. Dr. Kurtis Auguste at UCSF performed the surgery on Ben two weeks ago. The entire procedure, from check-in to leaving the hospital, took 7.5 hours. And Ben has been seizure-free for two weeks! Amazing, unreal and, of course, anxiety-provoking. I can only hope and pray and knock on wood that this effect will continue. If anyone else is considering this surgery and has questions, please don't hesitate to email. I'm happy to share all of the details. I can't recommend Dr. Auguste highly enough. He was amazing - he was very, very good. And has a great bedside manner, something I was not expecting at all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 Dear Cathrine, so glad to hear this great news and we should all knock on wood for Hearing that Ben is fine now, my question is this: did Ben has the portion that causes the problem( seizures) removed? And if yes where was this portion? Best Regards, Lina On Sep 2, 2011, at 9:27 PM, " catherine.jacobson " wrote: > Hi All, > > I just wanted to share a success story! After careful consideration, we signed Ben up for the vagus nerve stimulator implant surgery. We were at our wits end - numerous drugs had not only exposed him to a number of unfortunate and uncomfortable side effects, they had not helped his seizures at all. > > Dr. Kurtis Auguste at UCSF performed the surgery on Ben two weeks ago. The entire procedure, from check-in to leaving the hospital, took 7.5 hours. And Ben has been seizure-free for two weeks! Amazing, unreal and, of course, anxiety-provoking. I can only hope and pray and knock on wood that this effect will continue. > > If anyone else is considering this surgery and has questions, please don't hesitate to email. I'm happy to share all of the details. I can't recommend Dr. Auguste highly enough. He was amazing - he was very, very good. And has a great bedside manner, something I was not expecting at all. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 That's fantastic news . Really pleased for you and Ben. All the best Katy L-)x > > > Hi All, > > > > I just wanted to share a success story! After careful consideration, we signed Ben up for the vagus nerve stimulator implant surgery. We were at our wits end - numerous drugs had not only exposed him to a number of unfortunate and uncomfortable side effects, they had not helped his seizures at all. > > > > Dr. Kurtis Auguste at UCSF performed the surgery on Ben two weeks ago. The entire procedure, from check-in to leaving the hospital, took 7.5 hours. And Ben has been seizure-free for two weeks! Amazing, unreal and, of course, anxiety-provoking. I can only hope and pray and knock on wood that this effect will continue. > > > > If anyone else is considering this surgery and has questions, please don't hesitate to email. I'm happy to share all of the details. I can't recommend Dr. Auguste highly enough. He was amazing - he was very, very good. And has a great bedside manner, something I was not expecting at all. > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2011 Report Share Posted September 3, 2011 Dear Lina, The VNS surgery does not remove any part of the brain. They put a generator (basically a pacemaker) under the skin by the left clavicle on his chest. Then they guide electrodes up under the skin to the vagus nerve which they access right under the left chin, on the neck. Stimulating the vagus nerve stimulates the brain. The idea is that regular stimulation of the brain (via the vagus nerve) at a low amplitude will interfere with seizure activity, but NOT with regular brain function. Incidentally, this procedure is also used in adults with depression. Ben was not a candidate for the kind of surgery that removes part of the brain. His seizures originated from many parts of both the right and left sides of his brain. It is a difficult decision to make - operating on your child as opposed to trying medications. However, the success rates are quite high in children (much higher than in adults) and the risks fairly low, IF you have a good surgeon. Our neurologist told us - after we had tried the 4th or 5th drug - that the chances of a drug helping Ben were less than 10%. The chances of the VNS reducing seizure frequency by 50-70% were about 85%. The chances of the VNS completely eliminating seizures was about 5% and the chances of it not helping at all were 10%. So the odds were in our favor. Even so, we were not expecting to be in the 5%! We would have been happy with any reduction, as well as being able to reduce the amount of medication he was on. That being said, it is much more difficult to decide to operate on your child, than to give him another medication. I don't know why - it seems irrational because we put Ben through much worse on medications than we did with the surgery. But again we were very lucky to have a good surgeon. He trained with the best and has implanted hundreds of these devices in both adults and children. Ben was the second youngest he had operated on. Please feel free to email with any other questions. I can't tell you how much this has changed Ben's life for the better. But of course every child is different. I think it's an option to consider, along with all the other complicated factors that we have to consider... It was presented to us as a last resort, although in hindsight, I wish it had been presented as an option a little earlier. > > > Hi All, > > > > I just wanted to share a success story! After careful consideration, we signed Ben up for the vagus nerve stimulator implant surgery. We were at our wits end - numerous drugs had not only exposed him to a number of unfortunate and uncomfortable side effects, they had not helped his seizures at all. > > > > Dr. Kurtis Auguste at UCSF performed the surgery on Ben two weeks ago. The entire procedure, from check-in to leaving the hospital, took 7.5 hours. And Ben has been seizure-free for two weeks! Amazing, unreal and, of course, anxiety-provoking. I can only hope and pray and knock on wood that this effect will continue. > > > > If anyone else is considering this surgery and has questions, please don't hesitate to email. I'm happy to share all of the details. I can't recommend Dr. Auguste highly enough. He was amazing - he was very, very good. And has a great bedside manner, something I was not expecting at all. > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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