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What do you think about Vagus Nerve Stimulators??

Sat, 07/28/2007 - 00:45
We have had a very bad week. My daughter is not doing well and had an 18 hour visual seizure (please read my other posts) which is totally new for us. We saw an ophtamoligist and everything was normal. He is suspecting more seizure activity. Ugh!! My daughter does not handle most of the meds we've tried and is on Topomax and Celontin. She has been struggling with one form of epilepsy or another since she was 11 y.o. My daughter does sing and do music in our family band, but we are considering VNS, because she is sick most of the time. She feels like if she feels well, even though she probably will be unable to sing, she can focus in on her instruments and maybe get on with the other aspects of her life, if possible. From personal experience, what are the risks, successes, etc. She and I are researching this and trying to count the costs. I would appreciate any help you would be willing to share. Thank you so much!! Dorene

Comments

Re: What do you think about Vagus Nerve Stimulators??

Submitted by LGS Mom on Sun, 2007-07-29 - 02:46
Hi Dorene, I can understand your concern. My daughter is 4 years old and is diagnosed with Lennox Gastaut Syndrome. After 2 years of the run around with her Neurologist locally, we changed doctors in another city. They were willing to give her an 8 hour EEG test. Because of this new Dr.'s willingness to go that extra mile, my daughter finally has a diagnosis. She qualifies for VNS surgery. Her new Dr. presented her case to the Neuro board and they unanimously agreed she is a great candidate for the surgery. My husband and I have wanted this for our daughter. She was not a candidate for the Ketogenic Diet because she has extreme food allergies. I had done endless research online on VNS, attended Cyberonics seminars, watched footage of the surgery on DVD included with a book about VNS not tainted by manufacturing company and have asked opinions from other parents with children that have VNS. I feel confident I am well informed. Still scared though. We see the Pediatric Neurosurgeon next week and surgery is scheduled by the end of August. We are hoping for great things. I hope one day my daughter will be able to sing and do music like your daughter. I hope my daughter will one day say "Mommy" and "I Love You". I know of one other child with this rare syndrome and is doing excellent. His seizures have decreased significantly. I know the greatest risk is infection during surgery. If the stimulator doesn't work, it's just turned off. You choose whether or not to have it removed but once again you risk infection with surgery to take it out. I understand it may take up to a year for the VNS to take effect. I know a 3 year old with a VNS and it's taken 14 month to reach it's full potential. She is now 4 and is able to walk with support, sip through a straw and communicate verbally without making full sentences. For parents with children with LGS, that is a true blessing. I know I rambled on and on. I do believe in this method of treatment for my daughter. I wished her previous Neuro had diagnosed her sooner so she didn't have 2 years of her life in limbo. Thanks for listening. I hope my situation helps you some and that you receive more input. One more thing, my daughter was taken off Topomax. She had severe adverse reaction to the AED. Her metabolic panel was below average across the board. Thank goodness they had the mind to check her levels at her prior Neuro. Take care, Lea

Re: Re: What do you think about Vagus Nerve Stimulators??

Submitted by bygrace11 on Sun, 2007-07-29 - 23:11
Thanks so much for your response!! Never worry about "rambling on and on." We all need to talk to one another about these things. I am always open to talking and supporting. This is a tough row to hoe. My daughter is such a sweetie and very strong emotionally for her age. I am not sure if we are hoping for too much. She was totally healthy at birth, and very bright. She was reading "Little House on the Prarie" books in kindergarten. At age 11 she started to have unusual space outs for about 12 hours at a time, then grand mals, etc. she was basically out of it for 3 1/2 years while we tried to find meds that worked, etc. She is now on Topomax and Celontin, but we're having some type of break-throughs. It's so disappointing to have stable times and then set-backs. Oh well, you gotta be thankful for the good times for sure. Could I get more specific info from you on the book you read and the dvd you watched about VNS? Thanks again for the response!!! Dorene

Re: What do you think about Vagus Nerve Stimulators??

Submitted by Missyat on Sun, 2007-07-29 - 17:22
It is now 5 years since my son was first implanted with the VNS. This is his 2nd VNS as the first one's battery went dead. My son is now 10 years old. Within the first 3 months of having the first VNS my son went 182 days without a seizure. This is one in a million case.... Because of a neglectful neuro that turned into an ex neuro my son is at around 15 a day. He is on 2 meds but been through 14 different meds now on our 6.5 years of epilepsy. My son used to have 100's of seizures a day and required a helmet... now 15 a day and NO helmet??? I will take that any time. VNS is a very difficult decision for a parent to make for their child. I know because I did it 2 times for one child. Know in your heart that it is the right thing, go into the surgery 100% sure this is it. Ask questions of the neuro and the neuro/surgeon. How many implants have they done personally, how many ''failed''? Where do you place the VNS device (my preference is in the chest left hand side) how many patients came out with infection (be sure to check the hospital) how long is the average stay for the surgery? ours was outpatient and home that night. Call Cyberonics and ask to speak to other parents in the same situation and ask them what they asked their docs.

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