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Date for Vagus Nerve Surgery
Tue, 05/30/2006 - 14:22Topic: Surgery and Devices
Hi, this is my first time on this list and posting. My daughter Claudia has had epilepsy now for 3 years. She is an active, beautiful and very social 8 year old and is an only child. She has been on many meds and still no releif. Her Doctor is Dr. Pak from UMDNJ and we reside in Bayonne NJ. We finally decided to go for the Vagus Nerve surgery which is to take place on June 1, 2006. If anyone has any info on how this worked for them please share.
I feel as if I am at my wits end with this situation. My daughter first only had partial seizures on her right side but now they seems to be traveling to the other side so the doctor felt it was time to intervene. She has only nocturnal seizures and I have seen a corrolation with anxiety and an increase in her seizure activity. Also she is not a surgical candidate because the Dr. Pak says the area is to close to were she may have a stroke. She has been on Carbatrol which she had a severe allergic reaction to and even had stevens johnson from it 6 weeks into the trewatment, depakote regular and topomax seem to affect her both physically and emotionally.
Know she take topomax in the morning with depakote ER and the same at night. Anyone with info on how their child reacted to this please share and especially how it impacted their lives. I am a single mom who is 36 and I work for the phone company full time and also attend school full time. I plan to be vocal on this board with the hope of helping others and gaining more understanding of this illness. And now that I have written so much I shall wait :)
Comments
Re: Re: Date for Vagus Nerve Surgery
Submitted by norma4797 on Thu, 2006-06-08 - 19:37
Greg,
Thanks for the feedback we are back from the hospital and so far she has had no seizures at all.
Thanks,
Norma
Re: Date for Vagus Nerve Surgery
Submitted by birdbomb on Sat, 2006-06-03 - 13:23
I would like to invite you to visit www.vnsmessageboard.com
There are over 500 members, many who have gone thru the experiance of VNS and have shared their stories, questions and fears.
Re: Date for Vagus Nerve Surgery
Submitted by vande_2004 on Fri, 2006-06-02 - 18:06
Greg You wanted to hear from someone who has the Vegus Nerve Stimulator. My name is Greg, & I had it implanted the end of 2002. For me it was implanted mostly to reduce the severity of the seizures, with a very slight chance of it controlling my seizures. Before the stimulator was implanted, I would go long periods without a seizure, then would have a severe grand mal, or a cluster of them, always placing me in status epilepticus. The 2 worst episodes before the implant were 1. a cluster of 3 grand mals back to back totalling 11 hrs 38 minutes & 2. a 10 hr 10 minute seizure, immediately followed by a 2 hr 32 minute seizure. In both of these events they didn't think I would fully recover, but I surprised them in both cases. After having the vegus nerve stimulator implanted, the grand mals stopped & the seizures have now all been complex partials instead. When they implant the stimulator there will be a period in which they will be doing a trial period in which they will be adjusting the stimulator to find the best settings. By settings, they can adjust two things... 1. the strength of the shock the stimulator sends to interrupt the seizures 2. the time of the stimulator. What I mean by this is that the stimulator can be set up that it sends a shock up on it's own anywhere from 3 to 15 minutes, plus you'd be able to activate it if you feel like you are going to have a seizure, or someone else can activate it during a seizure. If you always have a warning a few minutes before the seizure, they can set it up so it only sends the shock when you use the magnet. I hope that this info is helpful. It was a help for me, but my seizures were so severe, I had brain surgery for the second time on March 13, 2006. I hope that your daughter doesn't have to go through all that I have, & that the stimulator is the answer to all her problems.