Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
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: Date for Vagus Nerve Surgery
Submitted by Zada_Angel on Thu, 2006-06-08 - 21:59
Yes I had the VNS surgury about 9 months ago if you have any questions I don't mind answering trust me I know how you feel it was a long and mind draing process till the surgery as well as after. Any questions just write. Zada
Re: Date for Vagus Nerve Surgery
Submitted by kathy t. on Tue, 2006-06-13 - 08:00
My daughter had the VNS implant several years ago. It worked well for about a year, but after that it really hasn't helped at all. Her first implant stopped all her seizures that we could 'visually' see but I noticed after a couple of months that it wasn't working correctly..the intervals of it going off were not correct etc. I could tell by the change in her voice when it was going off. I told her Drs and they kept telling me basically I was 'crazy' and it was working fine. After much insistence on my part and several more visits, it finally malfuctioned in front of them when they were interogating the device. They admitted they were in denial of it malfunctioning pretty much due to they had never had a incidence of that happening before. The time lapse between their admitting the device was faulty and the surgery to replace the device was a couple of months. I think that time lapse contributed to the newly implanted device not working as well for her.
I do have to say that her best friend also has a VNS implant as well and after a few years it's not helping her much either. I think maybe the body gets used to it and adjusts to tolerate it etc after awhile. Not to say this is the case for everyone..just I know it's the case with my daughter and her friend.
My daughter ended up having split brain surgery last September and that has helped quite a bit in controlling her seizures along w/ medications. Her best friend is in the process of a 2 step brain surgery..the 1st surgery being yesterday morning to 'map' her brain and they will do the other surgery in a few days to remove parts of her brain to control seizures when they have sufficient information from the mapping to proceed with that part of the surgery.
I hope the VNS implant works well for everyone that tries it. Definately worth it to try everything possible before proceeding to do the brain surgery. Good luck to you all! :-)
Re: Re: Date for Vagus Nerve Surgery
Submitted by norma4797 on Thu, 2006-06-08 - 19:37
Thanks, I will check it out.