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 VNS Surgery-Please comment

Wed, 05/31/2006 - 12:21
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 their child 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 VNS Surgery-Please comment

Submitted by ScottM on Wed, 2006-05-31 - 14:06
Norma. didnt your doctor give you a bunch of reading material on the VNs? mine did yesterday. even though my daughter is a candidate for the VNS procedure were waiting to try the meds first. but the package he gave me had at least 1 pamplet and 2 booklets on the procedure and a tape to watch. here's a little bit from the material. not much to go by but it works on some patients BUT not all. something like 1/3 it works, 1/3 it doesnt, and 1/3 it helps. more than likeley it wont work right away. they way it was described was it like a pace maker, (battery if you will) which has two leads that are wrapped around the VNS nerve and it is programmed by the doc after the surgry or during your first follow up visit. it sends impulse like ever 5 secs on and then 5 mins off. that depends on how freq the seizures are and what your doc progrms the device for. i know it sounds like alot of stuff but if you search on this web site for the VNS i believe theres a few post about it on here. good luck and i hope all come out well. scott

Re: Re: Date for VNS Surgery-Please comment

Submitted by norma4797 on Wed, 2006-05-31 - 19:17
Scott, Thanks for the feedback. Yes I did recieve the pamphlet and the video and read through it all. I was trying to get some information though from the receipent standpoint. I can understand your decision to wait because you have not tried medication. We have done the medication and different kinds and still no control over the seizures. I sincerely hope that your child is able to take the medication and be well with that. I have check the message board and have found some great articles. Thanks again and good luck.

Re: Date for VNS Surgery-Please comment

Submitted by Missyat on Wed, 2006-05-31 - 15:03
My son (today is his 9th birthday) is on his 2nd VNS. His first one's battery finally gave up... Implanted the 2nd time last Nov. I have never regretted doing this surgery, my son is not a candidate for any surgery except for the CC (Corpus Collosotomy, brain split). On his first VNS my son went 182 days without a seizure, and because of an arrogant neuro he lost control and he is currently down to 3 seizures a day. My son was 5 years old at his first surgery and 8 years old at his second. Call Cyberonics and ask to talk to other parents, it is ok to 2nd guess yourself at this point.. we did. Remember, the VNS is just like any med out there. There is adjustment times, getting used to it, and it can take up to 2 years to see anything. So do NOT be in a hurry. Missy

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.