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VNS Removal? Remission? Help!
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VNS Removal? Remission? Help!

My daughter is about to turn 16, diagnosed with Epilepsy at 5 years old. with partial complex and generalized seizures. Her 1st one was 45 min long, going unconcious and she stopped breathing for a short time. She saw a lot of different ped neurologists due to us being a Marine family. Tried several meds, but none subdued the seizures & video eeg showed 100's of subclinical seizures a day. They put the VNS implant in Oct 2003. All eegs prior and after were abnormal. A year after they attempted to remove her from meds, she had major seizure. So back on meds &  she was put in spec. ed & had surgery for her tonsils & adnoids removed for sleep apnea. We moved to NC and she began seeing a Dr. at UNC and after several months, growing, and turning up the machine, she had her 1st clean eeg in 2006. So, we started taking her off her meds and after a year she was med free. With the VNS turned up as much as they could for her weight and height. We then got orders for Italy in 2008 and was supposed to do an eeg post meds, but tricare messed up the referral and it was never done. She was doing well, no seizures that we could see without an eeg anddoing  good in regular school classes. So, we didn't want to push it. Now the VNS is bothering her. She has a lot of pain and the lead wire is poking out. They are sending her to an Italian dr. to do an eeg on Fri. Because the VNS might need to be removed. My question is since the VNS is still on, if she is having seizures will they show on the eeg? If it is removed could they possibly come back? We thought since she had a clean eeg and has been off meds for couple of years that she must have gone into remission, is this logical? Since the VNS is still working. Should the VNS be turned off prior to doing the EEG to make sure it isn't suppressing the seizures? Sorry, about all the info, just need a little insight, we have no one here to talk to, and paranoia is setting in. Thanks in advance.
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Dear Friend,
VNS - Vagal Nerve Stimulator.

In general, it prevents seizures by  sending regular, mild pulses of electrical energy to the brain via the vagus nerve. Vagus nerve is the tenth cranial nerve and is having an inhibitory effect in general and hence epilepsy is prevented as it's a spike activity.

Now i will answer your specific concerns -

My question is since the VNS is still on, if she is having seizures will they show on the eeg?
        No, it will not show on EEG

If it is removed could they possibly come back?
       Yes, possibility is present.

We thought since she had a clean eeg and has been off meds for couple of years that she must have gone into remission, is this logical?
        50-50 chances. Really can't give full correct answer.

Since the VNS is still working. Should the VNS be turned off prior to doing the EEG to make sure it isn't suppressing the seizures?
        VNS acts by nerve stimulation are specific intervals. It's at the treating doctor's sole discretion to decide on that, as he needs to co-relate the things and then arrive at a particular conclusion.

    
I would request you to go to a really good and proper institute and get the tests done as it's a real hard decision to take, whether to remove the VNS permanently or not.

I hope your treating centers will have adequately skilled doctors who can evaluate her and take the decision.
Feel free to discuss more.
Regards
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