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Thinking About Neuropace(RNS) Has It Worked For Anyone?

A MyEpilepsyTeam Member asked a question 💭
Kentucky

I've had the VNS for over 6 years, now thinking about the neuropace (RNS) chip. Has anyone had the surgery for the RNS and how well has it worked for you? Drugs work for awhile and then stop, there are no more drugs out there to try. I am out of options. I had a mri and pet scans done and they didn't show anything new. I know the location is on my left side and could effect memory and speech, but doctors can not pin point to the exact location. More test would have to be done. I am afraid… read more

December 30, 2016
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A MyEpilepsyTeam Member

First of all, please do not be afraid. I have an NeuroPace (VNS wasn't for me due to the loci of the seizures) that was implanted last July, 2016. It was turned on in October, 2016. I've had seizures for 37+ years. My issue is that I have seizures that come from various locations so there is no one solution.
Prior to the implant, I had 5 separate surgeries (open to insert graphs, close to remove graphs) so that graphs were placed on and probes placed in my brain to find out where the seizures came from. The first graph wasn't placed exactly where they originally thought my seizures were coming from so I gladly went through the second round to see if the source could be specifically determined. The goal was to resect the area in which the seizures initiated. The third round they implanted the NeuroPace. Being in the hospital for the 2 week period each time with no medications and being monitored 24/7, go home for a month to recoup while missing part of my cranium, going back to the hospital again, etc. was not the most fun I've ever had but the hospital employees and doctors kept me up to speed at all times.
During the 2nd hospital stay, my epileptologist did a brain mapping on me to see what parts of my brain were affected by the seizure area that was determined by the monitoring phases. The brain mapping is painless. All you need to do is read aloud for the doctor and look at pictures - just tell them when your vision is off or you see strange visual things. There is no pain at all but it is eerie when they ask you to read and for whatever reason, you can't get one word out. That happens when they are activating an area that is linked to your speech. The pulse somehow neutralizes your ability to speak. It is a long test but it is worth every second it takes so the doctors can be sure where the seizures are coming from. Had they done a resection without the brain mapping, I would have lost my sight and most of my ability to speak. Thus, since resection was not an option, the doctors moved on to the NeuroPace.
In regard to being afraid, you need to decide if you want to live your life as you are now or if you want a better quality of life. Having 40-50 seizures a week wasn't for me. I made the right decision for me but only you can make the right decision for you. I wish you well.

February 15, 2017
A MyEpilepsyTeam Member

I called them "odd electrical" in error as my doctor told me the symptoms were due to withdrawal from a medication and not from the NeuroPace. Mea culpa.

June 2, 2017
A MyEpilepsyTeam Member

I haven't had a seizure since it was turned on. I still have odd electrical stuff going on, but no seizures since it was activated.

March 22, 2017
A MyEpilepsyTeam Member

what odd electrical stuff? I am looking at this also?

June 1, 2017
A MyEpilepsyTeam Member

How many do you have now?

March 21, 2017

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