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Does anybody have a VNS and an RNS that work together? Im trying to get the RNS but at a Previous meeting my dr said they were unsure because i already have a VNS. The last time we spoke to her she said shes spoken to other dr’s and they do have patients who have both and that they work together somehow? My VNS doesnt help me thats why she told us that, i told her we can turn it off and she gave us that info. I’d like to know if there’s anyone on the app who has both and how they work for… read more
Yes they are, the VNS gas a battery implanted in my chest, like a pacemaker almost, with a wite attached that connects to my vagus nerve, also on the left, in my lower neck.the RNS would have leads , and it would sense a seizure and send a shock before it happens to try to stop it, the vns sends shocks on a regular basis, and im supposed to use a magnet over the battery when i have a seizure but nothing happens so i stopped trying. But im hoping the RNS would help the VNS, with the combination. Theyre doing all kinds of tests, to see if its a good idea, itd be a 3 week eeg evaluation before the surgery if im approved.
@A MyEpilepsyTeam Member my medicaid wont remove it, they can just turn it off, but i see no point in doing so because it could be helping slightly for all i know.
Do you use your magnet when an aura starts occurring, or do others use it while a seizure is occurring? It's not a miracle implant, but those awful pills my brain rejected and caused brain trauma were taken away and I had nothing. I've just tried a new pill on the market that I've finally found to make me feel normal and is working with my VNS and brain. I haven't had a single seizure both small to worse in 4 months. Briviact is the medicine... talk to your Dr about it, as it is also safe for children!!!!😀
I am sure you will get responses from others, but here is a link to Q + A, that you can move down at the questions and responses of others on these subjects:
https://www.myepilepsyteam.com/questions/new
If you want your own specific question, then just edit the one I started and post it.
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