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NeuroPace Failure

Sun, 07/23/2017 - 20:27
Hello, I had brain surgery to install the NeuroPace device April 5th. Since then my grand mals have gone from once every month to ever 2 two months to having one every 2 weeks! My doctor has reprogrammed every month and I'm told to "give it time." I feel it's failed and made things far worse. I have a partial seizure almost daily. It's taken me about an hour to write this because I'm having a cluster of partials all day. I'm told what I have is refactoring and "won't respond to medication." I don't doubt that, I have been on 6 different medications. I've only had epilepsy that I know of for the last 5 years. It disappeared for two years and then hit back in 2014. Has anyone else had this problem with this device? I'm told "nobody has every had sent suers increase." By both my neurologist and the company.

Comments

I brian, i was just curious

Submitted by Kortney on Mon, 2018-01-22 - 21:17
I brian, i was just curious if they got it figured out or did they remove it? We are looking into.one for ourr daughter and there isnt many people out there with one... thanks in advance 

Hello.  I am having the same

Submitted by gkorsgard on Wed, 2018-04-04 - 14:01
Hello.  I am having the same problems.  RNS was activated 28 months ago.  So far, it has been no help.  Neuropace is no help for explaining why beyond "it is different for everyone".  They are great at marketing whom it allegedly has helped.  Epilepsy has been a part of my life just over 20 years.  After two temporal lobectomy surgeries and 18 different medications.  I am ready to give up.

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