Q&A Neuropace:RNS Personal Experience With Neuropace
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- Опубліковано 25 гру 2020
- If you’re young or old, I think these answers will help with any questions you may have. Please reach out if you have more questions!
Hi! I’m Katie and I’ve had the Neuropace for two years now. I’m in college and when I was first considering the Neuropace I could not find anyone to talk to and ask questions besides doctors so I wanted to answer some questions I had when I was looking for someone who could answer them. I hope hearing from personal experience helps you! Best decision I ever made!
Katiehauck2001@gmail.com Instagram @katiehauckk
nyulangone.org/give/funds/fac...
www.neuropace.com/
Thank you so much for taking the time to make this video! My SEEG monitoring is tomorrow. Really hoping they can pinpoint where to place the leads for an RNS
Thank you for making this video!!! I've had drug resistant epilepsy for nearly nine years. Since then, it has been ruining my friendships, career, and my ability to enjoy reading and have an easy conversation thanks to all of the medications. Last year, I had been discussing it with all my teams and family, It came down to be a resounding "Yes, you should go for this!"
I recently had the RNS procedure performed almost a month ago. I had my device updated for the first time last week, and everything has been going great.
Thanks for making the video!
You say "updated" one month after implantation. What does that mean? Not another surgery right?
I think I remember reading where it doesn't start stimulating right away, but just takes in data at first.
@GuillermoSmyser I received a laptop computer and a wand that I can use to download data wirelessly and send to my doctors. When I mentioned it was updated, it was updated in the office by my neurologist. That update was to change the settings and performance of the implant.
I haven't had to change doctors but all of the data that I have accumulated now has been stored with my doctors.
@@firstlast-oc5vb So you can't look at your records at any time you want? No way to, like, log in to something?
Thanks!
Question: are you able to send yourself wand-data?
For instance, if I used this for months and months but changed doctors after all that, how would I give the new doctor all the data from those previous months?
@@firstlast-oc5vb So, you can't look at your records on your own?