There’s a limit to the number of characters that’ll fit in the title of a blog entry, so the initials stand for
Responsive Neurostimulator: Your Monitor May Vary
When I was getting prepped for surgery, a representative from NeuroPace showed me the monitor I’d be using during the time when the RNS device is in read-only mode: Model 5106.
Up to that point, I only had generic information about the function of the monitor. When the rep asked me what I knew about the first part of the process, I could explain exactly what it was supposed to do—the computer won’t actually prevent seizures for the first month or so, etc.—but this was the first time I’d actually seen what I’d be using before the device becomes active. And because it was mildly irritating that I couldn’t find any pictures online and no doctors would tell me what I’d be using, I decided to take some pictures to show all of you. (Just remember that anyone who has an RNS device installed may receive different hardware to work with than what you’re seeing below.)
First off, the tablet and wand. They said that the RNS device can store about a week’s worth of seizure data, so upload the information up to the cloud every day. Hold the wand (that handheld device above the tablet) against my head next to the RNS device, push the “Get data from your Neurostimulator” button, then just wait as it goes through the uploading process.
The wand sits comfortably against the curve of the skull—the tablet indicates when it’s close enough to the RNS device to upload the information.
I think I previously mentioned the bookmarking process when I’m having a seizure. Slowly swipe the thingamabob over where the RNS device is for about three seconds and the computer will be able to identify when the seizure is happening and thus what kind of brain wave activity should cause the device to activate to prevent seizures in the future.
I was never able to find an image online of the thingamabob. Is it tiny? Is it the size of a computer mouse? Do I need to keep it on a bracelet or something so it’s immediately available to swipe over my head when I’m having a seizure? And it turns out that it’s a little 2″ magnet with a carabiner that I keep attached to the front belt loop of my jeans. I need to be careful when walking near metal things (washing machines, door frames, laptop computers, sinks, etc.), but if the RNS device does what it’s supposed to do effectively, it’ll all be worth the hassle.
And I just want to clarify again that if you or someone you know receives an RNS device, that monitoring hardware may not be the same is mine. Nevertheless, I thought people might appreciate seeing what NeuroPace gave me to use for this first part of the process that’ll hopefully limit or prevent seizures in the future. Once this first part is over, I’ll need to give it back, but again, if using it effectively limits or prevents seizure activity, I’ll have no problem with returning it.