Comment by AbstractH24

13 hours ago

Most of this already exists, and I already have it implanted in my brain

https://www.neuropace.com/

Articles can be weird sometimes in the details they include/omit.

6 comments

AbstractH24

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Erem  11 hours ago

How has the RNS worked for you? I was a member of the ~4 person research team there for about 5 years and it’s cool beyond belief to see someone using it in the wild on my favorite forum.

  • AbstractH24  9 hours ago

    It's been 4 years since I got it, and been quite a journey. I'll do my best to try and answer the question succinctly:

    The RNS succeeded as a tool for capturing orders of magnitude more detailed data about how my brain functions and how medication impacts it. It also had some success in reducing the the severity of the fairly infrequent clinical seizure I do have. But, not only did it fail to live up to its promise of getting me off medication, it didn't even prevent me from needing to start taking one that's effective but has some pretty strong side effects (Xcopri).

    Titrating onto Xcopri is a long, slow process. I started over the summer, and my doctor could see immediately see the degrees at which subclinical seizure-like activity stopped. Then, as the titration continued and the side effects started to become noticeable, my doctor could see how adjusting my other meds to reduce side effects impacted activity and could do so comfortably with a much finer tooth comb than he would otherwise.

    Without the information the RNS provides, I would likely be unable to tolerate the Xcopri and the next step would be another brain surgery (although without the RNS, my epilepsy would appear to be much better controlled than it is. Because I rarely have a clinical seizure.)

    So it seems to me that while these implanted devices have real power in their ability to collect data, their ability to reliably alter the brain function is questionable. But that data itself is huge . Hope you keep working in the space!

    (glad to answer more questions; feel free to ask or DM me. I'm a bit more informed about this than the average bear)

carljungslabtek  12 hours ago

Wow that’s awesome to see. Sorry you have epilepsy but what an exciting time for medicine.

  • AbstractH24  9 hours ago

    Thanks for the wishes. I'm super lucky for the time I live in and access to cutting-edge medical care.

    Other than a slightly worse-than-normal memory, I live a pretty normal life. Most people don't realize even I have epilepsy, let alone a computer in my skull with wires running deep into my brain sending electric pulses.

    If I didn't live when I did and where I do (NYC) my life would be very different. And relative to many others, my seizures are not so bad.