Comment by AbstractH24

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)