Responsive neurostimulation (RNS) as an epilepsy treatment?

My son has had Seizures since age 7. He has been on several seizure medications with very little success. X-copri was the one seizure medication that did improve his seizures. The VNS surgery helped a little however, it was difficult for him because he loves to sing & the VNS changed his voice. The RNS surgery was extremely helpful because after a couple of years of analyzing the data from the RNS they were able to locate the area of his brain where the seizures were starting from. With that information he had LITT surgery in which a small area of his hippocampus & amygdala were removed. He had this surgery on 9/9/25 and he has been seizure free since 9/10/25. Headaches are gone, memory has improved, and his seizure medications are slowly being reduced! I feel like now we can really start living... In hindsight I wish we would have opted for the RNS sooner because I think he did loose some precious time & ability... however, our God & the brain are amazing & restoration is possible. He is now 22. This has definitely been a game changer for all of us... This was just our experience...My heart does go out for all of you that are having to go down this very difficult road. I know that sometimes you feel so helpless & it is hard to hold onto hope but don't give up! Sending prayers your way... thank you. Casey (mom)

My son has had Seizures since age 7. He has been on several seizure medications with very little success. X-copri was the one seizure medication that did improve his seizures. The VNS surgery helped a little however, it was difficult for him because he loves to sing & the VNS changed his voice. The RNS surgery was extremely helpful because after a couple of years of analyzing the data from the RNS they were able to locate the area of his brain where the seizures were starting from. With that information he had LITT surgery in which a small area of his hippocampus & amygdala were removed. He had this surgery on 9/9/25 and he has been seizure free since 9/10/25. Headaches are gone, memory has improved, and his seizure medications are slowly being reduced! I feel like now we can really start living... In hindsight I wish we would have opted for the RNS sooner because I think he did loose some precious time & ability... however, our God & the brain are amazing & restoration is possible. He is now 22. This has definitely been a game changer for all of us... This was just our experience...My heart does go out for all of you that are having to go down this very difficult road. I know that sometimes you feel so helpless & it is hard to hold onto hope but don't give up! Sending prayers your way... thank you. Casey (mom)

@caseybach thank you so much for the information you shared. I am about to have the RNS surgery and it's nice to have someone with personal experience. Even though I'm very sorry you have that personal experience.

@absentsenior - when will you be having the surgery? How are you feeling as you get closer to it?

@absentsenior - I moved your post here to this discussion so that you could talk with others who have chatted about responsive neurostimulation (RNS) and its surgical implantation for epilepsy:

- Responsive neurostimulation (RNS) as an epilepsy treatment? https://connect.mayoclinic.org/discussion/rns/

Hoping members such as @barbj7 @caseybach @heal33 @bonton can speak to how they and their doctor decided to proceed or not proceed with this option for themselves or for a loved one. If they did do the surgical implantation of the RNS, I'm hoping they can talk about how the surgery and recovery went, and how it has worked since then. @santosha @brjudevo79 @grammy82 and @jakedduck1 also may have some thoughts to share about RNS.

Has your neurologist or epileptologist recommended temporal lobe RNS surgery for you, absentsenior? How do you feel about this option?

@caseybach
Congratulations on your son's seizure control.
I was curious if he's had the VNS removed, including the wires & electrodes from his vagus nerve and/or the RNS?
Thank you for sharing your sons journey. It's always uplifting to hear about a positive epilepsy outcome.
Take care,
Jake

@caseybach - what great news!

@caseybach thank you so much for the information you shared. I am about to have the RNS surgery and it's nice to have someone with personal experience. Even though I'm very sorry you have that personal experience.