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Responsive neurostimulation (RNS) as an epilepsy treatment?

Posted by caseybach @caseybach, Sep 9, 2020

I am wondering what experiences people have had with RNS. My son has had seizures since he was 7, has tried several different sezure medications and is currently on Brivacta, Onfi, Oxycarbazepine & has a VNS. Still having 4-6 seizures a month. RNS is our next hope, so if anybody has any personal experiences or info. I would greatly appreciate it. Thank you Casey.

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caseybach | @caseybach | 2 days ago

No Logan still has the VNS & RNS & they are still functioning. He still continues on Onfi, Briviact, X-copri, Lacosamide.
Honestly for about 3 months after his LITT surgery it was very difficult. I really thought we had made the wrong decision. He experienced stroke like symptoms, he was having hallucinations & was sleeping much of the day. However, I think once we started to decrease his meds & the swelling went down. The new & improved Logan showed up!

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caseybach | @caseybach | 2 days ago
In reply to @absentsenior "@caseybach thank you so much for the information you shared. I am about to have the..." + (show)
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@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.

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@absentsenior

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caseybach | @caseybach | 2 days ago

Thank you, still holding my breath & praying that Logan is truly healed. I am beyond grateful to our Lord! Praying for breakthrough for everyone with seizures.

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caseybach | @caseybach | 2 days ago
In reply to @jakedduck1 "@caseybach Congratulations on your son's seizure control. I was curious if he's had the VNS removed,..." + (show)
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@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

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@jakedduck1

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absentsenior | @absentsenior | 2 days ago
In reply to @lisalucier "@absentsenior - I moved your post here to this discussion so that you could talk with..." + (show)
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@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?

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@lisalucier The surgery is scheduled with many tests prior. I've not had much luck with drugs. I seem to attract negative side effects. As mt Neurologist told me in the beginning. "We have to find a cocktail of drugs that will control your seizures and that you can live with the side effects". My epilepsy has grown or spread from originating in my right temporal lobe and bouncing to my left, to originating in both temporal lobes. My memory was once described as a library with seizures being storms that damaged and destroyed the books (memories) in the library. I've reached the point that too many books have been destroyed and cannot be replaced, that now the librarian herself is at risk. Surgery has always been the absolute last resort for me. Really. Who wants anybody tip toeing thru their brain. Hopefully they'll find all the weeds.

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absentsenior | @absentsenior | 3 days ago
In reply to @lisalucier "@absentsenior - when will you be having the surgery? How are you feeling as you get..." + (show)
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@absentsenior - when will you be having the surgery? How are you feeling as you get closer to it?

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@lisalucier I i am so buried in tests that I haven't had much time to think.I have a Cog test next week and after that the ball will roll faster. Surgery is 23Feb26. Frankly, I'm trying not to overthink it. My biggest worry right now is how to keep my head warm. LOL!

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Lisa Lucier, Moderator | @lisalucier | 3 days ago
In reply to @absentsenior "@caseybach thank you so much for the information you shared. I am about to have the..." + (show)
Profile picture for absentsenior @absentsenior

@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.

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

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Lisa Lucier, Moderator | @lisalucier | 3 days ago
In reply to @caseybach "My son has had Seizures since age 7. He has been on several seizure medications with..." + (show)
Profile picture for caseybach @caseybach

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)

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@caseybach - what great news!

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