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.

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Bonnie | @bonton | Feb 21, 2022

Thank for the thoughts. My daughter has absence ,partial seizures. They believe at this point that the focal point is in the frontal lobe. I think the only surgery she wants to consider is the RNS placement. . The main objective is to reduce medications to 2-3, due to side effects of taking 6 different meds.

Teresa, Volunteer Mentor | @hopeful33250 | Feb 21, 2022

Hello All:

A Mayo Clinic Minute was published about brain pacemarkers to help with the with epilepsy, a seizure disorder caused by abnormal brain activity. I encourage you to read the article and to also watch the video about this procedure with Mayo Dr. Richard Zimmerman
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-what-is-a-brain-pacemaker/

Leonard | @jakedduck1 | Feb 21, 2022

@hopeful33250
Thank you for posting this information Teresa.
Jake

Chris Gautier, Volunteer Mentor | @santosha | Feb 22, 2022

Hi Bonnie/@bonton
I also have refractory epilepsy (Temporal Lobe) and RNS has also been recommended to me.
I still see the RNS as a brain surgery, something that has to be analyzed with much care.
Have you heard of TES? It is a brain stimulator that helps to reduce seizures and does not require surgery. The company that offers that I know is called Neuroelectrics: https://www.neuroelectrics.com. They even have a TES stimulator - home system. This is something I have been considering with my doctor.
As @jakedduck1 said, surgery can have serious complications. I participate in an epilepsy group in which some members had the surgery Temporal Lobectomy. All are now seizure-free, but still dependent on medication/AED. Loss of memory is the complication most of them have since the surgery.
Here are some links with the TES solution of Neuroelectrics:
https://www.neuroelectrics.com/solutions/starstim
https://www.neuroelectrics.com/solutions/starstimhome
All the best to you and your daughter.
Santosha

Leonard | @jakedduck1 | Feb 22, 2022

@santosha
Great information Santosha, thanks.
Jake

Chris Gautier, Volunteer Mentor | @santosha | Feb 22, 2022

In reply to @jakedduck1 "@Santosha Great information Santosha, thanks. Jake" + (show)

My pleasure Leonard (@jakedduck1)! Santosha

barbj7 | @barbj7 | Nov 17, 2023

In reply to @santosha "Hi Bonnie/@bonton I also have refractory epilepsy (Temporal Lobe) and RNS has also been recommended to..." + (show)

My son who is 39 is in the process of scheduling surgery for RNS device. I would love feedback from some people who have had this done and their experiences.
Thanks
Barbjnorr7@gmail.com

absentsenior | @absentsenior | 6 days ago

Has anyone been through Temporal Lobe RNS surgery. I'd appreciate some insight.

Lisa Lucier, Moderator | @lisalucier | 4 days ago

In reply to @absentsenior "Has anyone been through Temporal Lobe RNS surgery. I'd appreciate some insight." + (show)

@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 | @caseybach | 4 days ago

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)