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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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 OR Santosha | @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 OR Santosha | @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