First published: May 15, 2026
Real-world outcomes of responsive neurostimulation in patients with Lennox–Gastaut syndrome: A multicenter retrospective study
Lennox–Gastaut syndrome (LGS) involves several different seizure types and developmental differences, and for most families, the hardest part is that LGS seizures rarely respond well to medication. When medications aren’t enough, care teams often look at neuromodulation. This study looked at responsive neurostimulation (RNS), and asked a straightforward question: in real families, outside of a research trial, does it help?
The Why:
- Three neuromodulation devices exist for epilepsy: vagus nerve stimulation (VNS), deep brain stimulation (DBS), and RNS. Only VNS is FDA-approved for children.
- RNS works differently. VNS and DBS deliver stimulation continuously on a preset schedule. RNS listens to brain activity around the clock and stimulates only when it detects patterns that come before a seizure, aiming to stop it before it spreads.
- Evidence has been thin. Most prior studies were small, single-hospital reports, or mixed LGS individuals with other kinds of epilepsy. This study set out to fill that gap.
The How:
- 37 people with LGS across 4 hospitals who had an RNS device implanted were included.
- Seizure improvement was measured by comparing frequency before and after the device, based on family reports confirmed by the clinical team.
The What – Key Findings:
- About six in ten had seizures cut at least in half. 23 of 37 patients (62%) were “responders.” Four (10%) were “super-responders” with a 90% or greater reduction.
- Stimulating the thalamus alone worked well. Most individuals (76%) had electrodes placed in the centromedian nucleus (CMN) of the thalamus, a region with broad connections throughout the brain that plays a key role in the widespread seizure activity seen in LGS.
- Medication changes were modest. Four patients (10%) reduced medication; 13 (35%) increased. RNS was an addition to treatment, not a replacement.
- The treatment was generally safe and well-tolerated Ten patients (27%) had side effects, most often tingling or pain in the face or arm. Eight of those ten were resolved simply by adjusting the device settings.
The Importance:
- This is one of the largest LGS-specific RNS studies to date, and the first to pool standardized data across multiple major centers, offering families real-world numbers rather than single-clinic anecdotes.
- The takeaway for families: RNS targeting the CMN is a reasonable option to raise with your epilepsy team when medications haven’t been enough, with realistic expectations about both what it may offer and what it asks of you.
Updated 08/20/26 (AM)
