Wondering if anyone has had the vagus nerve stimulation?

Our son has had vns since 1998. But first they tried almost every seizure drug and combination of drugs for years and years. So vns might be helpful but doctors try meds first.
He takes 4 seizure meds and seizures are kept from being too severe. VNS helps some.
His seizures are so extreme that he has now received a deep brain stimulator. It hasn’t been programmed yet so still waiting to see results.
So try all the medications before considering a vns. The battery has to be surgically replaced every few years.

@happyrivers9 thank you for the feedback and sharing about your son’s journey. I would love to hear how the deep brain stimulator works for him. I’m hopeful for all of you that it brings more relief from his seizures.

Deep brain stimulator was programmed 10/3/24 at Mayo so it’s only been on a few days. So far so good. It has 3 programs with different frequencies which we can change with his handheld Bluetooth device.

Hi, @happyrivers9 - how are things going with the deep brain stimulator programmed last month?

@acpsulli - wondering how your son is doing? Are you still investigating vagus nerve stimulation?

Deep brain stimulation going well. My son seems to be having much fewer seizures.
He has had a vagus nerve stimulator since 1998. It helps some. The deep brain stimulator has a rechargeable battery but the VNS does not. The VNS battery should last 5 years or so. But his VNS activates every 30 seconds so every 2 years they take him to surgery and replace the battery. So he now has a deep brain and a vagus nerve stimulator. 2 devices.

He has a rare form of epilepsy called Lennox-Gastaut Syndrome (LGS) a rare and severe form of epilepsy that began at age 4. It’s characterized by multiple types of seizures, cognitive impairment. His cognitive impairment is mild. He often often experiences tonic (stiffening) and atonic (drop) seizures.
He has to wear a helmet so when he falls he won’t hit his head.
They can’t completely control his condition even with these 2 devices and lots of seizure medications. His seizures are less severe and not as often.

Hello all,
I am new here to this website but in need of some help. My son is 32 years old, autistic and has had seizures since he was 19. We went through much trial and error before his neurologist was able to get him on a trio of meds, zonisimide, gabapentin and lamotrigine er, that has helped tremendously with him having a breakthrough gran mal about every 2 years but he has alot of focal seizures lasting less then a minute total. He doesn't loose consciousness with these but we had an ambulatory eeg done that showed he has almost constant seizure activity in his brain. He has only had 1 other ambulatory eeg done before and that was 12 or 13 years ago when his seizures first started. He has been having the small focal seizures for a long time. Neurologist told me these were breakthrough seizures and is really pushing vagus nerve stimulator therapy. His dad and I have been doing alotvof research and dont think this is best for him. The possible side effects are very scary and due to Eli having autism he has a very limited understanding of things. He never knows when he is going to have a seizure so him havingva magnet to scan the vagus nerve implant isnt going to be helpful. He would still need to be on meds and there are no guarantees this will even help him. As his mother i suffer from a damaged vagus nerve that occurred during surgery and I have chronic gastroparesis. We are afraid of the vns. I got a little upset with his neurologist because they ask me how did I plan to control his seizure activity if we don't do the vns. I told her, as his doctor I thought they were supposed to come up with another plan, not us. I am so frustrated and worried for him. Any comments or help is greatly appreciated.
Worried mom here!
Sharon

Welcome to Mayo Clinic Connect, @sb7.

It sounds as though you didn't feel the VNS was the best step in your son's particular case.

Did your doctor offer any alternatives? If so, what do you plan to pursue for treatment?

Sharon
My son 37 ha suffered with focal and general seizures for 27 years. We take 4 AE meds and he has had laser ablation of the hipicantos and a VNS implant 18 months ago. Unfortunately he still has 15-25 seizures every month. His doctors are now asking us to consider a DBS (Deep Brain Stimulator), The entire VNS procedure, and recovery was beetter than I expected. As for effectiveness, if you wand the implant within the first minute of a seizure it definitely stops the building of the seizure's momentum and duration. It also prevents subsequent clusters which are very dangerous. My son has not premonition of a oncoming seizure, and when they start, it's too late for a self-wanding activation, so be prepared to give all his care-givers a magnet to wear all the time. Overall I would give the VNS a good grade. Depending upon the level of your son's autism , I would be more worried about post-operative recovery and healing. Sorry to hear your doctor has not developed a alternative treatment options. Perhaps you need to seek another opinion. We go to Mayo Clinic in Jacksonville. Good luck and feel to reach-out to me for any follow-up questions. James

Thank you so much for the info. I am so sorry you are going through this with your son. It is such a scary and overwhelming thing to go through .
My husband is pretty much a no-go with the VNS . We do have a consult with a surgeon next month to at least hear what he says but we do plan on getting a second opinion
I will remember you in my prayers.
Sharon B

Thank you for the comment. Unfortunately the neurologist offered no alternative plans and I was actually offended and upset with her asking me how I planned to control his seizures if we dont do vns. I thought that was the doctors job. I dont have the knowledge to do so and I am sure there are many people out there that did not go the vns route. Ultimately we only want what's best for our son. We have a consult with a surgeon next month to hear what he has to say but we are planning on getting a second opinion. There must be other options than vns or surgery.
Thank you,
Sharon B