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RNS device

Hello. I'd love to hear from anyone who has the RNS implant device (from Neuropace), and how long it has taken to truly be effective. My young adult son has had it for almost a year now. We only see moderate success. He has bi-temporal, medicine-resistant focal epilepsy. He is 26, and was diagnosed at age 20. I understand that each person's situation is unique. I had hoped to see more success by now. Thanks for your comments.

Comments

Hi Rdb, Thanks so much for

Hi Rdb, Thanks so much for posting, it sounds like you all have been through a lot. It’s important that you all continue to follow-up with your son’s healthcare team to express your concerns, as well as, any changes in behaviors, symptoms, side effects or seizure types/frequency. For additional information about RNS Therapy, please visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/re... Goals and expectations for surgery will vary for each person. Goals for surgery may include freedom from seizures, fewer or no disabling seizures, stopping or reducing medications, and increasing independence. The role that family members play in the life of a person with epilepsy may change after surgery. Lean more about goals, expectations and things to review with his epilepsy team, here: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/go... Recovering from epilepsy surgery is a journey. For additional resources & information about the recovery process, common themes for people living with epilepsy and family members during their journey through epilepsy surgery, visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/re... is common for those who are in caretaker role to feel overwhelmed. It’s important to remember that you are not alone, and it is just as  important to make sure you’re taking care of yourself as well.  https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20facts... can be helpful to connect with other parents who care for those with epilepsy, to ask questions, share experiences, find & give support to each other, by visiting:  https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-...  The Wellness Institute: epilepsy.com/wellness  ,provides tools and strategies to better assist your loved one and support you in your important role.For practical & effective strategies to enhance your well-being, learn more here:  https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-toolsA..., you may also contact our Epilepsy and Seizures 24/7 Helpline:1-800-332-1000 contactus@efa.org, where a trained information specialist can connect you to resources, provide referrals and additional support. epilepsy.com/helpline

I had the RNS system

I had the RNS system implanted in June of this year.  I've actually had an increase in seizures which I think had a lot to do with the Norco (hydrocodone) they gave me for pain.  Norco can reduce the seizure threshold.  Since the implant they have done two more brain surgeries.  One was to change some wiring, and just a couple weeks ago I had an infected lead.  So it's hard for me to say just how effective RNS has been.  I read some statements that it's good to think of RNS as a treatment that retrains the brain.  No doctor has explained it to me like this but I believe that doctors know the active areas where the seizures come from, and they also know the less active areas nearby.  By putting stimulation to those less active sites when seizures occur the brain can be trained to change its pattern.  Neuroplasticity is defined as the ability of the brain to form and reorganize synaptic connections, especially in response to learning or experience or following injury.  Such healing takes time but provides more lasting benefits.Mike

Thanks Mike.  I'm sorry to

Thanks Mike.  I'm sorry to hear of your troubles with the device.  We have heard also, that it takes time.  It's just very hard to watch my son's life decline in his early 20s.  I hang on to much hope that the device will really work.  

Thanks Mike.  I'm sorry to

Thanks Mike.  I'm sorry to hear of your troubles with the device.  We have heard also, that it takes time.  It's just very hard to watch my son's life decline in his early 20s.  I hang on to much hope that the device will really work.  

Wow!  Thanks so much for all

Wow!  Thanks so much for all the resources.  We are fortunate to be working with Mayo Clinic, as we live in a state with Mayo.  We continue to see them on a regular basis, so the medical piece is in progress, especially with the RNS.  I'm really concerned about his quality of living, i.e.: sleep, stress management, social, diet, etc.  All of those other things that go with epilepsy. That's what I'm trying to work on with him for now.  I'm trying to find resources to figure out how to get him out of the house each day (he doesn't work), so he can feel purpose and contribute.  It's tough with a 26 year-old male.  He's only open to a few things.  His mail goal is to get off the meds.  He hates what they do to him.  Thanks again for our help. 

Hello My name is Ken. I hope

Hello My name is Ken. I hope your well. I actually had 2 brain surgeries my second brain surgery was the RNS Neuropace on the right side of my brain and I have noticed some improvements since the surgery. They have decreased and I as well see my Neurologist and the doctors of the Neuropace every month. They did adjust it twice since it was implanted in me. I did actually have a prior surgery called a temporal laboratory surgery which they ended up removing 9 centimeters of my left temporal lobe since my seizures did start on my left side which was my dominant so that surgery did cause me to now have memory issues , as well as spelling and speach problems so it was a very hard decision to make but I did go seizure free for 6 months then all the sudden my seizures came back so I ended up staying back in Hershey Meds EMU and that’s when they saw my seizures went to my right side of my temporal lobe and since I was having 15 to 20 seizures a day before my original surgery my brain was so damaged so the only option at that point was for me to get the RNS implanted in the right side and I was told it could take up to a year to get up to a 70% release of seizures and honestly i have noticed a difference and a little bit of a decrease in my seizures. I do know when they first implanted the RNS I had to wait 2 months before they could make any kind of adjustment to it and since it’s only been adjusted twice. I just have to scan my head every day with the laptop they sent me and this WAND hang in their things will definitely get better. Please feel free to send me a message if you have any questions or just want to chat. God Bless You and your family. 

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