RNS device

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 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 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.