Does anyone know anything about the NeuroPace or have they had it done themselves?
NeuroPace has three different devices for three different Epilepsy treatments.
1. VNS ( vagus nerve stimulator )
2. RNS ( Responsive NeuroStimulator )
3. DBS ( deep brain stimulator )
I have done the VNS and had a upcoming appt. For the DBS.
There are a lot of websites about these treatments. You could start with the Epilepsy Foundation. Your Dr. ( Neurologist/ Epileptologist ) Should know about them too .
What do you do for support when you have seizures a lot and you've had them for a rather long time? My question to everyone on the virtual world is how do you cope with everything where do you turn? I want to let you know that I am a proud supporter have a group that I started back in 2010. It is called the New Hope-Epilepsy Support Group. I am a true warrior with seizures!! I have went through hell and back with my seizures! But, I have learned that we all must stick together because it lifts us up and motivates us! In 2010 I started a coffee shop that grew and grew and Grand Rapids Michigan and then I worked with the Epilepsy Foundation and here I am today virtually talking to several people online once a month and keynote speakers online to answer the toughest questions that there is to answer with seizures. I believe we get hidden within the closet per say! But the truth of the matter is that we must be heard! I want to support you just the way I would want someone to support me when they know I have to deal with seizures as well! If you are interested in coming enjoying one of our meetings once a month then I can definitely tell you that you will benefit from it. Please let me know if you are interested and I will give you our next Zoom meeting to join our New Hope- Epilepsy Support Group meeting!
I also have VNS. I am currently on my 3rd VNS device. I really do not know if having or not having my VNS would have controlled my seizures. I am still on meds, as well.
I just had my NeuroPace implant done in January. It was "activated" in June. I am the 12th patient to receive it in my hospital. So far, I am still having episodes, but it is to be expected as I am still in the fine tuning stages.
Thank you @A MyEpilepsyTeam Member