This post is part of the Epilepsy Blog Relay™.
I’m 36 now and had my first seizure when I was 23 in my sleep. Why? Who knows. There’s still no clear answer about anything.
VNS and RNS
I have the VNS and the RNS and the seizures still overpower both of these gadgets. I am learning to live with these but my seizures are still uncontrolled and have a mind of their own. Just when I think I’m doing good for a week…BAM… I have another seizure.
What is VNS?
According to LivaNova, the company that provides the VNS Therapy System, VNS is delivered through a device that sends mild pulses to the vagus nerve at regular intervals throughout the day in an effort to prevent seizures. The hope is that an additional dose of therapy may stop or shorten your seizure, decrease its intensity and improve your recovery. VNS Therapy includes a short outpatient procedure which takes about an hour. VNS Therapy does not involve brain surgery.
What is RNS?
According to NeuroPace, Inc., the company that provides the RNS® System, The RNS® System consists of a small, implantable neurostimulator connected to leads (tiny wires) that are placed in up to two seizure onset areas. It comes with a simple remote monitor that you use at home to wirelessly collect information from the neurostimulator and then transfer it to the Patient Data Management System (PDMS). Your doctor can log into the PDMS at any time to review accurate, ongoing information about your seizure activity and treatment progress. This helps your doctor learn more about your seizures and improve your care.
The RNS® System involves a surgical procedure that is performed by a trained neurosurgeon. Prior to the procedure, your medical team conducts diagnostic testing to identify the location in your brain where your seizures start. During the procedure, your surgeon positions the leads at the seizure source and places the neurostimulator in your skull. Once implanted, the device is hidden under your scalp—unnoticeable to you and others. Most patients go home the next day. The RNS System is a reversible treatment that does not involve removing any brain tissue.
Then my mom is in my face in the middle of the night crying over me like it’s my first one. I still can’t help but apologize to her every single time I have one.
Taking a positive approach
All the meds I’ve tried — and all the surgeries — and my seizures are still not controlled. But it could be worse, right? I had some pretty bad thoughts but out of all this I was blessed with a beautiful daughter. She has been my strength because honestly if it weren’t for her, I would’ve given up a long time ago.
NEXT UP: Be sure to check out the next post tomorrow at https://livingwellwithepilepsy.com.