Sara has a great team of doctors at NYU Comprehensive Epilepsy Center. Her doctors suggested she may be a candidate for an implanted device to help control her seizures called a “Vagus Nerve Stimulator” or VNS. I researched this option after Sara failed to benefit from multiple trials of seizure medications. The Epilepsy center also screened Sara for brain surgery for the third time. Sara proved not to be a candidate. The Vagus Nerve Stimulator is expected to reduce the frequency of seizures, reduce the length of the event, and some patients may go on less medication.

When I considered this treatment I needed Sara to have the maturity to understand what the device was going to do, understand the risks of surgery, and then have Sara have the device implanted. The neurosurgeon, Dr. Werner Doyle, performed the surgery. Sara went to all the pre-operative appointments with her sister Melissa, a huge source of strength for both of us. Dr. Doyle did an amazing job answering questions and explaining how VNS worked. The VNS is implanted as an outpatient surgery. It is placed under the pectoral muscle, similar to where a pace maker is placed. The device has a lead wire of titanium steel that leaves the device and is wrapped around the patient’s vagus nerve. The device releases a small electrical charge every five minutes. This electric charges travels up the vagus nerve to the brain and helps the brain stay in rhythm, preventing seizures.

Sara has an aura to her seizures and can feel them coming on. Sara wears a bracelet with a strong magnet. She or one of her caretakers can place the magnet over the device for two seconds. This will activate the device. Once the device goes off, it can stop the seizure just as it occurs, or shorten an event that has already started. There are multiple setting options which be changed at the doctor’s office. Varying the setting can often help the patients gain better seizure control.

I have seen little recognition in our community about this device. I know three young adults, like Sara who have added this device for improved health. Cyberonics the company that makes the device reports there are over 30,000 Vagus Nerve Stimulators being used in this country now. We have spoken to local police, fireman and ambulance workers. None of them have heard about the device and would not know how to help someone who uses this therapy.  Let’s get some more awareness out there. For more information check them out on Facebook