Three weeks ago we finally made it to Denver for Daniel’s VNS surgery. We have been trying to get this done for months now. He was either sick or had been exposed to Covid the three previous times we tried to get it done.
You may be wondering what exactly is a VNS? VNS stands for Vagus Nerve Simulator. The VNS consists of two parts; a generator and a wire lead. The generator is a small battery powered box that is very similar to a pacemaker. it is approximately 1 1/2″ long, 1″ wide and 1/4″ long. A incision is make in the left chest above the nipple and a “pocket” is created under the skin to hold the generator.
The lead is a 18-24″ long wire that plugs into the generator. It has a coil of wire on one end similar to a corkscrew. An incision is made in the neck and then the lead is fished up to the incision in the neck. The corkscrew is wrapped around the Vagus nerve in the neck.
The thought behind the VNS is to disrupt the electrical signals in the brain in an attempt to teach it to “forget” how to seize. It works by sending a small electrical pulse from the generator to the Vagus nerve. Initially it sends a 0.25 mA shock to there nerve every five minutes for a total of 30 seconds each time. By the end of April it will be at full strength which is 1.5 mA shock every five minutes for the 30 second duration.
There are two more functions of the VNS. Starting with the first ramp up, it will sense Daniel’s heart rate. When his heart rate takes a sudden jump, the box will sense that and send an additional shock to the Vagus nerve to counteract what it perceives as seizure activity. It also comes with a magnet that can activate the generator. When he has a seizure, we are able to swipe the magnet across the box and send pulse to the verve that acts as a rescue med.
Three weeks in we are hopeful. He had a seizure Thursday night. When I swiped the magnet, the seizure immediately stopped. Normally it takes a little time for a seizure to end. They normally look like a hill, with a peak in strength and then slowing to a stop. This went form full seizure to nothing withing seconds of swiping the box.
For us, this brings a lot of hope, hope we have not had in years. The medicines are working very well to control the seizures. Perhaps this will be the thing that brings them to a stop, or at least minimizes the frequency to a manageable state.
Life With Super D! 