VNS Therapy is a Game Changer

My daughter, Vivien, started having seizures at the age of two. My wife and I were crushed. Our sweet child didn’t deserve to have Epilepsy. No one deserves to have Epilepsy.

It took many years for doctors to figure out that she had suffered a fetal stroke. Her brain did not fully form and she was having partial focal seizures. Most of her seizures happened in her sleep or coming out of her sleep. She had horrible insomnia. She was staying awake 3 to 5 times a week, crashing every other day. My wife and I took turns staying up with her praying for a cure.

We discussed brain surgery but another medical test determined that her seizures were coming from too many areas of her brain. Our neurologist suggested VNS therapy.

The Vagus Nerve Stimulator is a device that sends pulses to the brain through the Vagus nerve. We had never heard of VNS Therapy and our past doctors had never discussed it. My wife and I were surprised to learn that VNS Therapy had been around for the last 20 years.

We were scared but we knew that we had to do this for our daughter. She was rapidly deteriorating. Her seizures were getting worse. She was failing out of school. Her teachers didn’t care that she had Epilepsy. Her memory was horrible. She felt lonely and isolated. Most days she spent at home battling anxiety and depression. She was on so many different medications that she looked exhausted all the time.

We sat down and talked with Vivien about VNS Therapy. We wanted her to feel empowered going into the surgery. She was scared but excited about life without seizures.

The VNS Therapy procedure was about an hour and we were back home that afternoon. Vivien was dancing around the house eating ice cream that night. She had little side effects like a scratchy throat and a slight voice change. Vivien called it her “robot voice” and was sad when it went away.

After six months, Vivien had five seizures but they were controlled by the VNS Therapy magnet. We were able to wipe the magnet across her chest to activate the VNS Therapy device. Vivien’s recovery time after the seizures were quick. It used to take her weeks to recover from a seizure and now it was instant.

The magnet took some getting used to but was much better than the rescue medications we were used to carrying. I liked that the VNS was watching over her like a bodyguard. It was comforting to know that she had a pacemaker for her brain.

A year after surgery Vivien really progressed. She was able to wake up on her own, get dressed make breakfast, and get ready for school. Before she was so distracted that she needed help getting ready in the morning. Her life was improving and she was sleeping through the night. She was able to dream again and was excited about having a normal life.

Vivien is now almost 4 years seizure-free. I am not allowed to call VNS Therapy a miracle but it sure came close for us. I realize VNS Therapy isn’t a cure but it has been a game-changer for my child. She is now a happy teenager who thrives at school, has lots of friends, and talks about getting her driver’s license.

Author of Vivien’s Rain and Straight Fish. Epilepsy Advocate. Comedian.