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This blog reflects my personal experience and understanding of VNS Therapy™. For medical advice, please consult with your healthcare provider.
Hello! My name is Anna Smith, and I would like to take you on a journey with me. Let’s go back in time. It’s 2001, and I am a sophomore in high school. I’ve dropped out of an accelerated academic program because my life has been uprooted by seizures. They started when I was in middle school, out of the blue. I’ve tried four different medications, but they all caused a combination of intolerable side effects (including but not limited to: full-body rashes, severe depression, anger, memory issues, and weight loss). I’m missing a lot of school, spending a lot of time at the doctor’s office or recovering from seizures, and to top it off, my friendships are suffering as a result. I am at a very low point in life, and I find out later that my parents are thinking that graduating from high school might not be in the cards for me.
That year, we learned about a new option for people like me who have drug-resistant epilepsy: VNS Therapy™. We read about it in the local newspaper and attended a presentation nearby. At the time, we learned that VNS Therapy™ was an add-on treatment designed for people with drug-resistant epilepsy with partial onset seizures, and were told only about 5,000 people had been implanted with one (compared to over 174,000 today!) Since then, the age indication for VNS Therapy™ has widened, and is approved for patients as young as 4 years old. I felt uncertain because of how new it was, but nothing felt more daunting than continuing on the path I was on. My neurologist thought I was a great candidate, and I was implanted with my first VNS Therapy™ device just days before the start of my junior year of high school.
VNS Therapy™ helped me gain better control over my seizures, and I was able to get my life back on track. I not only graduated high school but got to experience college and graduate with a BS in mathematics education. My personal experience with VNS Therapy™ is that it helps me have fewer seizures, and when I do have them, they’re shorter and my recovery time is much better. While I’ve experienced some mild side effects like hoarseness and throat sensations during stimulation, they’ve been manageable.
Flash forward to present day: fall of 2025. I live in northern Colorado with my husband and two dogs, and I’m about to turn - dare I say it — the big 4-0. I’ve spent the past three years in the tech industry, was recently promoted, and now manage a technical support team for a great company that provides cloud-based software to first responders. Life is GOOD.
I am anxiously awaiting the news that I am in need of a new VNS Therapy™ device. I know I’ll be due for a new one soon because the past few times the doctor has checked my battery life, she tells me I am getting closer to the 11-25% range. At every appointment they check my battery life, and since I have been in the 25-50% range for a while now, I know I will soon dip below the 25% and they will start thinking about battery replacement. I’ve had this VNS Therapy™ device for eight years and battery life typically ranges from 1 to 10 years based on the user settings, so I am not surprised to be nearing a replacement.
I also happen to know that the latest model has some perks I’d like to take advantage of, so I am excited about getting a new VNS Therapy™ device. Specifically, I am very interested in Day/Night Programming where my doctor can program the device to different settings for any two periods of time during a 24-hour period to better match my lifestyle and manage side effects. I have nocturnal epilepsy and only have seizures when I’m sleeping, so this is an option for me.
Because my seizures are well under control with VNS Therapy™, I tend to see my neurologist only once a year. However, it’s important to follow the recommendation to schedule visits at least once every six months to ensure everything is working as it should. As my battery has gotten lower and lower, I started seeing my neurologist every six months so that we could keep better tabs on my battery life. After visiting with her over the summer for a routine checkup, she recommended getting a replacement due to my decreasing battery life and referred me to an ENT (Ear, Nose and Throat) Specialist in town who has been doing VNS Therapy™ implants for over a decade.
I met with the ENT and talked about the surgery. He said we could choose to wait longer, and let my battery get even lower, but I know that battery life doesn’t follow a completely linear trend. The last couple of breakthrough seizures I’ve had have been really rough and I know the fewer seizures I have the better off I am. I also know that VNS Therapy™ has been a life-changer for me, and I want to keep a good thing going.
One thing the ENT mentioned was the possibility of having to replace the implanted lead that connects the device to the nerve. A typical surgery after the initial implant only requires a battery change. For that, they go in through the previous incision in the chest, and the procedure to replace the device’s battery typically takes about 1-2 hours. This is the plan, but my ENT tells me that when they plug in the new battery, they also run a test through the wire. He warns me that if that test fails for some reason, they could potentially have to replace the wire as well.
This is not news to me, as I have had my wire (and battery) replaced before. They end up having to make another incision in the neck, to get the new wire wrapped around the vagus nerve. His job is to tell me all the possibilities of what could happen to ensure I’m fully informed of all possible outcomes.
My husband and I left his office with a lot to talk about. We decided the pros outweigh the risks, and that we don’t want to wait too long for fear of battery life. Within a few weeks, I called the doctor back to get my surgery scheduled. I am now officially scheduled for surgery later this year.
As I prepare for surgery, I feel a healthy combination of both gratitude and excitement. This device has been a life-changer for me, and I’m hopeful that the new features will make my life even better, especially with the flexibility to tailor stimulation to my lifestyle.
I will forever be thankful that my family saw that ad in the newspaper to attend a presentation on VNS Therapy™. We had thought we were out of choices! If you’re living with drug-resistant epilepsy, I encourage you to talk to your neurologist about your options. Ask questions, explore resources, and don’t be afraid to advocate for what works best for you. Don’t let epilepsy keep you from living your best life.
