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4 minute read
This blog reflects my personal experience and understanding of VNS Therapy™. For medical advice, please consult with your healthcare provider.
It’s been a while, and so much has happened−let me catch you up!
It turns out life does go on after 40. I had a beautiful birthday spent with my family up in the mountains.
As for my re-implant surgery, I was a bit anxious in the months leading up to it−lots of questions ran through my mind:
- What will the new device feel like?
- What kind of day/night settings will I use?
- Will my scars stay the same?
- Will they replace just the battery, or will they need to replace the lead?
The day before my surgery, I followed all the pre-surgery instructions carefully, including eating and drinking exactly as directed. On the morning of surgery, I didn’t eat per instructions, which made waiting for my 12 pm appointment feel extra long (first-world problems, right?). My husband drove me to the hospital, and before I knew it, I was in a hospital gown underneath what they called a “space blanket.” I’m not sure if these are everywhere yet, but how very cool—it was a silver blanket filled with hot air from a machine humming nearby.
I met several wonderful nurses, and the anesthesiologist introduced himself and asked some routine questions. Have I had troubles with anesthesia before? No. Do I have any issues with acid reflux? No. After he left, a representative with VNS Therapy™ stopped by to talk through what to expect and gave me new device cards for my wallet and a new magnet.
About an hour and a half after arriving, it was time. I kissed my husband goodbye, and they wheeled me into the operating room. I was moved to the operating table, the mask went on, and I drifted off to sleep.
I awoke in the recovery room, to a nurse telling me things went well. My throat was sore—similar to my prior experiences—which I understood was likely from the breathing tube used during surgery. The nurse gave me pain meds and ice chips, and then later crackers and juice. Awhile later, they moved me to a recovery room, and my husband was again allowed to join me. Before long, they were helping me into the car and we headed home.
I felt elated knowing that the procedure was over and had gone smoothly. My husband asked what I wanted to eat, and a fast-food burger sounded delicious (it was!). We arrived home and I got into bed and fell asleep. The next thing I knew, it was the middle of the night, and I had terrible heartburn and acid reflux. Turns out the burger wasn’t a great choice right after surgery—oops, lesson learned.
As instructed, I stayed ahead of the pain by following the medication schedule provided by the doctor. Within a couple of days, I was able to switch from the prescribed pain medication to a combination of over-the-counter options (per directions). My surgery was on a Wednesday, and I had taken the rest of the week off. While I may have been able to return to work once I got off the heavy pain meds, I was grateful for the chance to rest and recover. I spent Thursday and Friday between napping and mindlessly watching TV.
I had a business trip scheduled for Sunday, and I felt well enough to fly across the country and spend days away from the comforts of home. Of course, recovery experiences can vary, and some people may need several days before resuming regular activities.
My surgical site healed well, and I have since had a follow-up appointment with my neurologist. I told her how excited I was to try out the Day/Night Programming settings, where a physician can program the device to different settings for two time periods within a 24‑hour day to better match lifestyle needs and manage side effects. I told my doctor I hoped to have the device off during choir performances for peace of mind (not because I can’t sing with stimulation active, but to avoid voice changes), so I suggested turning off stimulation from 3pm-9pm.
Looking back now, that was a big ask. Thankfully, my doctor is incredibly kind and patient, and she reminded me that VNS Therapy™ is used as an adjunctive treatment alongside antiseizure medications (ASMs) and part of my ongoing treatment, and each stimulation is like delivering therapy on a schedule. My doctor helped me realize that there is no way I would want to cut out a quarter (six hours a day) of my therapy!
We agreed on a compromise we were both comfortable with; between the hours of 3 pm and 9 pm, my device will run at half strength. This way, I continue receiving therapy while reducing stimulation intensity to manage potential side effects. We did not change the AutoStim settings (the extra impulse the device gives when a rapid change in heart rate is detected, which may be associated with seizures). I left my doctor’s office feeling heard and I respected her for caring so much about my health. I will test out these settings for a while and will have another follow-up appointment soon to reevaluate.
Every surgery carries risks, like infection or complications, and recovery can look different for everyone. My procedure lasted about 1–2 hours, and while I was up and moving within a few days, some people may need more time. Stimulation can also cause side effects such as hoarseness or coughing—I’ve had mild hoarseness, but it’s been manageable.
If you’re considering a replacement, know that it’s normal to feel nervous. Ask questions about battery life, incision sites, and what happens if the lead needs replacing. Talk to your doctor about options like Day/Night Programming to tailor therapy to your lifestyle. Finding a care team that listens makes all the difference.
Do your research, advocate for what works best for you, and lean on your healthcare provider for guidance. Feeling informed and supported can make this process not just manageable but empowering.
As for my surgery-related concerns, the new device feels the same as the previous one, and the scar appears roughly the same so far. It’s still too early to tell officially, but I’ve always said a scar tells a story. My VNS Therapy™ device is a huge part of my story, because it allows me to live better with epilepsy. That’s a story I don’t mind sharing with a scar!
