Back in 2015, my husband and I wrestled with the decision to have a VNS placed for our son Owen to help with his seizure management. It was a decision that we didn’t make instantly. You can read about that process in this post. VNS Surgery Day. Now that Owen’s device has been in for five years, a recent visit to the neurologist revealed that his battery was very low. It was in the 8-12% range, which means it was time to replace it.
We knew he’d need to get this replaced every 5-7 years, so it wasn’t a huge shock. And honestly, since a move to Missouri is on the horizon for 2021, I was thankful that we found this out before then. Trying to find a new care team is hard enough without having a procedure that needs taken care of right away.
So, the neurologist referred us to the surgeon, and we waited to hear back. It was going to be placed by a specially trained ENT, instead of by the surgery team that initially placed it.
Thankfully, we didn’t have to wait too long. They called and were able to get him in the next week, pending a negative Covid test. As another answer to prayer, that test was negative and surgery was on.
VNS Battery Replacement Day
One downside of Owen getting older is that his surgeries are not always in the morning now. Our check in time wasn’t until 12:45 pm, which meant we had to keep Owen from eating all day prior to that. It was a definite challenge, but the Lord helped us all get through. Owen and I left before the rest of the family ate lunch, so he only had to deal with breakfast time. A favorite movie helped keep him distracted.
Once we arrived, the check-in process was fairly streamlined. Unfortunately, they ran into delays and Owen didn’t end up going back for surgery for several hours. We snuggled and watched cartoons on the hospital TV to pass the time.
When surgery time got closer, I was able to talk with the doctor. I was thankful to hear that the only incision they were planning to make was in his chest. This meant he wouldn’t have stitches on his neck again. After the initial placement surgery, keeping his hands away from those was a challenge. We resorted to turtleneck sweaters and no-nos on his arms. However, if there was a need, the surgeon let me know that they might have to reopen the neck to access the nerve.
Prior to surgery, I also met with a team member from the VNS company, and the anesthesiologist. They did a great job of answering all of my questions, since Owen’s device was getting an upgrade in addition to a new battery.
Once Owen went back, surgery itself went very smoothly. So did recovery. And soon, we were loading up the car to go home.
VNS Battery Replacement Recovery
Owen received a dose of antibiotics via IV during the surgery to help prevent infections. When we came home, the only medication required were for pain management, and we alternated Tylenol and Ibuprofen. He has a fairly high pain tolerance anyways, and was quickly off of his meds, except at night.
Otherwise, he couldn’t bathe until the stitches dissolved, but he could take showers. Keeping his hands off of the stitches took a bit of special clothing techniques (hello footie pajamas worn backwards!) But now we’re a couple of weeks post surgery, and all is well.
Unlike his initial surgery, they were able to turn the VNS on right away. This means we don’t have to travel to Spokane to get to the neurologist several times over the next month or so. That is a definite blessing since we live so far out of town. They kept the settings the same, and we go for a follow up in a couple of months.
All in all, especially compared to the initial placement, this VNS battery replacement surgery was pretty low-key.
Is the VNS Helping Owen’s Seizures?
Since publishing my original post on Owen’s VNS surgery, a few readers have reached out and asked if it’s helped. It’s a hard question to answer, since Owen’s seizures are very complicated. He’s currently taking three different seizure medications, and has the VNS on a fairly high setting.
However, when the neurologist and I talked about it (since if it wasn’t helping there’d be no point in doing another surgery to replace the battery), I didn’t want to risk letting it go dead. You see, I do think the VNS is helping. It just didn’t have the complete success we were hoping for.
But, overall, Owen has fewer seizures now. And when he does have them, they’re much shorter and easier to manage. He hasn’t needed a dose of rescue Diazepam in years. So, I’d say yes the VNS plays a part in Owen’s seizure management. It is not the only part, but it does help.
After his initial surgery, we did notice his vocalizations stopped for a while. I think the initial sensation was kind of crazy. However, he is once again making noises, so it didn’t have a permanent impact, for which we are thankful.
Owen’s Upgraded VNS
As mentioned above, Owen’s VNS model was upgraded to the latest model during surgery. Now, it automatically triggers if Owen’s heart rate increases too much, as this can be a common occurrence with seizures. It also still has magnets, so we can swipe it to activate it manually if necessary.
I haven’t noticed anything going on with it since we got back home. One thing the doctor mentioned was that since his battery was so low, the sensation might be higher now that he has a new battery and an upgrade. He likened it to a flashlight with low batteries – the light is dim. So then when you put new ones in, it’s very bright again. But, so far Owen has adjusted well.
And the good news is that this battery should last for another 5-7 years, so it will be a while before he needs another surgery for this. And that, is a good thing.