04/18/2026
Update on C**ty… this pic was taken while we were waiting to be discharged. We made it back to Des Moines this afternoon. C**t has needed medicine for pain in his neck and chest, but other than that he continues to do well. Thank you for all of the love and prayers for C this week. I’ve seen lots of the same questions in the comments of my posts, so wanted to answer a few of the most common questions I’ve seen…
1. Why did we have to remove his VNS device?
Multiple reasons… He received his first VNS device 8ish years ago, it never worked to help with his seizures… after a couple of years, we upgraded to a newer “better” VNS implant, that one also never helped. With the VNS, his home hospital in Des Moines is not comfortable doing MRI’s, so he has to go two hours away to Iowa City if he needs one. This isn’t a big deal if it’s a scheduled MRI, but with all of his neurological issues, there have been times when he needed an MRI quickly (most recently to rule out a stroke.) It takes time to have him transported by ambulance to Iowa City, which greatly delays the results of the MRI. Also, he actually hasn’t had the VNS turned on for the last two years.
Another reason for removing the VNS, is he will likely be having another brain surgery (for my Epilepsy peeps, DBS surgery.) His neurosurgeon wanted the VNS removed and completely healed before receiving a DBS in the future.
2. Why did he have the wire removed from his neck?
You can have just the device removed from the chest, and leave the wire in there forever, but C**t’s doctor wanted to try and remove the wire to make it easier for when he has DBS surgery. I’m still learning, but my understanding is that there will be another wire going up his neck, but instead of attaching to the vagus nerve, it will go to his brain. He did not want two wires going up C**t’s neck. In many cases, the wires are left alone, because trying to remove the wire is a risky surgery. He was able to get a big portion of the wire removed, there is a small portion that he said is calcified and stuck in scar tissue. He felt the risk was too high to try and remove it, as it would likely cause damage to his vagus nerve.
3. What was the VNS for?
My quick AI explanation of the VNS, also info on the DBS (DBS will be the next brain surgery)
VNS (Vagus Nerve Stimulation) device is an implanted, pacemaker-like generator placed under the skin in the chest that sends regular, mild electrical pulses to the brain via the vagus nerve in the neck. Primarily used to treat drug-resistant epilepsy, it also manages treatment-resistant depression and aids stroke rehabilitation.
DBS (Deep Brain Stimulation) device is a surgically implanted medical system, often described as a "pacemaker for the brain". It uses mild electrical pulses to regulate abnormal brain activity and manage symptoms of neurological conditions, particularly movement disorders Common uses include Parkinson's disease, essential tremor, dystonia, epilepsy, and OCD
