My doctor felt that with my age and progression of the disease, I was an excellent candidate for a Gastric Neurostimulator (pacemaker for your stomach). The pacemaker is still very new and only recently approved for use. Each individual patient will react differently to the pacemaker. Some will feel relief right away while others take years to find out if it worked. Only a few doctors and surgeons are qualified to even suggest the operation, so make sure the doctor or surgeon performing your procedure is one of them!
For those that don’t know exactly how a pacemaker works, I’ll attempt to do a quick explanation. The pacemaker consists of electrical leads connected to a battery. The leads are surgically connected to the muscle wall of your stomach. The battery is placed in a pocket under the skin and off to the right of your naval. The electrical leads act as a nerve and when it electrically pulses, the muscles in the stomach contract. It isn’t a very strong pulse and if it is placed right during the procedure, you shouldn’t really ever feel it. This constant pulsing also confuses the nerves to the brain and reduces the sensation of nausea. The rate at which the device pulses and the strength of the pulse are adjusted in a regular office by an external device. No pain involved while adjusting the stimulator. It might take several adjustments to get it right and for relief.
When I got insurance approval for my device, I was scheduled for surgery. My procedure was open and took approximately 2 hours to complete. I was given general anesthesia and remained in the hospital for 3 days, following the procedure. The pain was slightly more intense than my previous surgery a year prior (open abdominal myomectomy for the removal of a 10cm tumor). Due to the placement of the device and the incision made, swelling caused breathing issues. Once out of the hospital, though, I noticed an immediate difference in the frequency and intensity of my nausea. It had almost completely subsided. After 2 weeks of recovery, I felt well enough to be back out in the world.
Nausea almost gone, I was still plagued with a slow stomach. I still had issues eating and had problems keeping weight on without the aid of a NJ feeding tube. It has only been 3 months since surgery, so there is still hope it might repair my nerve and improve stomach function. For now though, I supplement nutrition with a feeding tube.
My nausea still seems to be under control with the aid of the neurostimulator and the occasional Zofran. I’ve had two adjustments and when I put on more weight, I’ll be due for another one. I’m afraid of what it would be like without it, and am happy to have it in (even if it hasn’t helped yet, with gastric emptying). Sometimes my physicians question whether it should stay in, because my frame is such that it sticks out quite a bit. The room between my hips and ribs is minimal, at best, so it also rubs up against my ribs when I sleep in certain positions. A very small price to pay for the nausea I believe it is helping stop. I also have the occasional muscle twitches from the stimulator. This happens if I haven’t fed for awhile and lose weight. It doesn’t hurt but is very annoying. It feels like an eye or arm muscle twitch but it is in the abdomen. All muscles from the battery to the stomach twitch so much that you can see it through my shirt. Entertaining, yes, but also uncomfortable. Doesn’t happen all the time, so it is something I can most definitely deal with.
My stimulator is now at the max settings. Any higher would give minimal results if any at all, and drain the battery. It still continues to help control my nausea. I can feel the stimulator going off several times during the day. It is similar to one of those external muscle stimulation machines for athletes or for those in rehabilitation programs. The muscles contract along the length of the wires from the device to the stomach in one motion for a period of time, then they release. It is most evident when I lay flat on my back. During a few ER trips, I learned that this electrical signal messes with the EKG machine. I won’t lie, I let them be confused for a LONG time as to why they were getting really weird results, before I reminded them I had a gastric neurostimulator implanted. That’s what they get for not looking at my chart! I experience no pain, however, with these pulses, so I live with it. I still take IV Zofran through my port up to 2 times a day. I still know that this number would be a whole lot higher had it not been for my stimulator. I’m thankful everyday to have it.