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.

UPDATES (8/19/2010)

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.

UPDATES (7/14/2011)

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.

  • 24 Responses

  • Adam Logain says...

    Nice blog!

  • James Walter says...

    This is a great blog. Keep up all the good work.

  • Reid says...

    Hi, I must say you have an amazing website. I stumbled across it in Bing.

  • Tracey says...

    Hi I have been told I have to have this operation, a bit worried whether it will work.
    I have had radiotherapy in my neck and since had non stop complications with reflux, trouble swallowing and have been told my stomach is very slow at emptying. I have had 14 ops on my throat and feel like it is never ending…and now this. Is it painfailful and how long is recovery?

  • Junior Badura says...

    I enjoyed reading your blog ~ thanks for posting such awesome material.

  • Kirby says...

    Glad you enjoyed it – take care 🙂

  • Kirby says...

    Well, I had this operation open, not lapo like most – so I guess the pain couldn’t get any worse than what others experienced unless they had complications =) I had to stay in the hospital for 3 days following the procedure. The whole procedure took a total of 2 hours. It was done under general anesthesia and my doctors, surgeon and anesthesiology team were amazing. I came out of the operating room to the recovery room (spending about an hour there) with a morphine pump that I controlled. I had that for about a day and a half. The morphine caused some issues with my bladder in that it wouldn’t voluntarily empty so I had to give up my precious pump =( and go on oral or IV pain meds. Wasn’t a big deal. I didn’t even notice the difference as far as the level of pain I was in. I was up and walking the next day even with the urinary catheter in. The only issue I had was with breathing. The incision was between my ribs so when it swelled up, breathing deep became an issue because it hurt a bit, but not enough to need extra oxygen or extra days in the hospital. Nope, went home on time and was going up and down the stairs as soon as I made it home. Stayed in bed or the couch for a few days before I ventured back out into the world and to my normal life, still taking it easy but I didn’t miss out on any parties or movies or shopping =)

    As far as it working or not. It is pretty much a shot in the dark. Not everyone has access to the temporary pacemaker. I know I didn’t and really didn’t want to wait the 6 months it required on the waiting list. I know that it worked right away for my nausea and continues to. Nausea is the worst so I am happy that it takes care of that most of the time. I am still waiting for it to retrain my stomach. It may never do that but the trade off is fair. A little surgery for a life free of 24/7 nausea. It doesn’t hurt me anymore after the incision healed. It looks beautiful as no staples were used and the stitches were kept beneath the skin. I can sleep on it and everything. It is a bit sensitive if touched or punched by my Bernese Mountain Dog puppy but I recover quickly. Sometimes it shifts around so during routine check-ups I have him test it and it always tests normal.

    Good luck with your surgery and keep me updated on how it goes! For me it was worth it and I would NEVER let them take it out!

    ~ Kirby

  • Rachel says...

    Hey I am really glad that I found this blog my gp is really bad right now and I have been seriously considering the pacemaker but wasn’t sure if it would do anything, but even if it gets rid of only the nausea I will be soooo worth it… Can you give another update and maybe more details about what exactly has changed for you?

    Thanks so much
    Rachel

  • Kirby says...

    I went in with the same thoughts, “if only it would get ride of the nausea, I would take it in a second…” I was a fortunate one. I noticed an immediate decrease in nausea that only continued to get better within the next few days. I rarely reach for my bottle of zofran. Before I was taking 4 of those a day and going through bottle after bottle. Now, I haven’t refilled the last bottle, in I don’t know how long. I honestly think that nausea is one of the worst symptoms. I think people who go in thinking it will be the miracle device and have the instant results or that it will actually help with stomach function (faster emptying and higher tolerance of food once forbidden) will have a higher rate of failure. Everyone reacts differently to this device and it depends on how you got GP, I think too. Mine was idiopathic. They think it was brought on by a bad virus years ago or a possible result from a 10cm fibroid I had to have removed a few years back.

    I’m still relying much on tube feeding. My weight has stablized. I do not keep zofran as part of my daily medications. I’ve had it for a little over 7 months so hopefully with even more time we’ll see more results and more improvements with my stomach if we keep trying. We went into the surgery knowing that there is a small possibility that nothing would happen but even the smallest chance that something could take away even just my nausea without having to rely on pills was enough to go forward and hope for the best. It isn’t too complicated of a surgery and when all things heal, you are rarely limited in activities. At the moment we are trying to have a baby so even that option is open with a pacemaker.

    Where are you having the procedure done? Which doctor?

    Let me know if there is anything more I can do to help,
    Kirby

  • Ashley says...

    HI, Ive tried a few motility drugs, and have tried the botox injection. I was diagnosed last July with gp, but have had symptoms for almost a year. I was wondering how much pain you experienced before the pacemaker. I Dont tend to have nausea or vomiting, I get excruciating pain. I dont think we have any more options besides the pacemaker. I was wondering if the pacemaker helped with the pain at all? I keep hoping theres something to help, but it seems my options are just about gone. Hope youre still doing better.

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