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

  • Kirby says...

    It is hard to say if the pacer helped with the pain. I have many different types of pain and am currently partially NPO. I do know it has helped tremendously with nausea. My doctor is hopeful that once I reach a more healthy weight that things will change and maybe the pacer will kick-start my stomach into working better. But that is all just theory. Pain is difficult because the things we take to help with the pain slow our digestive systems down. A lose-lose situation in my opinion. If your doctor feels that it is worth a shot then I’d take it. But that’s me. I can’t leave an option not taken. I’ll do anything to feel better.

  • Katie says...

    Thank you so much for this info and all of the info and inspiration on your site! I’ve been diagnosed with diabetic GP for a few months now, though had symptoms for longer, and no meds have worked so far. I’m going for a consult for a pacemaker at Temple in Philly in a few months. My main symptoms are nausea and vomiting. So great this took care of the nausea for you!

  • Kerri says...

    Thank you SOOOO much for your story. My mom was on reglan for ten years then it caused severe side affects. She has been off of it for over a year now and her gp has gotten extremely severe. She is type 1 diabetic so her blood sugar is also absolutely out of control. We just put in for the gastric stimulator to insurance…..PRAYING they approve quickly. It’s hard watching her weak and malnourished all the time. I will share this story with her, I’m sure it will help. Thanks again!

  • Kirby says...

    I pray it works well for her as it did for me. It probably won’t control all the nausea but I wouldn’t take it out for the world. I was on Reglan too, but after 2 or 3 days of being miserable, I stopped it. I’m glad this site could be of some help. If you have any questions, don’t hesitate to ask! I may not know everything, but I’ll try!

  • Sheryl says...

    Thank you for sharing your story. I have been living with GP almost 3 years now, and along with that i have sudden spurts of Pancreatic inflammation. My nausea has gotten extremely bad within the last month and no medication will work. It has been suggested to be a while back about getting the implant but im afraid of another surgery. But i cant go on living with this feeling. I will keep you in my prayers and everyone else that has to live with this. God Bless

  • Sue DeMaria says...

    You mentioned age. I’m 72 and have had severe nausea and vomiting from GP for 8 months now. Have had 2 Botox procedures…(the second working for only 18 days). Zofran doesn’t help… My doctor has referred me to UCDavis for a consult on a neurostimulator…but understand it will take quite a while to get an appt. Any info on age and how it affects the surgery? I’m in excellent health other than the GP. Thanks for any help you can provide! So glad the surgery has done so much for you!!

  • Sherri says...

    Thank you for all of the helpful information. I’ve forwarded links to my family & friends to help them understand. I’ve had a lot of same experiences as you. I was diagnosed with GP in November 2007. I had a J-tube placed in February 2008 and kept it until January 2009. I had a gastric stimulator placed in July 2008 and still have it today. My settings are very high like you and the battery lasts about two years. I’ve had it replaced a couple of times and am getting ready for that again as it is dead now. I also had the j-tube put back in a couple of months ago. The pain is almost unbearable with the j-tube this time around. It’s a nerve-type of pain and the surgeons have replaced the tube twice since putting it back in. I’m going in for replacement #3 of the j-tube and may have to do the G-J tube this time to try & eliminate the majority of the pain. Also I started vomiting up the tube feeds which has created a new set of problems. AND a couple of years ago I became septic when my power port became infected. My fever was higher than I thought anyone would be able to live through, but I was in the hospital when it happened. Otherwise, I wouldn’t be here or would be in a vegetative state. If anyone ever said GP is not a painful condition, they are sorely mistaken. Thanks again for your blogs and the pics.

  • susan bryant says...

    I had my simulator put in December 11,2013. It’s been almost four months. It’s the best decision I’ve ever made. I had lapriscopic surgery and was back to my normal routine in little over a week. I still have delayed emptying but my nausea is a million times better.

  • amanda ripsam says...

    Thank you I was just diagonsed two days ago and I have multiple gallstones and hitial hernia. I am also a blogger I started my blog do to my health issues.
    It’s nice to meet another person with the same disorder

  • Rochelle says...

    I’m 27 and was diagnosed with gastroparesis 2 years ago. I get reflux a lot, which gives me chest pain, sometimes I have to stop breathing or talking because of it. I know it sounds weird but I sometimes feel my stomach pressing into my ribs and it is quite uncomfortable as well. I am starting to feel nauseas on the odd occasion. I have had two Botox injections, one lasted for 8 months and the second around 4-5 months. Motilium gives me every side effect so I can’t take it and am currently on nexium 40mg. My doc is gettin me to have the gastric emptying test again and is going to refer me to another specialist. She said my only other option apart from Botox is the stomach pace. I’m really afraid that I’m not a candidate for this as I don’t vomit and I’m not nauseas all the time. I feel like I am at a dead end, back to square one. I know I’m not as bad as some but it still is very frustrating. Since having gastroparesis I’ve also become sensitive to certain preservatives and need to avoid them or I am sick for several days with intense stomach pain and need to take antihistamines to soften the blow. Thanks for the vent!! Thanks for your blog and support!!

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