Let’s Talk About the Gastric Neurostimulator: Part I
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11 Responses to “Let’s Talk About the Gastric Neurostimulator: Part I”
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I too have a gastric pacemaker…I’ve now had it for a bit
more than 2years. It has made a huge difference in my life too. I
am open to any suggestions you may have re nausea – just when I
think I’m okay it starts again.I do not know anyone else with this
problem or this implant.
Hi,
I have three major worries about the neurostimulator.
One is that I might not be able to have kids once I have it implanted. I’m only 29 and I’ve always planned to have a couple of kids and it breaks my heart to think that it might not happen.
The second worry is the recovery from the surgery. I hear a lot of people complaining about having a lot of pain after the surgery and it seems that it does take quite a bit to recover.
The third is the battery problem. If the battery runs out every 5 years (average), than how many surgeries will I have to endure in my life time? Surelly it cannot be good for one’s body…
I think it’s a big life changing decision that cannot be taken lightly and is not right for everyone. It must be carefully considered and one must understand all the aspects of it before making a decision.
Crystal, thanks a lot for your videos! They answered many of my questions!
Hi, Luci! Thanks for much for sharing your thoughts. I think a lot of people probably have the same concerns. You’re right — it’s a big decision, one that each person has to make for themselves taking into account all kinds of factors. I can speak to your concerns based on my own experience.
Regarding having children, that’s a concern I have as well and something I talked with my docs about prior to surgery. I’m also 29 and my husband and I would like to start a family fairly soon. Special precautions would certainly have to be taken and I would have the device turned off for the duration of the pregnancy, but nobody has told me that I definitely cannot have a baby with the device implanted.
In terms of recovery, yes it is definitely painful. But for me, the pain/discomfort I had for a few after the surgery was worth the decreased symptoms I’ve had in the year since. Of course, I can’t say that everyone feels that way!
Lastly, the battery replacement. I think it depends on how you look at the treatment. From the get-go, I’ve thought about this as a “bridge” of sorts, to get me through the next 5 or 10 years until a major breakthrough is made in the understanding/treatment of motility disorders. I don’t think I’ll have it for the next 60 years of my life…in that case, yes, a dozen surgeries to replace the batteries doesn’t sound good! But I’m confident that even better things are coming in the relatively near future. So for me, it was a matter of considering what I could do in the present moment to keep myself as healthy, nourished, and happy as possible. This was a better option in my mind than a feeding tube. I know some feel differently and think a feeding tube is less extreme. It’s all a matter of personal comfort.
So, like you said, lots to think about for anyone who is considering it!
Warmly,
Crystal
Hi Crystal,
Thanks so much for your reply, it gave me a glimpse of hope. I have been feeling very depressed and scared, it’s really good to hear positive things from you
Hi Crystal,
I want to share the two part video of Let’s Talk About the Gastric Neurostimulator with family members so they will be as informed as I. I was hoping to give them the link to your blog but for some reason, the video to Part I does not show up on here. Part II is fine, but for some reason Part I is not showing up anymore.
Debbie
Hi, Debbie. Thanks for letting me know! I don’t know where it went… I’ve reposted it, but here’s the link to the Part I video on YouTube just in case: http://www.youtube.com/watch?v=j6U4RajjVn4
You’re welcome, Crystal. Thanks for reposting here.
Hi Crystal,
I had my neurostimulator implanted in January this year. It has been three months now and it has worked better than I imagined. I must be one of the ones its worked really well for. I can eat small meals, but proper food. I have to be careful with carbs, fruit and spicy food as they cause severe pain, but otherwise I can eat anything. My motility is mostly like clockwork and has improved dramatically. I get no pain and only occasional nausea. I can feel the impulses from the device most days and they are actually a real comfort that my device is working. My biggest concern is pregnancy, my surgeon before and after surgery didn’t seem to thing there would be a problem and my general practitioner said when you first know you are pregnant we will refer you to an obstetrician and they will monitor you. I’m concerned if I have to have the device turned off as I will mot be able to work during pregnancy, I wish they would give me more information. Thanx for your blog it was really helpful and I could relate to it in many ways. Good luck to everyone and if you hear anything else about preganancy I would appreciate it. caz
Hi, Caroline. Check out this post from last week: http://livingwithgastroparesis.com/seven-years-later-still-learning/
I talked with my doc about pregnancy and the neurostimulator. I was very comforted by our conversation.
Warmly,
Crystal
Does anyone get a feeling of fullness after eating hardly anything? I just don’t have an appetite and am losing weight. Does the pacemaker help that symptom?
Faith, early fullness is one of the most common symptoms of gastroparesis. The neurostimulator primarily controls nausea and vomiting. Following a GP-friendly diet can help quite a bit with the fullness.