New Gastric Pacemaker
I had been having trouble with my gastric neurostimulator for the past 3 months — both with worsening symptoms and abdominal twitching. After adjusting the settings multiple times, my doctor finally recommended exploratory surgery to look into the problem.
Thank goodness! Turns out the device was seriously malfunctioning.
When I went in for surgery on Tuesday, my surgeon opened me up and tested the device while it was still connected. He was able to see that it was shorting out every five seconds and causing consistent twitching of my abdominal muscles. They’re not sure what caused the device to malfunction, but it’s being sent back to the manufacturer for further testing.
So now I have a brand new device and should be back on track after the 6-8 week recovery period. I’d forgotten how difficult the first several days after the surgery are, but I followed my own advice and things have gone more smoothly this time. Now I’m just looking forward to reaping the benefits of a functioning neurostimulator!
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17 Responses to “New Gastric Pacemaker”
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I wish you lots of luck with your neurotransmitter and your recovery. I hope you feel better real soon. Take care of yourself!! Will be praying for your recovery.
i really,really hope it works out this time the best of luck!!!!
hope you feel better soon.
I hope everything goes well. Would one of you please give me the a-z on the pacemaker? Like pre-surgery prep length of surgery, length of hospital stay,most important advise you can give me and how to help family members help me? Thanks in advance,Jeni
Hi Jeni,
Thanks! Are you getting the gastric neurostimulator soon?
Some things, like pre-op appointments, preparation, the hospital stay, etc. will depend on your surgeon’s procedures and your specific case. The first time I had the surgery, I left the hospital the same day. This time I stayed over night and was released the next morning. I’d say that staying for a night was very helpful and I would recommend that if it’s an option for you. I’ve heard that other people have stayed in the hospital for 2-3 days, so again, it depends on your situation.
For both surgeries, I met with my surgeon and my GI doc the day before the procedure. The first time, I also met with the Enterra representative that day (the representative will be in the OR when your device is placed to ensure that it’s inserted and working properly). In my experience, there isn’t much preparation for the surgery itself, other than not eating after a certain time the evening before.
The recovery period is about 6-8 weeks, but you’ll probably feel significantly better after the first 2 weeks during which your abdomen will probably be pretty swollen and it will be difficult to move around too much. You have to be careful not to lift, bend, or reach for a few weeks so as not to displace the leads. You’ll likely need help doing daily tasks for a week or so — things like getting dressed, etc.
For some additional details and advice, you can check out this post that I wrote after my first surgery.
Hope this helps! Let me know if you have any additional questions.
Best,
Crystal
Hey, it’s great they found out it was defective, though crappy you had to go through the surgery again. Pacemaker 2.0 will hopefully be better
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Hello,
I just had the pacer put in 2 weeks ago. I still feel really nauseas but otherwise am good. How long did it take for the nausea to go away. I didn’t have much before the surgery because of the liquid diet. I am trying to be patient and wait for it to kick in but am feeling a bit frustrated. They already have turned mine up to 10. I love your blog. Thanks so much for keeping it going!!! Ellen
Hi. I just had the Interra Gastric Pacemaker placed Sept 3 for gastroparesis . It’s been three weeks and I still am so swollen in the abdominal area where the device is located. My insides feel so tender almost “raw” all the time. The incision itself is fine and healing perfectly. I have been sick a few times and am convinced that meat is no longer an option for me as I get the same gastroparesis symptoms when I try and eat any meat at all. Just curious if you or anyone has experienced some of the same recovery symptoms. I am soo grateful you have a website and that I feel like Im not alone. Im 41 years old and the gastroparesis hit me xmas day 2008. No hx of diabetes, gi doc says virus caused gp. Please let me know how everyone else feels and if they feel like me. Take care and Ide love to hear an update on how you’re dong.
Hi, Tamara. I really don’t think that the doctors are properly preparing people for what they will experience after this surgery. For me and everyone else I’ve talked to, the pain and swelling took quite a while to subside — and most of us were worried that something was wrong in the meantime. After 2-3 weeks, I was able to start doing daily tasks again like dressing myself, showering, etc. But it was sore for and swollen for a few weeks after that. I’d say after about 6 weeks, everything was pretty much back to normal. The first surgery was more painful, the second one had more swelling (it literally looked like I swallowed a soft ball; maybe I’ll post pics). I think everyone responds a little bit differently. If you’re concerned, it’s always best to contact your surgeon.
I’ll post an updated about my experience with the device later on today.
Hope that helps!
Crystal
P.S. Regarding meat, depending on what kind you’re eating, it can be extremely hard to digest. Once you’re feeling good again, you could considering trying digestive enzymes to see if they help you break down the protein.
[...] had my second Enterra device for a little over eight months now. The last time I posted an update, I said: Both the frequency [...]
Hi Crystal. I just wanted to ask you how you’re doing with your device and get your input on a couple things. I m about 6 1/2 wks post implant. I had my pacer turned up 1 volt about 2 wks ago and seem to be doing okay. I really have to watch what I eat and how much I eat, if I eat too much or attempt meat I vomit, but otherwise, doing pretty well. This is kinda weird, but my allergies have been horrible and I’m sneezing so much that I think I’m actually making my pacemaker area hurt! Has this ever happened to you? I can’t sit too well for any period of time due to the placement of the device and can’t lean over and pick things up. Are you having any of these issues? I hope everyone that’s reading this that has GP and has or has not gotten the device are getting some relief somehow. Happy Halloween to all and I look forward to hearing from you when you can reply, Crystal. Thanks.
Hi, Tamara! I’m trying to think back. I think it was probably 2 months before I was fully recovered and didn’t have any pain or discomfort from coughing, sneezing, etc. It’s been almost 9 months now and I don’t have much trouble with bending, lifting, etc. Sadly, if I try to jog or do yoga, it gets sore. Also if I wear pants with a tight or high waistband or anything with a belt.
Since having the device implanted, I have a lot more leeway in terms of WHAT I eat but definitely not HOW MUCH I eat. I have to watch portions even more closely now since I don’t become as symptomatic from higher-fat or higher-fiber foods. If I overeat, I’m horribly sick. The good news is I can always sleep through the night now, even if I’ve overeaten — that’s *huge* for me as my symptoms used to always disrupt my sleep.
Good luck, Tamara. Please continue to keep us updated!
Warmly,
Crystal
Has anyone ever experienced increased gp symptoms after an adjustment on their stimulator? If so, did it get better after device was adjusted again? I was “ok” immediately after setting change, but feeling pretty miserable last 3 weeks (nausea and vomiting after meals, even after taking in some liquids). I know there are several different settings available, just wondering if anyone else had a bad “setting” that didn’t suit them and made them worse……thanks for listening Tamara
Hi, Tamara. Yes, this has definitely happened to me (in fact, I’m having a similar experience right now). Putting things back to the previous setting got things back on track for me in the past. It’s interesting because sometimes it seems like it’s not helping “enough” and I want it to help more, but then when I change to a setting that’s worse, I realize just how much it *was* helping! If that makes any sense…
One other thing to consider, I’ve noticed that as my symptoms decrease due to the stimulator, the quantity and/or fat/fiber content of what I’m eating tends to increase a little bit. Over a few weeks, this can add up and cause a flare-up if I’m not paying close attention.
Hope that helps!
Warmly,
Crystal
[...] neurostimulator — This was on my list last year, even though it was broken at the time. I had the device replaced on January 19, 2010 and I can honestly say that it has changed my life. I have gained about 10 [...]
Hi. I was diagnosed with gp last June. Had symptoms for almost a year. I don’t tend to get nausea or vomiting. However, I get excrutiating pain. Domperidone stopped working. I’m on erythromycin now, but doesn’t seem to be doing much. I’ve just had a botox injection. So far its not helping and its been a week. This is miserable, and affecting my life. Have you had similar experience? I think the next step is the pacemaker, but my doctor hasn’t mentioned it much. Is there anything you can tell me about it?
Hi, Ashley. Sorry to hear that you’re struggling with gastroparesis. How are you doing with diet/nutrition? That’s an important piece of the puzzle, especially if the medication isn’t really helping. If you’re interested in learning more about the gastric neurostimulator, I’d recommend checking out Enterra’s website. There is a listing of doctors who offer the device. (http://www.medtronic.com/your-health/gastroparesis/device/what-is-it/index.htm)
If you’d like more guidance, feel free to email me at crystal at livingwithgastroparesis.com.
Warmly,
Crystal
Hi, I am 20 and I was diagnosed with gastroparesis this past summer but I’ve had it for 4 almost 5 years. I’ve been on 4 different types of medications and none of them seemed to work. It is extremely frustrating and it has greatly affected my life. I go to school 40 hrs a week and it is very hard to go when I feel so horrible. My grades are slipping and the only thing I can seem to eat is cereal so my nutrition isn’t the best. Exercising has become harder to do and I just can’t go a day without feeling horrible. I have been to 3 different gasroenterologists and the newest doctor I go and see in April to talk about putting the neurotransmitter in. I am nervous about having the surgery and being able to stay in school. I am going to school for radiology and have school for 2 years straight through the summers so I don’t have much time for recovering . I was wondering if those who have had it done think that I will be able to still be in school and be able to function. I am at the hospital 3 days a week working with patients. What do you guys think?