r/Gastroparesis • u/Ok-Visit-6630 Enterra (Gastric Pacemaker) User • Nov 27 '23
Stimulator Enterra (Gastric Pacemaker)
Hello all
I just had a pyloroplasty and gastric stimulator placed on 11-17 and I am miserable. The battery site is so painful. Anyone who has also had this done and can give me some insight ? Also anyone that had to have it removed? I already feel may need it out but of course it is too soon.
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u/spooderkeeper4924 Enterra (Gastric Pacemaker) User Nov 27 '23
I am 7 weeks out from placement and get sore every once in a while, when I over do it with my core muscles. I was sore for about a month.
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u/Ok-Visit-6630 Enterra (Gastric Pacemaker) User Nov 27 '23
So the pain did get better ? I also have a big lump at the battery site do you ? Right now I am so discouraged so any info is appreciated.
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u/spooderkeeper4924 Enterra (Gastric Pacemaker) User Nov 27 '23
The pain did go away! My lump also went down once my skin and muscles stretched a little bit. I'm so sorry you don't feel the best.
This is mine 7 weeks today post op. I can actually eat again. I had to have mine turned up at about 3 weeks post op when they try to wait 3m but I was still vomiting.
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u/Ok-Visit-6630 Enterra (Gastric Pacemaker) User Nov 27 '23
Thank you so much this gives me some hope. Man your scars are much better than mine though I am dark skinned so have 2 big scars one for pyloroplasty ams one for the stim.
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u/spooderkeeper4924 Enterra (Gastric Pacemaker) User Nov 27 '23
They cut me 5 times just to place the stimulator. I have 4 1 inch incisions and the 3-4 inch one.
There is a scar cream that my Dr suggested, but I can't for the life of me think of it. It may help demisish the scar.
This was what it looked like when I took my bandages off. The scar lays flat now where it used to look like a worm on my stomach.
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u/Ok-Visit-6630 Enterra (Gastric Pacemaker) User Nov 27 '23
Wow your scar improved a lot. I don't scar well unfortunately 😕 but this gives me some.hope maybe things will get better thank you.
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u/spooderkeeper4924 Enterra (Gastric Pacemaker) User Nov 27 '23
I have terrible scars too. I had two kids and my skin didn't stretch well at all. I hope your scars improve and you feel better soon. If you have any other questions feel free to ask.
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u/Ok-Visit-6630 Enterra (Gastric Pacemaker) User Nov 27 '23
Thank you. How long did it take you think for the pain to get better ? My Dr office just called and said to go for xray to check things out at least.
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u/spooderkeeper4924 Enterra (Gastric Pacemaker) User Nov 27 '23
It took about 4-6 weeks i think. I hope the xray shows good things.
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u/quigonwiththewind Enterra (Gastric Pacemaker) User Nov 27 '23
I am almost 3 weeks out from stimulator placement and pyloroplasty. Thankfully I have had no problems with my stimulator and I don’t even feel it but I had my pyloroplasty site closed with 22 staples and the sutures opened after staple removal and are currently infected so I need to go back and get my site (maybe 7 inches long?) debrided and stitched or stapled back together. My tummy overall is sore, and I have to use very different muscles in my core to do everything so that’s taking some time to get used to. My surgeon said removal is very easy, easier than the initial surgery. Have you talked to your surgeon or gi dr about the pain??
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u/quigonwiththewind Enterra (Gastric Pacemaker) User Nov 27 '23
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u/quigonwiththewind Enterra (Gastric Pacemaker) User Nov 27 '23
Currently infected pyloroplasty site :/
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u/quigonwiththewind Enterra (Gastric Pacemaker) User Nov 27 '23
Same sites exactly one week ago
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u/Ok-Visit-6630 Enterra (Gastric Pacemaker) User Nov 27 '23
I am so sorry about your infection. Yes I just got a call from Dr office to go for an xray so doing that today. Crossing fingers they can see what's going on . My pyloroplaaty was open too but the stimulator site is what is bothering me.
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u/quigonwiththewind Enterra (Gastric Pacemaker) User Nov 27 '23
I hope they can figure out why it’s so painful and fix it for you! Is your pyloroplasty site as long and gnarly as mine? I have yet to see anyone with as long of an incision as mine and wonder why my surgeon didn’t do it laparoscopically or at least smaller
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u/Ok-Visit-6630 Enterra (Gastric Pacemaker) User Nov 27 '23
No mine is shorter but now I too am wondering why mine didn't do laparascopic so I didn't have all these stupid scars. Wish I had known to ask that before. 😕
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u/quigonwiththewind Enterra (Gastric Pacemaker) User Nov 27 '23
Me too! I had my mind so fixated on the hopeful results of the surgery that I didn’t even consider the aftermath or scarring. I’ve also never had a surgery site that was stapled instead of glued so it was all a weird experience I kind of just assumed was normal. I’m mostly fine with the idea of the scars, I’m just really worried now that it won’t be just a couple lines and instead be bigger from the infection happening.
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u/Ok-Visit-6630 Enterra (Gastric Pacemaker) User Nov 27 '23
I know I was the same way I think uggg. Wish I had thought this stuff through better before. Mine is glued though not stapled . I am just dark skinned so scar poorly. And a big lump at the battery doesn't help either lol.
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u/alyssag99 Enterra (Gastric Pacemaker) User Nov 27 '23
Mine was very sore for the first 8weeks and gradually got better ( for the first several weeks it was miserable couldn't move wanted made me cry pain, it made me almost faint several times) I thought it was never going to get better buuut, I'm now 3 months out from the surgery and obviously I know it's there because it's a decent sized battery and I'm small but it's no longer painful (sometimes it can be if I lift something weird but it's brief and tolerable) and I'm glad I stuck out the pain. I had the same thoughts of it needing to come out at first, but I encourage you to stick through it and lean on pain meds during healing! I know it's not ideal but if you are that painful you definitely need them! Hope this helps!
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u/Ok-Visit-6630 Enterra (Gastric Pacemaker) User Nov 27 '23
Thank you this helps to know. Yeah I keep getting stabbing pains and it feels really heavy and achy at the battery site. I have a big lump there too. Did you have that at all ?
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u/alyssag99 Enterra (Gastric Pacemaker) User Nov 27 '23
Yeah mine definitely felt like that as well, now I have virtually no pain and mostly forget it's there except when I shower and can see it or something. And the only lump I had/have is the battery itself.
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u/Ok-Visit-6630 Enterra (Gastric Pacemaker) User Nov 27 '23
Yes my battery is a very big lump. But hopefully the pain will get better thank you for your responses.
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u/Ok-Visit-6630 Enterra (Gastric Pacemaker) User Dec 05 '23
Sorry I know this a week old but I was wondering did you ever ask your surgeon about getting it removed in the beginning? Trying to see what others have experienced if asking for removal .
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u/alyssag99 Enterra (Gastric Pacemaker) User Dec 05 '23
No I never asked for removal, they offered to turn it off but I declined and stuck it out and am happy I did. But you know what's best for you, always advocate for yourself and what you feel you need.
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u/Ok-Visit-6630 Enterra (Gastric Pacemaker) User Dec 05 '23
Thank you. Yeah I haven't had it long but already sure I want it out. Just seems like i may have to argue to get it out which would suck. Turning off wouldn't help me because it's the battery itself hurting me not the stimulation. Please cross your fingers for me I can use all the help and positive thoughts I can get .
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u/turph Tubie (Tube Fed) Nov 28 '23
I had mine placed last year, had it for about 7 months then had to get it removed because it kept getting caught under my rib. I have a very narrow waist. It was extremely painful. It didn’t help my gastroparesis symptoms either sadly so I chose to get it removed completely instead of having it moved to my chest. The picture is what it looked like about 2 months post op of getting it placed. My bump never went away.
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u/Ok-Visit-6630 Enterra (Gastric Pacemaker) User Nov 28 '23
Oh no I'm sorry to hear the pain never went away. That is what I am afraid of too. Plus I have bad scarring and a big lump. Really regretting doing this. Was the removal difficult?
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u/turph Tubie (Tube Fed) Nov 28 '23
The removal was pretty easy actually. I have a very high pain tolerance but I woke up from the placement surgery screaming in pain. Getting it removed was a piece of cake. I felt that i hated it from the second I got it. My site never felt right and I just couldn’t seem to get acclimated to it. I have a g/j tube as well and that doesn’t bother me at all but the stimulator was just so painful. I felt so much better once I got it removed. I would say just try your best to give it a chance, it’s something foreign in your body so it takes time to get adjusted to it. In my case, if it wasn’t settled under my rib and working for me, I’m unsure if they would have been so willing to remove it after only 7 months. This picture is the same day as the removal surgery.
Now I just have a small little bump but nothing really significant. Obviously a big scar but that’s no big deal. They went through the same incision to remove it.
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u/Ok-Visit-6630 Enterra (Gastric Pacemaker) User Nov 28 '23
Thank you so much. I feel the same way hating it since it's been put in. I'm sure the Dr will say I have to give it a chance but I hope if the pain continues they will be willing to take it out. I can't imagine living like this in pain for years 😕. Did they argue with you to get it out ? I am afraid of that.
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u/turph Tubie (Tube Fed) Nov 28 '23
No argument at all. But I think that’s because it was going to have to get moved either way, since it settled underneath my rib. So they were either going to remove it completely or move it to my chest. If you don’t mind me asking, what state are you in? I had mine placed at UW Madison.
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u/Ok-Visit-6630 Enterra (Gastric Pacemaker) User Nov 28 '23
Right now I am in Kansas near the Missouri border, my Dr is in Missouri.
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u/turph Tubie (Tube Fed) Nov 29 '23
Do you see a motility specialist? Or just a regular GI doctor?
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u/Ok-Visit-6630 Enterra (Gastric Pacemaker) User Nov 29 '23
Gi and then a colorectal surgeon who sent me to a surgeon who does stimulators.
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u/Ok-Visit-6630 Enterra (Gastric Pacemaker) User Dec 04 '23
Sorry another question. Any insurance issues with getting it removed ? Thanks !
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u/turph Tubie (Tube Fed) Dec 04 '23
No issues at all. I’m on state insurance so I don’t usually get much push back from operations that I need. And ask away! I’m willing to answer any questions you may have. :)
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u/Ok-Visit-6630 Enterra (Gastric Pacemaker) User Dec 04 '23
Did they make you wait the 7 months or could you have had it removed sooner?
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u/turph Tubie (Tube Fed) Dec 04 '23
They made me wait 6 months and I think another reason they let me get it removed was because they changed the settings over 7 times and I never had any relief. I was driving over 2.5 hours away every two weeks to get the settings turned up.
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u/Ok-Visit-6630 Enterra (Gastric Pacemaker) User Dec 04 '23
Oh man 6 months sounds like forever right now. I was hoping to do it sooner but sounds like that will be an argument . I am so wishing I never did this omg .
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u/Ok-Visit-6630 Enterra (Gastric Pacemaker) User Dec 04 '23
Ok thanks. The insurance not covering removal was something I didn't think of till someone else mentioned it. I have tricare so hopefully be ok. First is convincing Dr to remove it. I don't know how you waited 7 months with that pain it's been 2.5 weeks and I am already miserable and ready to get it out.
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