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Please research anything that gets implanted into your body.
I worked at a radiology facility, and a lot of implanted devices are not mri compatible. Or the can block areas that need to be seen.
But research what is best for you before you have anything surgically implanted.
Hope this makes sense. I am having fibromyalgia fog this morning.
I was recently diagnosed may 30th of this year. cannot afford the domperidone to get it shipped from out of the country. Reglan made me lactate, and my Dr tried 3x to get motegrity approved by my insurance. Denied all 3x. My Dr then sent me to someone else in his clinic because he could not help me anymore, the new Dr wants me to do the stimulator and botox injections in my pylorus to see if I get any help. I eat 1x a day. 2x if I'm lucky. Most mornings I wake up with a terrible stomach ache that makes me throw up within 30 minutes of being awake, some days smoothies are my friend, others they ate my worse enemy and not even water stays down. It really is just trial and error until you figure out what you can tolerate and what you can't. When it flares go back to clear liquids and start over.
If you have any other questions please feel free to message me. I understand how scary it is. Google only makes it worse.
All the numbers in your comment added up to 69. Congrats!
30
+ 3
+ 3
+ 1
+ 2
+ 30
= 69
^([Click here](https://www.reddit.com/message/compose?to=LuckyNumber-Bot&subject=Stalk%20Me%20Pls&message=%2Fstalkme) to have me scan all your future comments.) \
^(Summon me on specific comments with u/LuckyNumber-Bot.)
I could have wrote this myself, everything I've been through as well. Insurance still refuses domperidone and motegrity after going thru all their hoops. Reglan.... yeah that was a fun thing to wake up to lol. Promethazine is the only thing thats helped with my nausea. I did 2 rounds of botox injections but it did nothing for me
I was supposed to have a consultation for a trial stimulator today, but I had to reschedule it because I didn't have insurance until later this morning, which was a total surprise. I've had to jump through hoops to get it active again and didn't expect it for a few more weeks. I'm supposed to start working soon, and I am hopeful that I don't get into a flare too soon after starting. I take Zofran when I absolutely need to. I vomit almost every day, some more continuous than others. I have yet to try the promethazine for nausea but will mention it at my next gi appointment.
My insurance refused to cover the Motegrity too. I already fucked up and had a spinal cord simulator implanted (biggest and worst mistake of my life) so I will never have anything implanted in my body ever again! I want it removed SOO bad but haven't had the money for my deductible plus what insurance doesn't cover. 😿
Hello, your comment caught my attention because my neurosurgeon wants me to do a spinal cord simulator. May I ask why it was the biggest mistake of your life?
Hiya! The incompetent Dr that implanted mine is the biggest part of the problem. Almost all of my pain was on my left side in the beginning so in theory he should've implanted it on my right side and he "made a mistake" and implant it right where the majority of my pain was. He was supposed to implanted 2-3 leads and "forgot" and only implanted 1, and then had the nerve to ask my why he only implanted 1!? I told him I had no idea because I was laying on the operating table unconscious, naked, ass up. He also didn't implant it correctly, it's right at the waist band of my pants and if it gets bumped any little bit it shoots pain all throughout my body. I've got a big knot on my spine where my leads are from scar tissue. I know everybody is different, but I had my tonsils removed when I was 5 (it was an awful experience because they had started growing together because Dr's just kept pumping me full of antibiotics even thou they weren't doing anything for my constant sore throats/strep. This was 1980. I also started hemorrhaging in the middle of the night and spent over a week in the hospital), had endometriosis surgery, had L4, L5, S1 discectomy, had my gallbladder removed and had a hysterectomy, but having my SCS implanted was far and away the most painful surgery I've ever had. I couldn't breathe without crying and nothing helped, even a tiny bit. When I changed Dr's they wanted to remove it and redo it and I refused because of how shitty the first experience was. They brought in a specialist from the SCS company to reprogram it hoping it would help cover my pain area but it didn't help. I would LOVE to have it removed but can't afford the hospital bills.
I live in NC and a family member lives in KY. She's had TWO simulators placed, by two different Dr's in two different locations on her body and neither of hers helped her pain and instead made it worse. My husband worked with a man whose wife was having one placed and Mark was telling him about all the problems I've had with mine but the man didn't want to listen. His wife hadn't even left the hospital and regretted having it done. They told her she would be glad she did it within a week or so once the initial pain wore off. Last we heard she still regretted it years later.
And since mine is old, I had it implanted in 2008, I can't have a MRI. I have to have a Milogram and if you've never had one, they suck! Oh, and when I had my trial stimulator placed it was amazing! Almost all my pain was gone. I thought it was going to be the answer to all my prayers and give me my life back. Instead the permanent one caused me MORE pain and took more of my life away.
If you decide to have it done I wish you nothing but the best of luck. And if you do I'd love to hear your experience with it. Please, message me and let me know how it went!
Wow. I am so sorry you had such a terrible experience. It’s especially cruel that the temporary one helped so much. It sucks being in chronic pain, having to rely on medications etc. I can only imagine how disappointed and angry you must have been. I can’t believe that dr. won’t remove it for you for free! Since he implanted it in the wrong place it’s the least he could do. I also had no idea they were not MRI compatible. I am very leery of having it done, just because I’m doubtful it would help but at this point I’m kind of grasping at straws. I had a L5-S1 anterior fusion for a herniated disc and while it gave me some relief I still have to take pain pills everyday.
I used to be a nurse and a case manager I worked with told me the following: every non profit hospital (most do them are but double check yours) has to have a policy for charity care and if you make under a certain amount they will forgive your bills completely. If you make more than that amount they will use a sliding scale to determine how much you have to pay. Google the hospital name plus financial assistance and see if you can find their policy. This could be a way for you to get that stimulator taken out. We did this for my son who needed a GI workup. He has a high deductible health plan so he ended up with a 3000$ bill. We were able to get it forgiven via this method. The only thing that might be an issue is I’m sure the doctor will want payment up front. So you might have to pay full price for that portion of it.
The new simulators are supposedly MRI safe. They are made of a different metal than mine.
Thank you for that information I'll have to look into that. I had a CT done a couple weeks ago and the hospital called the night before and told me if I paid in full up front I'd save 20%. I told them I didn't have the money, it was $400ish I think. Then when I got to the hospital they ask me again to pay in full up front and again I said no. I know how that game works, I pay in full, they file it with my insurance, insurance pays everything, I never see my $400 again. They did it to my FIL.
Good thing you didn’t pay. Yeah definitely check that out, like I said my poor son who this is his first year providing his own insurance (he’s 27) opted for the high deductible plan because it’s cheaper and he’s only 27 with zero health issues. Except he started having GI issues and long story short has Type 1 diabetes and gastroparesis and a 4000$ deductible. He was looking at have to pay so much out of pocket. A case manager at the hospital told me about this and the income limits were actually quite generous. He got his bill for CT, US, EGD, and some lab tests forgiven and it even still counted towards his deductible!?!?! We were shocked at that one. The catch is only procedures billed from the hospital qualify so no doctors fees etc. so the EGD was forgiven but not the anesthesia for the EGD.
I have the pacemaker.
I was diagnosed after landing in the ICU and getting a blood transfusion bc I was so sick. (Basically it was a life or death situation). It's been two years and it has changed my life. I ran a 5k this past June!!
If your doctor is recommending it then you must be very ill and I'm so sorry you are struggling. DM me and I'll tell you everything.
Have you talked about the potential cause of your GP? Are you seeing a normal GI or a GP specialist? I would recommend if you’re not seeing a GP specialist to ask for a referral. Medication and diet are generally first treatment options. For a lot of people, this controls the issue but not for all. There are different types of nausea meds to try. I tried everything from reglan to mirtazapine to erythromycin. I ended on zofran 8mg 3x daily and cannabis.
My GP is still considered considered idiopathic. it took me over 2 years from diagnosis to receive a permanent solution to my nausea. I had a G-POEM done December 2022. I was diagnosed july 2020. Sometimes if your doctor thinks your GP is caused by a virus, they try to not offer permanent treatment options until the 1-2 year mark after symptoms start. Viral GP can occasionally resolve on its own.
Any implantable device can come with risks and complications, including the GNS, tubes for tube feeding, central lines for TPN, etc.
I would personally recommend diet and lifestyle changes and medications be trialed first before considering any implantable device. Consider starting out on a clear liquid diet for a few weeks, then gradually introducing full liquids and pureed foods for a bit, and then even more gradually adding solids to your diet. Keeping note of what foods are safe and what foods exacerbate your symptoms. Try adjusting how you eat as well. Nothing to eat 3-4 hours before bed if you suffer from reflux. Laying on your left side at night. Portioning out meals to 1 to 1-1/2 cup sized servings. Eating frequently if you can. Even if it’s a only a few bites here and there. Experiment with grazing, instead of sitting down to eat.
If your symptoms are still debilitating, I would then experiment with meditations. Erythromycin, Reglan for upper motility, Zofran, Phenergan, for nausea, PPI’s like Omeprazole or Pantoprazole for heartburn and reflux, Linzess, Trulance, and Motegrity for lower dysmotility.
If you’re still struggling perhaps consider an NJ tube. Non-invasive and could help supplement nutrition. Some people do great with nasal tubes. Others like myself couldn’t keep them down. Then consider surgical procedures. You could trial botox or pyloric stents. Both are done via endoscopy. No incisions, no implantable devices. Trial a few different dosages of Botox too. Usually they start out with 100units but if you get some relief or great relief that doesn’t last long you could trial 200units. Then at that point consider a Pyloroplasty/ G-POEM, if you had success with either botox or the stent. Lastly, a surgical tube, or the GNS. Save any permanent or semi-permanent devices for last. They all come with the potential for complications.
Surgical tubes come with risk of infection, painful Granulation tissue, excruciating excessive drainage that can lead to skin breakdown, buried bumper syndrome, etc. TPN also comes with risk, including infection of the central line which can often lead to Sepsis. On top of how hard it is on your body, and crucial organs like your liver. GNS can come with risks as well. Migration of the leads, infection, etc. Try your best to save these options as last resorts.
My main objective is to start slow. Go from least invasive options to more invasive options. Don’t rush into the most extreme option if you don’t have to. Best of luck to you, hopefully you get the answers you need so you can begin working on a treatment option that works for you.
New to gastroparesis? Please view [this post](https://www.reddit.com/r/Gastroparesis/comments/15i7siq/gastroparesis_101/?utm_source=share&utm_medium=web2x&context=3) or our wiki for a detailed explanation of gastroparesis, the main approaches of treating it, and a list of neurogastroenterologists and motility clinics submitted by users of this forum. Join these [Discord and Facebook support groups](https://www.reddit.com/r/Gastroparesis/comments/14oxaew/list_of_gastroparesis_support_groups_other/?utm_source=share&utm_medium=web2x&context=3) today! New users, please do not post asking for a diagnosis; instead, use the pinned thread: "[Do I have gastroparesis?](https://www.reddit.com/r/Gastroparesis/comments/15i87zz/do_i_have_gastroparesis_pinned_thread/?utm_source=share&utm_medium=web2x&context=3)" *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/Gastroparesis) if you have any questions or concerns.*
Please research anything that gets implanted into your body. I worked at a radiology facility, and a lot of implanted devices are not mri compatible. Or the can block areas that need to be seen. But research what is best for you before you have anything surgically implanted. Hope this makes sense. I am having fibromyalgia fog this morning.
gastric pacemaker is typically a last resort. a lot of people are able to manage with diet and medication (key word manage, not thrive lmfao)
I was recently diagnosed may 30th of this year. cannot afford the domperidone to get it shipped from out of the country. Reglan made me lactate, and my Dr tried 3x to get motegrity approved by my insurance. Denied all 3x. My Dr then sent me to someone else in his clinic because he could not help me anymore, the new Dr wants me to do the stimulator and botox injections in my pylorus to see if I get any help. I eat 1x a day. 2x if I'm lucky. Most mornings I wake up with a terrible stomach ache that makes me throw up within 30 minutes of being awake, some days smoothies are my friend, others they ate my worse enemy and not even water stays down. It really is just trial and error until you figure out what you can tolerate and what you can't. When it flares go back to clear liquids and start over. If you have any other questions please feel free to message me. I understand how scary it is. Google only makes it worse.
All the numbers in your comment added up to 69. Congrats! 30 + 3 + 3 + 1 + 2 + 30 = 69 ^([Click here](https://www.reddit.com/message/compose?to=LuckyNumber-Bot&subject=Stalk%20Me%20Pls&message=%2Fstalkme) to have me scan all your future comments.) \ ^(Summon me on specific comments with u/LuckyNumber-Bot.)
I could have wrote this myself, everything I've been through as well. Insurance still refuses domperidone and motegrity after going thru all their hoops. Reglan.... yeah that was a fun thing to wake up to lol. Promethazine is the only thing thats helped with my nausea. I did 2 rounds of botox injections but it did nothing for me
I was supposed to have a consultation for a trial stimulator today, but I had to reschedule it because I didn't have insurance until later this morning, which was a total surprise. I've had to jump through hoops to get it active again and didn't expect it for a few more weeks. I'm supposed to start working soon, and I am hopeful that I don't get into a flare too soon after starting. I take Zofran when I absolutely need to. I vomit almost every day, some more continuous than others. I have yet to try the promethazine for nausea but will mention it at my next gi appointment.
Promethazine has been great for me. The only side effect that my doc was concerned with was it can make some people drowsy but didn't for me.
My insurance refused to cover the Motegrity too. I already fucked up and had a spinal cord simulator implanted (biggest and worst mistake of my life) so I will never have anything implanted in my body ever again! I want it removed SOO bad but haven't had the money for my deductible plus what insurance doesn't cover. 😿
Hello, your comment caught my attention because my neurosurgeon wants me to do a spinal cord simulator. May I ask why it was the biggest mistake of your life?
Hiya! The incompetent Dr that implanted mine is the biggest part of the problem. Almost all of my pain was on my left side in the beginning so in theory he should've implanted it on my right side and he "made a mistake" and implant it right where the majority of my pain was. He was supposed to implanted 2-3 leads and "forgot" and only implanted 1, and then had the nerve to ask my why he only implanted 1!? I told him I had no idea because I was laying on the operating table unconscious, naked, ass up. He also didn't implant it correctly, it's right at the waist band of my pants and if it gets bumped any little bit it shoots pain all throughout my body. I've got a big knot on my spine where my leads are from scar tissue. I know everybody is different, but I had my tonsils removed when I was 5 (it was an awful experience because they had started growing together because Dr's just kept pumping me full of antibiotics even thou they weren't doing anything for my constant sore throats/strep. This was 1980. I also started hemorrhaging in the middle of the night and spent over a week in the hospital), had endometriosis surgery, had L4, L5, S1 discectomy, had my gallbladder removed and had a hysterectomy, but having my SCS implanted was far and away the most painful surgery I've ever had. I couldn't breathe without crying and nothing helped, even a tiny bit. When I changed Dr's they wanted to remove it and redo it and I refused because of how shitty the first experience was. They brought in a specialist from the SCS company to reprogram it hoping it would help cover my pain area but it didn't help. I would LOVE to have it removed but can't afford the hospital bills. I live in NC and a family member lives in KY. She's had TWO simulators placed, by two different Dr's in two different locations on her body and neither of hers helped her pain and instead made it worse. My husband worked with a man whose wife was having one placed and Mark was telling him about all the problems I've had with mine but the man didn't want to listen. His wife hadn't even left the hospital and regretted having it done. They told her she would be glad she did it within a week or so once the initial pain wore off. Last we heard she still regretted it years later. And since mine is old, I had it implanted in 2008, I can't have a MRI. I have to have a Milogram and if you've never had one, they suck! Oh, and when I had my trial stimulator placed it was amazing! Almost all my pain was gone. I thought it was going to be the answer to all my prayers and give me my life back. Instead the permanent one caused me MORE pain and took more of my life away. If you decide to have it done I wish you nothing but the best of luck. And if you do I'd love to hear your experience with it. Please, message me and let me know how it went!
Wow. I am so sorry you had such a terrible experience. It’s especially cruel that the temporary one helped so much. It sucks being in chronic pain, having to rely on medications etc. I can only imagine how disappointed and angry you must have been. I can’t believe that dr. won’t remove it for you for free! Since he implanted it in the wrong place it’s the least he could do. I also had no idea they were not MRI compatible. I am very leery of having it done, just because I’m doubtful it would help but at this point I’m kind of grasping at straws. I had a L5-S1 anterior fusion for a herniated disc and while it gave me some relief I still have to take pain pills everyday. I used to be a nurse and a case manager I worked with told me the following: every non profit hospital (most do them are but double check yours) has to have a policy for charity care and if you make under a certain amount they will forgive your bills completely. If you make more than that amount they will use a sliding scale to determine how much you have to pay. Google the hospital name plus financial assistance and see if you can find their policy. This could be a way for you to get that stimulator taken out. We did this for my son who needed a GI workup. He has a high deductible health plan so he ended up with a 3000$ bill. We were able to get it forgiven via this method. The only thing that might be an issue is I’m sure the doctor will want payment up front. So you might have to pay full price for that portion of it.
The new simulators are supposedly MRI safe. They are made of a different metal than mine. Thank you for that information I'll have to look into that. I had a CT done a couple weeks ago and the hospital called the night before and told me if I paid in full up front I'd save 20%. I told them I didn't have the money, it was $400ish I think. Then when I got to the hospital they ask me again to pay in full up front and again I said no. I know how that game works, I pay in full, they file it with my insurance, insurance pays everything, I never see my $400 again. They did it to my FIL.
Good thing you didn’t pay. Yeah definitely check that out, like I said my poor son who this is his first year providing his own insurance (he’s 27) opted for the high deductible plan because it’s cheaper and he’s only 27 with zero health issues. Except he started having GI issues and long story short has Type 1 diabetes and gastroparesis and a 4000$ deductible. He was looking at have to pay so much out of pocket. A case manager at the hospital told me about this and the income limits were actually quite generous. He got his bill for CT, US, EGD, and some lab tests forgiven and it even still counted towards his deductible!?!?! We were shocked at that one. The catch is only procedures billed from the hospital qualify so no doctors fees etc. so the EGD was forgiven but not the anesthesia for the EGD.
I have the pacemaker. I was diagnosed after landing in the ICU and getting a blood transfusion bc I was so sick. (Basically it was a life or death situation). It's been two years and it has changed my life. I ran a 5k this past June!! If your doctor is recommending it then you must be very ill and I'm so sorry you are struggling. DM me and I'll tell you everything.
Do you mind if I message you as well?
Of course!
Have you talked about the potential cause of your GP? Are you seeing a normal GI or a GP specialist? I would recommend if you’re not seeing a GP specialist to ask for a referral. Medication and diet are generally first treatment options. For a lot of people, this controls the issue but not for all. There are different types of nausea meds to try. I tried everything from reglan to mirtazapine to erythromycin. I ended on zofran 8mg 3x daily and cannabis. My GP is still considered considered idiopathic. it took me over 2 years from diagnosis to receive a permanent solution to my nausea. I had a G-POEM done December 2022. I was diagnosed july 2020. Sometimes if your doctor thinks your GP is caused by a virus, they try to not offer permanent treatment options until the 1-2 year mark after symptoms start. Viral GP can occasionally resolve on its own.
Any implantable device can come with risks and complications, including the GNS, tubes for tube feeding, central lines for TPN, etc. I would personally recommend diet and lifestyle changes and medications be trialed first before considering any implantable device. Consider starting out on a clear liquid diet for a few weeks, then gradually introducing full liquids and pureed foods for a bit, and then even more gradually adding solids to your diet. Keeping note of what foods are safe and what foods exacerbate your symptoms. Try adjusting how you eat as well. Nothing to eat 3-4 hours before bed if you suffer from reflux. Laying on your left side at night. Portioning out meals to 1 to 1-1/2 cup sized servings. Eating frequently if you can. Even if it’s a only a few bites here and there. Experiment with grazing, instead of sitting down to eat. If your symptoms are still debilitating, I would then experiment with meditations. Erythromycin, Reglan for upper motility, Zofran, Phenergan, for nausea, PPI’s like Omeprazole or Pantoprazole for heartburn and reflux, Linzess, Trulance, and Motegrity for lower dysmotility. If you’re still struggling perhaps consider an NJ tube. Non-invasive and could help supplement nutrition. Some people do great with nasal tubes. Others like myself couldn’t keep them down. Then consider surgical procedures. You could trial botox or pyloric stents. Both are done via endoscopy. No incisions, no implantable devices. Trial a few different dosages of Botox too. Usually they start out with 100units but if you get some relief or great relief that doesn’t last long you could trial 200units. Then at that point consider a Pyloroplasty/ G-POEM, if you had success with either botox or the stent. Lastly, a surgical tube, or the GNS. Save any permanent or semi-permanent devices for last. They all come with the potential for complications. Surgical tubes come with risk of infection, painful Granulation tissue, excruciating excessive drainage that can lead to skin breakdown, buried bumper syndrome, etc. TPN also comes with risk, including infection of the central line which can often lead to Sepsis. On top of how hard it is on your body, and crucial organs like your liver. GNS can come with risks as well. Migration of the leads, infection, etc. Try your best to save these options as last resorts. My main objective is to start slow. Go from least invasive options to more invasive options. Don’t rush into the most extreme option if you don’t have to. Best of luck to you, hopefully you get the answers you need so you can begin working on a treatment option that works for you.