Gastric Pacemaker: 2 Weeks Post Surgery
I had a gastric neurostimulator (also known as Enterra Therapy or gastric pacemaker) implanted at the Mayo Clinic in Rochester, MN about two and a half weeks ago. Here’s my feedback, so far:
Surgery & Recovery:
- The surgical team at Mayo Clinic was fantastic. Dr. James Swain is an exceptionally warm and compassionate surgeon. Everyone from the pre-surgical nurse to the anesthesiologist was thorough, informative, and friendly.
- I was given morphine and Tramadol following the surgery for pain. These made me so nauseous I could barely lift my head. I then switched to prescription-strength ibuprofen, which I alternated with chewable Tylenol, and Zofran. Much better.
- I would recommend staying overnight in the hospital if you’re given the option. I was — but I chose to return to my hotel room instead. It would have been helpful to be in a hospital bed that first night since getting up and down was really difficult in a regular bed. And a railing in the bathroom would’ve been exceptionally helpful…
- We drove 15 hours from Minnesota back to New York a day and a half after surgery. I do not recommend this. It was horrible. In hindsight, I would’ve stayed put for a couple more days.
- Recovering from the surgery took longer than I expected. My abdomen was really sore and swollen for about a week. It was difficult to do regular tasks, like shower, dress myself, get into/out of bed, etc. Since then it has gotten progressively better. I went back to work after two weeks.
- I still can’t bend over without discomfort. My husband, who is tired of picking up all of the stuff that I drop, recommends having some kind of “grabber.” Shoes that slide on and off easily are also recommended.
Results:
- I have not had a single episode of vomiting since the surgery.
- The middle-of-the-night and first-thing-in-the-morning nausea has decreased to about once a week. Prior to surgery, it was a daily occurrence.
- I have tried a few “new” foods recently with little more than mild nausea, if any at all. Since the surgery, I’ve eaten a peanut butter and jelly sandwich, steamed Chinese dumplings with white rice, ice cream, Egg Beaters, and french toast. All of these things would have caused nausea, vomiting, or both prior to surgery (especially the dumplings, rice, Egg Beaters, and ice cream).
- My portion sizes are still really small (i.e. half a piece of french toast, one steamed dumpling, etc.), since I still feel full rather quickly. But I’ve noticed that I am hungrier throughout the day.
- I’m not yet able to exercise or practice yoga, both of which seem to improve my symptoms, so I assume I’ll feel even better once I return to my regular routine.
Overall, I’m very pleased with the results so far. Over the past five years, the nausea and vomiting had gotten progressively worse for me, even more so during the last six months. The device has already put me back to where I was about 2-3 years ago.
I return to the Mayo Clinic in two weeks for a follow up. As far as I know, they’ll be adjusting the device settings at this time and I’m exceptionally optimistic that this will further alleviate my symptoms. According to my doctors and the Enterra representative, it can take up to six months and several adjustments to obtain the best results. I’ll continue to post updates as things progress.
If you have the gastric pacemaker, please leave a comment and tell me about your experience. If you have any questions about the gastric pacemaker surgery, my experience so far, or how I was able to (finally!) get insurance approval, I’d be happy to share whatever information I can.
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47 Responses to “Gastric Pacemaker: 2 Weeks Post Surgery”
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Wow, they kept Ryan for 4 days after surgery. He had a hard first week and then slowly was able to do more and more himself. They say supposedly about 8 weeks and you’ll be able to get back to exercise, etc. Sounds like you are doing pretty well though. Congrats again, I hope with the turn up that the nausea will be gone. Best of Luck.
Thanks, Lauren (& Ryan!). I thought it was taking me longer than most to recover, so I’m glad to hear that I’m track. It actually makes me feel like I should cut myself a little slack since it’s only been a little over two weeks. I’m so, so happy to hear that Ryan’s doing well…I’m so inspired by his results! My best to you both.
Hi, My name is Brittany and Im 18 years old and I suffer from gastroparesis. I live in New Braunfels Texas and will be traveling to Dallas Texas to see a surgeon on Nov 11th for the gastric pacemaker. Its been a tough road as of this year im doing my senior year home schooled. I was wondering..how long did it take for u to get approved by insurance? and what insurance do u have? why does it take so long?? Thanks so much for this helpful site. U will be in my prayers and thoughts. Take care. hope to hear from you soon.
(email removed for privacy)
Brittany
Hi Brittany,
I’m sorry that you have to deal with this at such a young age, but know that you’re not alone and I’m here to offer support however I can. I’ll be emailing you personally, but I also wanted to reply to some of your questions publicly in case other people need the same info.
It took me about four months to get the pacemaker surgery approved by my insurance company, which is MVP Health. The reason that it took so long is because it got denied three times based on it being termed “experimental or investigational.” It’s not — it’s approved by the FDA as a Humantarian Use Device — but I guess that’s besides the point. I had to file several appeals and eventually speak on a conference call with their “medical board.” Finally they approved it, agreeing that no other options remained.
Please note that some insurance companies do cover the surgery without making people jump through these hoops. It really depends. If you do get denied, however, please let me know because I have a 300-page package of articles, form letters, etc. that I can pass along that I compiled for my appeal with help from a patients’ rights attorney.
Take care,
Crystal
Crystal,
Thanks so much for getting back to me so soon. Your blog is awesome and it has truly answered many questions that i have been wondering. I go see the surgeon a week from today in dallas texas. I live in new braunfels texas which is about 5 hours from dallas. We are going to talk to the surgeon and consult with him about the surgery. Im so sorry to hear that it took soo long for ur insurance to approve of it. Im worried that it will take forever for mine to approve of it too. I have blue cross blue shield of alabama but it seems that everyone i know of it takes a while to get approved. I will for sure keep u updated on everything. Is it the insurance company that takes so long? or is it the doctor orders to have it approved? how does that work?? IF u dont mind me asking how old r u? I dont know many people my age that have gastroparesis. Im actually being home schooled because its gotten out of control and i need to do something…if u know what i mean. Looking forward to hearing from you soon thro personal email. Thanks so much for getting back to me and having this blog as a resource. Take care and talk to you soon.
Brittany
18 years old
New Braunfels, Texas
(email removed for privacy)
Hi, Brittany. Just emailed you!
Regarding the timeline (for others who may be wondering), the reason it took so long was because of the insurance company. They denied coverage three times, so each time I had to file an appeal which then had to be reviewed. It took me about 3 weeks to file my final appeal because it was so in-depth, but other than that most of the time was spent just waiting for decisions.
Please remember: There are time limits for filing appeals. If you don’t file before the time limit, basically you’re out of luck. So it’s really important to keep the process moving on your end and keep checking in with your doctors if there are things that they need to do.
Thanks so much Crystal.
Hello thank you all for your postings to this blog. It really has helped out. I have been going through this now for 2 years and I just don’t know what else to do. The gastric pacemaker is not available in VA. Do you know where I can find out where the closet place is that does the surgery? Please let me know. Thanks in advance for your help. Could you also email me the comments because everytime I try to check the box the response goes away?
Hello again…nevermind about where to find the closet place that does the gastric pacemaker….I find one. Thanks!
Hi Mika,
Welcome and thanks for visiting. I’m sorry that you have to deal with GP but I’m glad that you’ve found the blog helpful. You can find a list of doctors who implant the gastric neurostimulator on Enterra’s website. Here’s the link. It looks one doctor in Virginia does perform the surgery. It’s Dr. Matthew Brengman at St. Mary’s Hospital in Richmond. I hope this helps!
I’ll email this info to you, as well.
Crystal
[...] several weeks, the results from the treatment were really promising. After the first follow-up appointment though, I began experiencing abdominal twitching (video [...]
[...] 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 [...]
Hi Crystal,
I am the mom of a 15 year old boy with GP. It took several months to get a correct diagnoses. The GI docs where we live chalked his vomiting up to being all in his head. After firing them I took him to our states teaching hospital, where the pediatric GI doc nailed it on the first visit. He has been on every med under the sun with little to no improvement. He had a ng tube for a while, but removed it because he didn’t want to be tied down.
We then saw a surgeon about a j-tube, but she suggested we go to Shands at the University of Florida to see a collegue of hers. We finally went to Florida and saw Dr. Saleem Islam who specializes in pediatric GP. He did a trial by endoscopy and I watched my son eat and not vomit for the first time in 8 months. The trial of course had to come out, and now we are playing the waiting game. We are pretty sure insurance is going to deny him because he is a pediatric patient. We can’t wait 3 years to get this done!!! Is there any info you can share with me? Dalton is my sons name.
Hi, Renee. So sorry to hear about Dalton’s situation. As hard as is it to deal with this condition as an adult, I can’t imagine how hard it is for kids and teens. Why don’t you send me an email or contact me via the web form to set up a time to talk about your options with insurance and what else you might be able to do for him.
I had a question about the pacemaker. i have had gp for the past 2 years now. I have tried all the meds and nothing has worked. My doctor mentioned the pacemaker so I started doing research. I am finding out that it helps with the nasuea and vommittting. I would kike to know if it helps with the pain and pushing the food along. Every time I eat I am in pain. I am always bloated and full with just a few bites. Any help would be appreciated before I Make my decision. Daniele Albanese I am also a member of team inspire for people with gp.
Hi, Daniele. Though it’s not one of the intended uses of the device, the gastric neurostimulator has decreased my pain. Prior to surgery, I made pretty frequent trips to the ER due to severe chest and abdominal pain. Knock on wood, I haven’t had a single ER visit since I got the device. That’s not to say that I never get pain, just that it is less frequent and doesn’t seem to last as long now. Still, the number one improvement I’ve noticed is in regards to nausea and, interestingly, sleep. It hasn’t helped the fullness or bloating too much. It’s much easier to eat now since I don’t have such terrible nausea all the time — and if I eat a little to much, I am just as full and distended, as ever — so I have to be really careful and pay close attention.
Hope this helps!
Crystal
Thank you for your response. I am glad to have found your blog. I have another question. I have been in stomach pain with some pain on the sides of my stomach for a week now as how my gp goes. How do I know it is not a beazorsoar? Have you ever gotten them? I also wanted to know if you know what caused you to get your gp? Doctors don’t know what caused mine they guess my disphasia I already had or past radiation and chemo therapy. Thank you Daniele
Hi, Daniele. In general, pain is quite common with gastroparesis. It’s actually one of the main symptoms for around 90% of patients. In regards to bezoars, they’re fairly rare with only about 20% of GP patients ever getting one. They can result in a sudden worsening of vomiting, fullness and pain. If you’re concerned whether or not you have one, you should contact your doctor.
I’ve been labeled as having “idiopathic gastroparesis.” Basically, like you, they simply don’t know what caused the disorder. Sadly, idiopathic gastroparesis is actually said to be the most common type with nearly 40% of patients in that category. (Followed by diabetic GP and post-surgical GP) Recently I underwent some additional testing at the Mayo Clinic and they’ve ruled out nearly everything except enteric neuropathy — meaning the nerves within the digestive tract itself, called the enteric nervous system — are not functioning properly for whatever reason.
Hope that helps!
Crystal
Hi, how long after your surgery did your doctor wait to increase your pacemaker settings? I had surgery 6 weeks ago and still have nausea and vomiting. My surgeon said yesterday that it was too eary to increase the settings and said that I have to wait 6 more weeks. Also, do you still have pain when bending down, and are you used to having the pacemaker inside? It is still a weird feeling to have it, I think it is because I have no fat and you can feel and see the pacemaker when you look at my stomach. I hope that if I ever gain some weight you won’t see it or feel it as much. What type of foods worked for you when you first started to eat? I haven’t had solid foods in 3 years, so I am starting out slow with mashed potatoes etc.
Thanks,
AnnMarie
Hi, AnnMarie. I didn’t have my settings changed until my 3 month check-up. So that would be right around the time your doctor is suggesting. I no longer have pain from the stimulator unless I wear clothes with a waistband that’s too high or too tight or I’m especially distended. I very rarely feel it and don’t notice that there’s something in there unless I stop to think about it; it is visible but my clothes hide it.
I wish they would provide patients with more guidance post-surgery. I’m actually hoping to work with Medtronic on that. In terms of what to eat, I think it largely depends on where you were before surgery. Soft and/or semi-liquid foods like mashed potatoes, soup, applesauce, yogurt, smoothies, etc. might be a good place to start if you’re not used to solid foods.
Good luck!
Crystal
Our 20 year old son was diagnosed with gastroparesis at the age of 19 after almost 2 years of test after test. My husband loves to cook and create recipes. We started a website with several recipes that are low fat (almost no fat) and very low sugar. Our son has tried all of these dishes and tolerates this food as much as any other. Even though he isn’t able to eat a quantity he is able to eat gravies and sauces to at least make him feel like he does have a bit of a choice. Please go to http://www.healthycomforteats.com for recipes. There is no charge for the website.
Good luck to all of you!
Karen
Hi Crystal,
My daughter, Chelsea, has had gastroparesis for over 2 years. Her health is declining rapidly and I am so worried about her. She has two J tubes in her stomach right now. One for the feedings and one for venting. Her pain with the gastroparesis is completely unbearable. She has to be hospitalized just from putting the tubes in her stomach. She is in the ER at least every 2 weeks from dehydration and pain. The doctors DO NOT understand this pain and sometimes can be totally rude. This includes even the GI doctor that puts the feeding tubes in. He tells Chelsea that she shouldn’t be feeling the pain she does. Pretty much, “it’s in her head.” I know you hear this from tons of people, but I am at a loss on how to help her with the pain. The nausea and vomiting are hard enough, but the pain is so misunderstood. Some people, as well as the doctors, think she just wants the meds. I know this isn’t the case. She just wants to feel better.
I am wondering if she would even tolerate having the pacemaker put in. If she is under so much pain and having to be hospitalized just when having the doctors mess witht he feedings tubes, do you think she would still be a candidate for the pacemaker? We have been told by her doctor here that she (the doctor) wouldn’t even consider it, because she (chelsea) complains so much about pain already.
I am so overwhelmed, sad, tired, emotionally spent with having to fight for this disease to be recognized and Chelsea to be given the care she so badly deserves. Do you recommend a specific doctor in the Western part of the United States for us to have a consultation with? I took her to UCLA Medical Center in August, but they turned her down because they only do the pacemaker on diabetic patients. This after we made her travel all the way there.
Please let us know what ideas you may have. I would love to talk to you more about this~
Thank you so much,
Sherri Petersen
Hey Sherri!
My boyfriend also has pain in the ‘inside’ of this stomach where the J-tube is.
The dr looks at him like he is crazy. He think every time his throw ups the tube gets pushed out of the lower intestine….
Sorry to hear about what your daughter is going through right now.
ANYWAY – The Dr who is planning doing my boyfriend’s surgery is here inVegas?
Maybe you can call her and see if there’s a good Dr in your area?
She works for University Health System
Annabel E. Barber. MD, FACS
702-562-17777
I hope the best for ya!
I have suffered from daily vomiting and nausea for 5 years – 2 years ago I started with explosive runny stools literally within 20 minutes of ingesting anything. I am so upset about the amount of down time I have – unable to care for my health impaired child and always in fear of losing my part time job that provides insurance for the entire family.
Is this a condition where one can get disability even for a while? I am being looked at now for the pacemaker – my GI doc is not thrilled about the pacemaker and is suggesting a permanent feeding tube. I also have fibromyalgia, and SLE Lupus. I never tried for disability for the Lupus, as I was able to control that for the most part with diet, and exercise. Now I can do neither.
My question, how do you support your family when you are sick all the time? I went to nursing school to try to help myself and daughter, but was unable to finish because of the illness, I now work in the hospital with patients, and can barely make it through 2 days a week. I had my gallbladder removed and symptoms got progressively worse.
Is there any financial help out there?
Best wishes to all, and thanks for any help anyone may pass my way, Srtuggling 40 year old Mom from South Bend, IN.
Hi, Robin. First, a question. Were you tested for Small Intestinal Bacterial Overgrowth (SIBO) after the bowel problem started? A large percentage of gastroparesis patients end up with SIBO due to the impaired motility, carb-heavy diet and often decreased stomach acid due to PPI use. It can cause changes in bowel habits, in addition to bloating, belching, pain, cramping, and nutritional deficiencies. You may want to look into it if you haven’t already.
Gastroparesis certainly makes everything more difficult, including working. Some patients do go on disability, though it’s my understanding that it’s difficult to obtain. For more information, you may want to contact Jennifer Jaff. She is a lawyer with gastroparesis who has a great deal of knowledge about these things. Here is her website: http://www.advocacyforpatients.org
Hope that helps. Hang in there!
Warmly,
Crystal
Hi, Sherri! Sorry for the delayed response. So sorry to hear about everything that both you and Chelsea are going through. Living with gastroparesis is difficult for us patients, but I know it’s also extremely hard on the caregivers and loved ones.
It frustrates me that doctors still don’t accept that the vast majority of GP patients, especially idiopathic patients, experience pain, which is often severe and debilitating. Papers and studies have been released illustrating this fact, but the medical community has been slow to catch on.
I’m not sure why the doctor would rule out the pacemaker based on pain associated with J tubes. The surgical pain was fairly severe, but it only lasted a few weeks — unlike J tube pain which would continue as long as she has them. Now I usually don’t have any pain associated with the device. If his thinking is that the pacemaker won’t help the gastroparesis-related pain, that’s not entirely true. It’s not indicated for pain, but there was a recent study done that found that patients who had severe abdominal pain prior to pacemaker surgery experienced a significant reduction in pain afterward. Unfortunately, as far as I know, it hasn’t been published yet.
I can imagine how frustrating it was to travel to UCLA and to have them turn you away. I once had a similar experience with Cleveland Clinic. Have you tried Dr. Edy Soffer at Cedars-Sinai? http://www.cedars-sinai.edu/Patients/Programs-and-Services/Esophageal-Program/Expert-Team/Edy-E-Soffer-MD.aspx
Hope that helps! My best to you and Chelsea.
Warmly,
Crystal
Hi, Karen. Thanks for sharing the link! I took a look at some of the recipes — looks good
Hello Crystal,
I have been recently diagnosis with GP in May of this year. I am a juvenile diabetic, so my blood sugars are running anywhere from over 600 to dropping in the teens. I had an appointment on Sept. 1st with a surgeon in Charleston, WV and he suggested that I was a good canidate for the gastric pacemaker since I was a diabetic. Today I called my insurance company (which is Bluecross/Bluesheild) and they denied me due to an overnight stay in the hospital. They said they would approve it if it was outpatient. In my case I think I need to be kept overnight due to setting up infections and monitoring blood sugars on top of the surgery. I have found out a lot of information on this website which answered my questions. But do you have any advice for me? I seen where you said you should stay overnight in the hospital if you get that option. I hope I can get this ASAP.
Karla Varney
Hi, Karla. First, it’s great that your insurance company is willing to approve the gastric pacemaker surgery! It’s often a battle just to get to that point. Does your surgeon feel that you need to stay overnight in the hospital? If so, you can file an appeal with the insurance company and have him/her write a letter as to why the overnight stay is necessary. To do that, call your insurance company and tell them that you’d like to appeal the denial. You can ask for a fax number where your doctor can send the letter of medical necessity for the overnight stay.
Hope that helps!!
Crystal
after at least 4 years of vomiting and nausea I was diagnosed with gp. my gastro doctor is sending me to another doctor to see if I am a candidate for the pacemaker. Needless to say I am nervous about this procedure. my gp doctor told me its only a 50/50 chance that it will work. that doesn’t make me feel positive about surgery. How long were you out of work? gp is horrible I don’t understand why they make it so hard to get disability. let them throw up for 4 days at a time see how they like it
your whole body hurts.
Hi, Sherry. I know where you’re coming from. It took me two years to finally decide to pursue the gastric pacemaker (now I wish I’d done it sooner!!). When making the decision, I think it’s important to consider a few things. First, are you a good candidate? Not all GPers are, so this is something that your doctor, surgeon, and possibly an Enterra rep should all decide together. The device is generally indicated for those with chronic nausea and/or vomiting secondary to diabetic or idiopathic gastroparesis who are healthy enough to undergo surgery and have tried all other available medications/treatments. Second, what are your expectations? Enterra Therapy isn’t a cure for gastroparesis and most people will continue to have some symptoms. In about 70% of recipients it improves symptoms of nausea and vomiting by at least 50%. You have to decide if that would be “good enough” for you and if it’s worth the try.
Hope that helps!! Good luck!
Warmly,
Crystal
Crystal, I am having the surgery on Oct 7th. My insurance finally approved it. Thank God! I have a couple questions. How long did it take you to recover from surgery? Is the pacemaker visible? or can you just feel it under your skin? How many incisions did you have? My doctor said he was going to do 2 incisions. One for the leads and another for the pacemaker itself. I am very excited but very nervous. I just want this to work for me and in all hopes of not vomiting everyday. My goal is to sit down with my family and have Thanksgiving dinner this year without getting sick. I hope you can help me. Thanks
Carla
Hi, Carla. Did you see my most recent post about the gastric pacemaker? It might answer some of your questions — Update: Gastric Pacemaker
As you can see in the photos, I have three incisions, one larger one and two smaller ones. I was very thin for my frame prior to surgery, so you could see the device at first — but my shirt hid it fine. I’ve gained about 10 pounds since then and you can’t really see the device anymore.
Good luck! Please keep us updated on your progress.
Warmly,
Crystal
well I had my surgery on oct 7th. it went really well. I had to end up staying 2 night one for obervation and another but I got real nauseated and throwing up. I am home now and very I mean extremly sore. I cant see a change yet though. My doctor said different people react to it right away and other may take up to 2 months. I don’t get sick and I am able to eat regular food. Finally eating like a normal person w/o getting sick. Sounds good to me. How long did it take for you to heal? I two incisions on my upper stomach and they are about 2 1/2 inches long. I am going to buy some of those scar solutions when i heal to minimize the incisions. I hope this works for me though. I am having some pains in my right side straight across from where I was cut and it feels like I am being cut open with a can opener. Did anything like this happen to you? I is a constant pain the comes and goes but comes back harder and harder. it is unbearable at times. I still have to take pain meds for my pain though. Akso you can feel the pacemaker but cant see it under my skin. I hope this helps me. I will update you more soon when I go back for my follow up, Thanks
carla
Hi, Carla. Glad your surgery went well! I was in pain for a couple of weeks, for sure. Once it finally started getting better though, I was back to my regular routine fairly quickly. After my first surgery, the scars weren’t very noticeable once they’d healed. After the second surgery, they are quite a bit more noticeable but I think that’s just because they had to cut through them again. It seems that most of us have fairly severe pain in one side or the other following surgery (depending on where the stimulator was placed), but I always recommend that people check in with their doctors if they are concerned. No harm in doing so! Hang in there. Sending healing thoughts and wishes!
Warmly,
Crystal
hi, i am having the paceamaker put in in 3 weeks now, i am very nervous! don’t know what to expect, how long does the surgery last? i am having it done at clevealand clinic in ohio
i’ve had chronic gasroparesis for 3 years now, in so much pain and nausea it has ruined my life totally! i’m looking forward to feeling better, eating regular foods and not being in pain all the time, like some people have said on this blog that when you go to the ER every 2 weeks, they think your crazy and just want drugs, they have no idea how WE feel!
i will post when i get the surgery and feel good enough!
Thanks for such an informational website!!
Kelly
Hi, Kelly. The actual procedure doesn’t take too long; an hour or so, I think. But you’ll have pre-op and recovery, so even if you don’t stay over night in the hospital, you’ll be there all day long. You will need to take it easy (very easy!) for a couple of weeks after the surgery. Take care and good luck!
Warmly,
Crystal
I have probably a weird question. I was diagnosed with gastroparesis about 20 yrs ago and am just numb. I can’t rell if I am hungry or full. When I finally do eat that’s when I get hungry and then I eat way too much. Dr has me on miralax because I can go for 2 weeks without a bowl movement without it every day. Is this usual for prople with gastroparesis?
My Stomach feels numb and bloated all the time. Am in the process of trying to find another gastro Dr in Dallas/Fort worth area. Mine retired with no one to take over his practice. Do you think this Gastric Pace Maker will help me since I’ve had it for sooooo long?
Hi, Trish. Regarding the constipation, it is a common concern for GP patients and many take some kind of OTC laxative. It can be due to either the lack of fiber and fat in the diet or to motility issues further down the GI tract. Bloating/distention is also very common and Miralax can actually contribute to that for some patients, as well.
As far as feeling numb, I’m not sure I’ve heard it described that way before, but I can certainly understand how hunger signals would get messed up after 20 years of motility issues. I know what you mean about not being hungry until you eat and then eating too much, though. That has certainly happened to me.
Do they know what caused the gastroparesis? Is the slow transit just in the stomach or are the small bowel and/or colon affected, as well? The answers to those questions will affect whether or not you are a good candidate for the gastric neurostimulator.
Warmly,
Crystal
Hey, I live up and canada and this procedure isnt availble
here but my specialist has referred me down to the Mayo Clinic. My
insurance here is saying that they will not pay for the procedure.
I was wondering if you could send me the info you compiled for your
appeal so that I could use it in mine. If you could email me
personally and let me know if you would be willing to do this for
me that would be amazing. Thanks you soo much. Melissa
Melissa, We were told that our insurance would deny payment
for the stimulator but our daughter’s surgeon and GI specialist
submitted all the information to them and we were approved on the
first attempt. (we were told it would take 12-16wks) I believe it
all has to do with the physician submitting the proper
documentation when they apply for the pre-authorization. One thing
we were told, if the insurance authorizes the placement of the
temporary they have almost no ability to refuse the permanent. Hope
this helps. Kelly
Hey, It’s so nice to see other young people have GP like me! I was diagnosed with this disorder at the age of 17 and i am now 24. It has been a long HORRIBLE run, and about two years ago my doctor gave me domperidone for treatment. This seemed to be the only medication i could take to somewhat control my GP. Last week the FDA stopped the manufacturing of domperidone in the US by pharmacists. Now i’m temporarily on Reglan and Zofran to supress the nausea and vomiting and stimulate my stomach. The only way i can get the domperidone is through canada. I’m wondering if the fda pulling this drug is a wakeup call for me and maybe i should seek the pacemaker surgery???? I’m not married yet, and have no kids, but i worry about what these meds. will do to me in the long run. I’m so up in the air with it, and my family is encouraging me to pursue the surgery because they see how much i suffer. The last emptying study i had was about 4 years ago and showed i empty 6x slower than normal. I would love to get your opinions!!!!
We are from Fort Stockton,TX. I have two girls 22 and 16 both have this horrible disorder. Everyday is a struggle in my houe…they have no life….My oldest is getting the pacemaker put on her stomach June 1. My youngest needs it but we were told she couldn’t cheer its going to be her senior year and she dosen’t want to give up thing she worked so hard for….How active can you get with the pacemaker? I had heard a nine year old little girl had it and she still competes in soccer and swimming?…What do yall think?
Hi, Missy. Different surgeons seem to make different recommendations, but I have been quite active since having my stimulator implanted. I’m training to walk a marathon and practice fairly vigorous yoga. I’ve also gone kayaking, rock climbing and swimming with dolphins without any problems. My surgeon did advise me not to run long distances, but others have been told that’s fine. Before I had surgery, the Medtronic representative I met with told me that they implanted the device in a young woman who played competitive soccer (at the college level, I believe) and she continued to play afterward with no problems. The Medtronic patient services line is pretty helpful; you could call and ask them what the general recommendation would be for cheering. (800) 510-6735
Hope that helps!
Warmly,
Crystal
Jenna has been able to return to playing tennis (limited time on the court) since her stimulator implant last fall. We were just advised to be very careful that she not get hit
in the stomach but other than that she could return to any activity she was comfortable with.
We are curious to see what others are using for pain management, she has had an increase in pain over the last few weeks and we are headed back in to see her GI specialist on Monday and look at changing some of her meds. Thanks, Kelly
My mom recently had the pacer placed about 1 month ago. The doctor had recently increased the voltage 2 weeks after surgery but she just started vomiting again like crazy last night. It’s so hard to see her go through this again (she’s been out of work for almost a year now due to hospitalizations and being bedridden from the nausea and pain. None of the antinausea medications even work for her. I am just hopeful that this pacer will eventually kick in and make her symptoms go away so she can live a somewhat normal life. Did it take months for some of you to start to feel better?
I was wondering if anyone out there has had this procedure done that is over 80 yrs old? My mother, who is 83, was just diagnosed with GP and will be seeing the GI this Tuesday. She is in pretty good health otherwise, and does not have the vomiting (yet), but the bloating & pain has her in tears sometimes. It would be nice to know how the recovery is on the elderly. Thank you!