Gastric Pacemaker

Today my doctor suggested that I consider having a gastric pacemaker inserted. He is going to find someone here in Mass who inserts them for me. My motility has worsened since first being diagnosed and nothing seems to work. I'm currently on TPN (getting a Hickman next Tuesday) and am resting my bowels for a couple of months before I get another j-tube (had too many j-tube infections). Do most of you with the pacemaker also have j-tubes or caths for TPN? How long did it take for you to get off the supplemental feeding? What was the surgery for the pacemaker like (incision, etc)? Thanks!

Mimi

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Mimi,
I can't help you with any of your questions because I don't have any of these things, but you might try writing Char...I know she has lots of experiences with all of these things!
Judy

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Mimi

If you are willing to travel to Hartford Hospital in CT, Pavlos Papasavas puts in the pacers. He is very good and will be quite thorough before you go through surgery. He is a bariatric surgeon but he also treats people with GP.

Good luck

Teresa

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I am a 25 year old female who has been living with gastroparesis for almost 3 years. It look doctors 6 months to diganosis me with gp. I have had 3 feeding tubes and have had many different hospital stays. I dropped down to 82 pounds and felt my life slipping away from me. In March 2008 my family doctor sent me to Cleveland Clinic. July 2008 my docotr at Cleveland clinic decided to put a gastric pacemaker in. The surgery went really well I spent two days in the hospital and was released. I had to go back a week later for a check up. The incision is'nt very large you are able to tell that the pacer is there but my belly has alot of scars anyway due to all the other surgerys. I didnt notice an immediate improvement until a month ago. It is a slow process my doctor recently turned the pacer up to 6 volts it seem to have helped even more. My stomach does'nt bloat as bad now and I was able to get my j-tube removed. I am still dealing with nausea everyday but it has improved. I am up to 110 pounds now. I feel like getting the pacer has helped improve my quality of life. I feel like Cleaveland Clinic was the answer to my prayers. If you need anymore info let me know and I wil try to help you. May God Bless You.

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I'm being evaluated for the gastric pacemaker, also. Are they still considered experimental? I'm concerned about the cost; specifically, I'm wondering if anyone was successful in getting their insurance company to cover at least some of the expense? Can't see how I can get one if I have to pay the entire cost. I'm actually hoping domperidone will be the answer for me. If not, is there some other procedure/device that vents off some of the painful bloat that accumulates? Any advice would be appreciated.

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I've had a pacer for almost 5 and 1/2 years now, and am actually on my 4th one (my settings are so high that I wear the battery out faster then usual). It has really helped me. Before I got mine I wasn't able to tolerate any tube feeds, so was on TPN. It does take some time to really start to see improvement, so not as long as others. I was on TPN for a while before and then for a while after, before I was tolerating tube feeds. I'm still on tube feeds, because I can't take in all I need orally, especially protien, and we add water to help with hydration. I still have bad spells where I can't tolerate anything (like right now), so I'm back on TPN for right now. Tuesday I'm getting my gj-tube changed to 2 seperate tubes, so we can get the j part down farther and hopefully help me tolerate feeds again. We tried having seperate tubes a couple of years ago, but my body just kind of rejected it. Anyways, even though I'm going through the longest bad spell I've had in a while, we know things would be worse without the pacer and consider the fact that I've had to stay on tube feeds, we consider tube feeds an improvement. As far as bloating, a g-tube can be helpfull, because of venting your stomach.
The pacer is considered a humanatarian device. We had to appeal the insurance's first denial, but after we went before the board they approved it. If you get denied it might be helpfull to get letters from all your doctors saying how nothing seems to be helping and how you really need this. Also try to get together how much they have had to pay up till now for meds, hospital stays, and such and how this pacer is really the only way to decrease all they have to pay out in the long run.
There is a scar where my pacer is that is about 3-4 inches and a few other really small scars. There are so many scars on my stomach that I really couldn't tell you which ones are from the pacer surgery.
Hope this helps,
Char

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Thanks, everyone, for the information. I know I will still have another means of nutrition even after I get the pacer, if I go that route. I'm getting a Hickman put in on Tuesday (2/3) and in a couple of months, I will get another j-tube.

Teresa, I did read about this doctor in Hartford and I think he is the closest one to me who inserts the pacer. I don't think anyone in Boston inserts it so Hartford is the next closest city.

Thanks for the feedback!

Mimi

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You said you had your j-tubes removed. Are you able to eat?

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Hi LizAA:

No, I had the j-tube removed because it kept getting infected and I kept getting blood infections from it. They want my bowels to heal for a while so I know have a Hickman in and I'm on TPN. I tried eating a little but no luck. I'm on domperidone but it gives me stomach cramps. I'm trying to give it a chance but it does not seem to be helping and the IV Zofran works better with the nausea.

Mimi

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Do you have severe gastroparesis? Are you able to get out and about with the nausea or do you have to stay home all the time?

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My gastroparesis is very severe. Less than 10% after 4 hours. The IV Zofran helps a lot with the nausea. I don't get out much - just a little bit here and there.

Mimi

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I just had my gastric pacemaker put in 2 weeks ago...i'm healing pretty well, but so far i haven't noticed a decrease in my nausea. I am able to tolerate food & i do so in small portions, but i am hoping to see some improvement soon. I currently am taking phenergan im 3 times a day through a pic line that i'v had for 3 months, so i hope to soon be able to decrease the amount i take very little or none.

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Hi Bobby:

I hope this works for you! My doctor talked to others and no one thought that the pacer would help me because things were too severe. I do have a hickman so I can at least get IV Pepcid and IV Zofran. But with this hot weather I also need phenergen via my j-tube and compazine suppositories just to get through the day. The three together seem to help well.

I hope your pacer starts helping you out a little better! Be well!

Mimi

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Dear Bobby,
When I got my gastric stimulator many years ago, I was told that it could take up to a full year to see the full possible benefits of the device. Since it has only been about two weeks since your surgery, just give it some time. Your body may still be healing from the surgery and your doctor may need to find a different setting that might work better for you. May you soon begin to feel better. I hope that the stimulator overall will be a blessing to you. Many hugs.

Warm regards,
Bobbiejo

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You might want to keep in touch with Blink when she gets back from her surgery. She has had a temporary trial that worked well and is having one implanted this week.

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Mimi,
I to am seeing a new Dr. to discuss the stomach pacemaker options. I am very uncomfortable, nauseous most of the time, but still want to eat if that makes any sense. So I try eat small meals 4x a day, but my weight is so low i think I need some help. Let me know if you get one how well it works. Thanks Abby

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You might try amitza for your motility. It does have side effects, but usually gets better with time. Also, you can order the generic form of Zelnorm at inhousepharmacy.com They took it off the market, not sure why, but that really helped me for awhile. Abby

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Hi Bobbi Jo
Does the stomach pacemaker help you now with your stomach motility? I'm looking into this next week. Anything you can tell me would be greatly appreciated.
Abby

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Dear Abby,
The gastric stimulator is not indicated to treat the slowed emptying of gastroparesis by making stomach's motility improve or empty faster. Instead, it helps to decrease the feelings of nausea and vomiting by sending electric impulses from the stimulator through the leads to the stomach. I am a person whom it did not help, but I do have a cousin who has benefited from having one. I also know others that have had good results. It is hard to know how each individual will react. I only had the stimulator for 18 months as it was not helping and while I had it, I was put on TPN. As a foreign body inside me it could have served as the breeding site of many of the organisms that kept infecting my central lines. You can also look up information about the product on it's manufacturer's website: www.medtronic.com. I would just be sure to get as many people as you can to share their stories with you and take your time with the decision. I will say that for me, that even though it did not help, I am glad that I at least gave it a try, but of course, making a decision to have surgery should not ever be taken lightly. I hope that whatever decision that you and your doctors make concerning this will be the best one for your health. Let me know if I can be of any other help. I hope that you had a good Thanksgiving and may be able to enjoy your weekend as much as possible. I will be sure to keep you in my thoughts and prayers. Many , many hugs.

Warm regards,
Bobbiejo

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Hi Abbygrace!

I never did get the gastric pacemaker, as my physician did not feel like it would help me all that much. I think, like Bobbiejo said, that it's mostly for the nausea. I do deal with that on a daily basis but my motility is a huge problem as well. There are some people on this site who have benefited from the pacemaker. You might want to start a post to find out who those people are! Good luck!

Mimi

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Hi Bobbiejo!

It's so nice to have you back on our board! We have all learned so much from you!

Mimi

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