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Transcutaenous Pacing


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Does anyone know of any facilities that perform transcutaneous GI pacing to see if it helps with dysmotility problems? I am scheduled for GI pacer surgery at the end of june. the doc said he doesnt know if it'll help, as some people seem to be relieved from symptoms with the pacer and some dont -- no matter what the underlying etiology of the dysmotility...................it would make perfect sense to me, being a cardiac tech and knowing how we temporarily can transcutaneously pace our cardiac patients, to do the same with GI patients -- just to see if pacing would help GI symptoms without having to go in for permanent GI pacer implant via surgical procedure.......

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Hi,

A friend of mine had a temporary gastric stimulator put in for 3 days and felt absolutely marvelous. She is now scheduling a permanent one. Hers was done by Dr. Thomas Abell at the University of Miss in Jackson. I don't know if it was transcutaenous as she had wires coming out of her mouth!

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i have no idea if they still do it, but at one point temple university (in PA) did some type of temporary gastric pacing. based on what i've read though, it may or may not be helpful as an indicator of whether the more permanant GES will be helpful. if the temporary method helps then it's a pretty good indicator, but it's possible for the temporary one not to help & the implantable GES to end up still be helpful, perhaps largely b/c for some the GES takes a longer amount of time to provide a benefit.

i'm definitely rooting for you that the pacer is a big help. while the statistics aren't that great, especially for non-diabetic etiologies, for those that it helps it can be lifechanging. i only wish that i was able to give it a try myself, but can't b/c of GI issues beyond "just" my stomach. i literally have dreams about being able to eat!

:) melissa

p.s. where will you be having the surgery?

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I'd be having the surgery in Maine. .....

.....I am actually not 100% sure i'm going to go through with the surgery though, after talking with the doc (GI surgeon). I am losing weight and am pretty nauseated the majority of the time, but from the sounds of it, the "typical" type of people this GI doc paces are people who vomit all the time and are down to 80-90pounds and are basically dying of starvation......this, to me, is pretty extreme and i dont consider myself in this category.....

.....so i'm thinking maybe i should hold off and see what other ways to better my situation?? not sure what else to do though, since it seems as though i've tried everything, and though i dont vomit, the nausea i have been dealing with for 7 years now, which is getting pretty annoying at this point.....and pretty tiring...

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oh yeah, I asked the GI surgeon about transcutaenous pacing - he said this was a good idea but was not provided in maine (where i live)....he also said that it involved a number of wires down the nose..............yuck.

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i'm not saying this to try to talk you into the surgery, b/c i'm definitely all for trying everything else first. like i mentioned, the success rates for the pacers aren't great for anyone, and even less for non-diabetics. and i know more than one person (and one very well) for whom there are a good number of complications as well, so it's not something to delve into lightly.

but with that said, i would by no means say that most people who get the pacer are in double digits weight wise. that may be the case for people he sees & i'm not saying that there aren't people like that, but it's certainly not the "norm" in general for GES placement. i do know that some are dependent on tube feeding before pacer placement and thus they very well might be at dangerously low weights & nutrition levels without that supplementation. i would agree though that - based on what i know, which obviously isn't exhaustive - most people who get the pacers do have more significant issues with vomiting. and i have heard that the pacers tend to more concretely help with that, i.e. not vomiting, rather than nausea. not saying they can't help nausea, just that i know for some their vomiting is reduced but they still deal with a lot of nausea.

if it were me, which it obviously isn't :) , i would want to feel that i'd tried other options first. am i remembering that there's a reason you can't try domperidone/ motilium?? and/or have you tried an ENTIRELY liquid diet? and what happens if you "eat through" the nausea? i'm NOT minimizing that nausea without vomiting can be horrific; i know at times nausea can be so bad that throwing up would be a welcome relief (if it helped). just wondering how much you've tried to be super creative in various directions, i.e. for some all liquids - though a bit annoying - can be really helpful.

:huh: melissa

p.s. there is a yahoo gastroparesis support/ info group that you may want to peruse. there are a lot more people with pacer experience - good & bad - as well as other treatments including ones that aren't as common. i think i've mentioned most of them to you at some point, but still wanted to mention the group to you in case you weren't aware of it.

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hey melissa,

you said, "am i remembering that there's a reason you can't try domperidone/ motilium?? and/or have you tried an ENTIRELY liquid diet? and what happens if you "eat through" the nausea?"

I actually wasnt supposed to try domperidone because i was on sotalol (they are contraindicated to take together) BUT i did end up trying it anyway after the docs agreed they thought it to be okay. it didnt help any unfortunately....

I havent just tried a liquid diet and was thinking of doing this before doing the surgery.........I hate the thought to have to be on a liquid diet the rest of my life, doesnt sound like much fun, but i am currently still eating solids (and yes, keeping them down) but with MUCH nausea....interesting you ask if i just "eat through the nausea" - generally, i dont get nauseous until about 2-3 hours AFTER i eat and it persists for a fews hours after that point.........generally night time is the worst for me, the nausea wakes me from a dead sleep...........i am thinking that this is because the foods that i eat from breakfast, lunch, and dinner are all piling up on top of each other (to some extent, not ALL of it of course or else i'd OBVIOUSLY be vomiting) .......

..........i can still eat solids and keep them down, but it is hard because of the nausea that follows a couple hours later.. - i think i have such a phobia about vomiting, that i literally mentally refrain from allowing my body to physically vomit.........

i'm not sure if i'd feel right about gastric pacing considering, from what i hear, the majority of people are vomiting, cant eat solids AT ALL, etc.........i think, perhaps, unless i were to fall into such an extreme category, i dont know if it's a smart move to proceed with the pacer...........

....nausea is nausea, but vomiting is another story altogether.....the thing i dont understand is why i am losing weight if i am not vomiting? doesnt make sense....

i wish there was an easier way to help with this, both with the nausea and with the weight loss....seems to me that a liquid diet would result in further weight loss........i dont want to do THAT...........but then again, i'm sure there are ways to really pack in calories with liquid diet and maybe it would cut the nausea......................

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Hi Angela,

I know that you've said that you manage to eat and then get extreme nausea several hours later, do you eat less than you normally would because of the nausea? If so you a probably not taking in enough calories to meet your nutritional requirements even though you aren't wasting calories by vomiting them back?

Have you tried keeping a food diary specifically to work out your calorie intake (I'm sure you will have already throughly analyzed for foods that make you feel worse than others)?

Have you tried a very low fat diet? I know that sounds mad in someone who is loosing weight, but fats are harder to digest and the presence of fat in the stomach causes it to empty more slowly which might worsen your nausea.

I have no experience of gastric pacers so can't comment on them, and I'm not trying to dissuade you from trying a pacer - just trying to think if I can come up with any ideas that you haven't tried yet. You could always delay rather than cancel the pacer surgery if you haven't decided yet about going ahead with the procedure.

Flop

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so my memory did serve me right with the fact that, at least at one point, there was a reason you couldn't try the domperidone. i hope i'm not driving you batty with all of my questions, but when you did try it, how long did you try it for & at one dose? just wondering b/c some docs are more conservative with doses they recommend while others okay more. have you tried erythro? mestinon?

it sounds like you're saying that the nausea doesn't directly keep you from eating since it comes after-the-fact. just like you asked yourself, why the weight loss if you're not vomiting? are you sure you're not eating less b/c of anticipating the nausea, not wanting to vomit, etc? it might not be something you realize. maybe you used to snack more or eat different types of foods that you've just gradually cut back on? do you have an idea of how many calories you generally get in during a given day? i'm not usually a proponent of rigid calorie tracking, but it might be a good idea for just a few days. if you are confident that your caloric intake is sufficient, i would think you'd really want to be examining if something else might be going on that could be causing you to lose weight. b/c if you're getting enough calories in then GP isn't the reason behind your losing weight.

and no, a liquid diet forever doesn't sound like a lot of fun, but if it drastically reduced your nausea it might be worth it. i've done it at times and there are a lot of options; i'm not saying it's great, but it's not the worse thing. i'd love to be able to unhook my tubes & IVs & live on milkshakes & smoothies. and giving all liquids a try doesn't mean you're commiting to that forever. at this point it would just be an experiment of sorts. and all liquids doesn't have to mean more weight loss; if done the right way (using calorically dense items),you might actually be able to get more calories in and gain weight.

sorry for all of the questions...they are well-intended!

B) melissa

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p.s. flop posted while i was writing my ramblings...so sorry about the duplicate questions? great minds think alike flop?? B)

and she jogged my memory about one other thing...along with her question re: trying low fat, have you tried low-fiber?

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lol, we did it again...apologized for being repetitive by being repetitive again:-)

sorry it's in the midst of your thread angela, but i'm getting a laugh out of it!

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Yep, our minds are definately on the same track tonight Melissa. My "appology" was written whilst you were typing your "PS", you must have typed more quickly than I did - LOL

Right, getting back to the real topic....Angela have we managed to come up with any ideas that you haven't already tried? There must be something out there that can help your nausea. Have you got a list of all the anti-nausea meds that you have tried in case anyone knows of any others that you could try?

Flop

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ok...I know little on this subject but just had to say the postings are sounding like that movie GROUNDHOG DAY!!

Lather, rinse, repeat.

Good luck.

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Hi!

I'm sorry you are dealing with all of this. I can relate!

Dr. Abell in Jackson, MS Does do a temporary one week trial of the gastric pacer to see if you tolerate it and it helps. Like so many other things that happen with folks like us---even if it works initially, there is no guarantee it will continue to work for the long haul. The bad news is Dr. Abell has a very lengthy wait list--I think it's up to 9 months now.

I know several (diabetics though) who did well with gastric pacer initially but after a year or two it stopped working for them. It also seems there is a much higher % (compared to cardiac pacers) that fail and have to be replaced. I'm not sure why this is or if the mfg has even figured that one out.

In terms of diet. I was recently at a research facility and the dietician gave me samples of this stuff called "UNJURY". I have a lot of allergies and sensitivity to carbs. It is a powder supplement so it would be liquid but you may want to try it. If you want more info check out their web site www. UNJURY.com

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sunfish and flop,

you two are so funny! lol! thanks for a good laugh! well, to answer the redundency (lol!!) of BOTH your questions,

I havent kept a journal/log of caloric intake.....for what reason, probably more or less because I work 20 hours a week and after that, I feel pretty pooped. Just dont have the energy and mental capacity to actually log out everything I eat and calories. I know that sounds a bit lazy, but I'm pretty drained lately...........it's a good idea and I have thought about doing it, but just havent felt up to being able to do it on top of trying to work the part time hours.........I DO KNOW that i probably have dropped off SOME amounts of foods that I generally was eating .....I know that the TYPES of foods I generally eat have not changed, but I have been having a hard time with finishing a meal - so I have ended up leaving stuff on my plate from lunch and dinner (breakfast i usually can finish - generally consists of a bowl of cerael)..........

I tried domperidone in november or so?? and tried it for about three weeks, i was at a pretty hefty dose - they brought me up above "standard dosing". i cant remember the actually ''mg'' dosage. yup, tried erythro and mestinon. neither helped unfortunately.

I actually have tried to "add in" some calories with milkshakes and instant carnation, this being to try and replace calories that i am probably losing from not being able to finish meals (lunch and dinner) but actually, the instant carnations make me feel more nauseated.....high fat i presume? i am using 2% milk, so maybe i could trying 1% or fat-free, but then i lose out on calories......

poohbear, thanks for the suggesion on UNJURY. I will check it out.

As for anti-nausea meds, I have tried many - i think all - phenergan, compazine, scopolamine, tigan..........i am not taking zofran, IV wise it helps DRAMATICALLY -- the pill form (The dissolvable tabs) help a little, just enough to take the edge off, but doesnt completely cut it. I wish they could hook me up to IV zofran and then i'd be all set!! seriously! I was in the ED a couple weeks ago with the nausea cuz it was so bad and the IV zofran worked wonders for my nausea........

thanks for all your replies/suggestions. I'm sure I'll figure out what to do about the pacer as the weeks pass. my doc is trying a med on me right now, one i have yet to try, so we'll see if that helps....

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smiles -

in short (very short, as i just wrote a book elsewhere that you'll soon see), gastric pacing is an attempt to stimulate the stomach in those with gastroparesis that has otherwise been refractory to treatment (and who otherwise qualify, i.e. have fully functioning intestines). the technical name is a Enterra Therapy, or Gastric Electric Stimulator (GES). the pacer is placed surgically with leads/wires attached outside of the stomach wall. if you're particularly interested there is a lot of info on the Medtronic website (the manufacturer which is http://www.medtronic.com/neuro/enterra/. transcutaneous pacing, while i don't know quite as much about it, is a less invasive way of temporarily trying pacing before proceeding with surgery, for research/ testing, etc.

a search on the forum would bring up at least several past discussions about the pacer as well, perhaps using "gastric pacer" or "stimulator".

hope this helps,

B) melissa

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cardiactech,

I don't know if you remember, but I have a friend I work with in the hospital who is an RT. She has a heart pacer and a gastric pacer. She has NCS and POTS also like me. She is far more advanced with her disease though than I am. She is very knowledgeable and gave me lots of info and MD referrals when I was first diagnosed with this terrible stuff. She is actually the person who hooked me up with Dr. Grubb.

I don't know if she transcutaneously paced before actually getting a permanent one. I will ask her next time I work this coming week. If you want, I can get her email address and hook you guys up. She is an absolute wealth of knowledge and as far as I know, she does not get on any of these sites. She pretty much keeps to herself.

Susan F.

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