Feeding Tube

[smiles]

Went to another specialist. Was told he knew more than others. He said I was 'special'. More complex than most and therefore needed special attention. He said he and his interns and fellows would research and get back to my cardio on their suggestions. The only suggestion he did offer was a feeding tube to prevent the swallow syncope (passing out or having convulsions when I eat). He said I'd obviously worked hard to eat healthy when I could eat. He was very impressed I hadn't lost any weight!

Any one else been told this or have a feeding tube??? That was the last thing I'd expected to hear. Feeding tubes are easy to care for cuz I've dealt with them in others.

How many of you have been thru surgery and can handle just going thru surgery????

What do you all think?

Smiles wasn't smiling when she got to the car after the appt.

[Sunfish]

hi not-so-smiley smiles (sorry you're not so smiley...it reminds me of when i'm a not so sunny sunfish ) -

to the best of my knowledge, no one on the forum has a feeding tube of any type (there are many options) due to swallowing-related syncope. i know of one person who has a tube (G i think...) due to problems with swallowing itself, one person (or maybe two?) who have a J tube for nutrition b/c of severe gastroparesis, and several others who have thought about and seriously considered getting some type of tube at some point for one of the same reasons (problems with either swallowing or stomach motility). so there may not be anyone that can respond to your question of whether a tube would help with syncope but there are a few who have some degree of experience with some type of tube placement.

personally i've had several types of "feeding" tubes, though none of mine have actually been placed with nutrition as the primary purpose. i don't have a problem with swallowing but i have severe motility problems as well as some other issues throughout the rest of my GI tract. i am actually entirely dependent on IV nutrition and hydration so have a central IV line for that but have various GI tubes for other reasons. currently i have a roux-en-y J tube, a very unusual type of J tube and a PEG, which is a very common type of G tube. the J tube is for my medications (as i can't take them orally since my stomach doesn't work) and a bit of tube feeding to keep my intestinal health better; i don't really get any nutrition from it b/c of the small amount as well as absorbtion problems. the G tube is only for gastric suction/ decompression, i.e. i'm attached to a suction machine most of the time which keeps me from throwing up (most of the time).

i'll try to give a quick explanation of the various tube options though, how they're placed, & what the uses usually are. the two general categories are G & J tubes. A "G tube" is short for a gastrostomy tube, which means it is in the stomach; a "J tube" is short for a jejunostomy, which means it is the small intestines (specifically in the jejunum, a certain portion of the small intestines).

for those without any major stomach or reflux problems, a G tube would usually be used. if something related to swallowing is the reason for tube placement this would likely be the best choice b/c as long as it isn't contraindicated, G tubes are generally easier to place, maintain, care for, etc. J tubes need to be used when there is a problem with stomach function b/c they bypass the stomach entirely. there are people (like me) who need both, but based on what you've said it sounds like a G tube is what is being considered for you.

when needed temporarily or as a trial before more invasive placement, NG & NJ tubes can be inserted through the nose, down the back of the thoat into either the stomach or further down into the small intestines/ jejunum. (NG = nasogastic, NJ = nasojejunal). i had an NJ tube for a few days at one point and it was not pleasant. for me it actually suppressed my ability to swallow at all (not necessarily the norm) so that i had to spit my saliva into a cup, drooled when asleep, etc. and it hurt like heck. placement is done without any need for sedation or anesthesia and usually requires repeated swallowing by the patient; i'm guessing that if swalling is problematic for you syncope-wise they won't want to try this.

G tubes come in the form of a standard/ surgical G tube or a PEG tube; PEG stands for percutaneous endoscopic gastrostomy. PEG tubes are the more common choice these days as they are easier/ less invasive to place. "percutaneous endoscopic" describes the placement method. the placement is done under sedationas part of an endoscopy and is an outpatient procedure; a GI doctor can perform it rather than a surgeon, and while the person told me that it would hardly hurt at all afterward was full of it, the pain is controllable & short-lived. i don't know as much about how surgical/standard placement is done, but i know it requires general anesthesia and is generally only used now if there is a reason that a PEG can't be placed (i.e. extensive scar tissue from prior surgery). there are still numerous types of options in terms of the actual tube and sometimes - after a period of time (~6 wks) - a tube can be changed to a "button" that is flush with the skin and attaches to the tube itself when it is being used. if/when tube replacement needs to happen, most G tubes can be replaced without any sedation or anesthesia, sometimes even at home.

J tubes can also be placed surgically or endoscopically...sort of. an endoscopic placement of a J tube can only be done through a PEG tube and is then known as a PEG/J; essentially a PEG tube is placed that has a "J" portion inside of it, such that a thinner tube (the J portion) is threaded through the thicker tube (the G portion). the "inside" J portion is longer & is guided into the small intestines/ jejunum where it is secured with clips or weighted. while this can seem advantageous b/c of the easier placement (no general anesthesia) and having "two tubes in one" for those needing both, there are problems as well. the J portion has to be a much smaller bore (width) and this can be problematic for various reasons. over time it's also possible for the J tube for "migrate" back up into the stomach. surgical J tubes require general anesthesia for placement and usually (i think) at least a night in the hospital afterward. i have a very unusual type which was placed via a "roux-en-y" procedure, which in short non-technical terms means they cut my intestines in half entirely & stitched them back up in a different way; it was more invasive (open vs. laproscopic) & meant more pain & a longer recovery but for me was a better long-term option for various reasons, not least is that after the first time i'll be able to replace the tube myself at home. and even the first time it won't require anesthesia or even sedation, usually the case for J tube replacement.

so...that must be about everything by now. if/when you decide to proceed i can fill you in more about various other things, i.e. tube/site care, different feeding options, etc. but for now i'll stop with the "tube type tutorial" of sorts.

and about the surgery question in general, i've had several surgeries requiring general anesthesia & more procedures than i can count with sedation during my dysautonomia years. all in all i've done pretty well with recovery (there was one exception but we think it may have been a pain med reaction...we'll never know for sure). the surgery i had most recently was quite extensive (4.5 hours, one open incision & three laproscopic, three surgical sites inside my abdomen, etc) and i did okay. it always takes me a bit longer to come out of recovery but we know this going in so it's not a huge deal. i suppose everything hits me a bit harder than a "normal" person but i've never had surgery while "normal" so i can't really compare! people have had various experiences with various surgeries on the site, so you may want to do a search. but in general - especially with a good/ informed/ aware anesthesiologist - it goes okay for folks, perhaps just requiring a bit more patience in terms of post-op expectations. of course there are exceptions, but there are in the general population as well.

okay...i'm typed out. best of luck with your decision(s) going forward & i hope it helps!

melissa

[smiles]

Well sunny Sunfish, God Bless you!

You are a wealth of info! I am so much better informed now. Thank you for your time to explain all of this.

So this means that you take nothing at all by mouth; is that correct? Do you miss eating or is that a dumb question?

Are there other options to treat swallow syncope that you know of? I've heard it's a very rare condition. Some people end up with pace makers. I'm wearing a heart, event monitor for a month to rule out the necessity of a pace maker.

Thanks again Sunny Sunfish, from your friend Smiling Smiles

[Sunfish]

hello again:-) you're more than welcome & so glad that the info was/is helpful. whenever i ramble on i always just hope that at least it ends up getting read & is at least a bit helpful!

one other thing i meant to add is that there's a great organization - the Oley Foundation - which is a nonprofit entirely dedicated to the support & education of those on long-term tube feeding or intravenous nutrition. their info won't necessarily be so helpful as you're deciding on how to proceed but if you do go forward with tube placement it's a good resource going forward. their website is http://www.oley.org.

regarding the swallow syncope, i honestly don't know much of anything about it (other than what it is in a general way) so don't have anything to add there. in what way would a pacemaker help things? is there a direct correspondance with extreme bradycardia in swallowing syncope (as opposed to low BP)?

oh yes...to answer your questions about eating for me. i don't get any meaningful nutrition by mouth. with the gastric suction i can be a bit more creative with putting a few things in mouth b/c the suction means they can just get sucked/ drained right back out of my stomach (via the PEG tube). it can't be anything substantial but is better than nothing. essentially i can do a bit of things that are clear liquids or close to it, i.e. hard candy, popsicles, sorbet, sherbet, etc. and in very small quantities, i.e. a serving a day or so. i've also recently discovered that i can get away with a FEW potato chips if i let them completely dissolve in my mouth..i was never actually a potato chip fan but sucking on a sour cream & cheddar chip does wonders for a salt craving! without the suction i can't do anything without throwing up, and actually will throw up just the digestive fluids made by the body at times too. sorry for the graphics

i do miss eating horribly. not a silly question & many ask me so no worries there. i much prefer questions to assumptions, ya know? and though it's been awhile now it hasn't really gotten any easier. i don't physically get hungry or feel like eating but that's not the same as wishing i could eat, ya know? i have cravings & know what i'd delve into first if by some unexpected change i'm ever able to eat again.

good luck with all of the decisions you have to make..i know how tough it can be when there aren't many (or any!) others to compare notes with...

melissa

[flop]

Hi Smiles (and in response to Melissa's question)

I've done a quick search for swallow syncope and it seems to be very rare. I found a medical journal article published in "Heart" in 2000 that described the testing of a patient with swallow syncope. It showed on both holter monitor and during electrophysiology study that he had episodes of complete AV block (where no electrical signals pass through the AV node to tell the ventricles to beat, essentially the patient's heart was pausing for 3 seconds at a time when he swallowed fizzy drinks or had a balloon inflated in his oesophagus).

The author reported that the treatment plan for this patient was to place a permanent pacemaker.

I know that the paper only talks about 1 patient and it doesn't say that all swallow syncope is caused by bradycardia so you can't make generalisations.

If you would like more details of the paper PM me and I'll try to send you a link.

I guess that your doctors are hoping to catch one of your syncopal events on the heart monitor to see if you are very bradycardic or having a problem such as AV block at the time of the collapse. Have you had a blackout whilst on the monitor yet?

Flop

[Guest Eliza]

Smiles,

I am sure that you might have been told this before, but just in case I will mention it. When you have the vasovagal reaction to swallowing, I know there really is no cure except for watching what you eat.......I have heard that COLD (and possibly hot foods, but not sure) will cause this reaction. So, you definately don't want to drink or eat anything COL (like ice cream, ice water, etc). It should be "room temperature" when ingested to prevent from over stimulation of the vagus nerve that causes the syncope spells.

[cardiactec]

I would have to side with flop on this one in regard to cardiac pacing and not a feeding tube......

if you are having swallowing syncope, it's not any mechanical or physical problem OF swallowing that is the primary problem, but more secondary -- so it sounds. the primary problem sounds more cardiac innervation signals to the heart getting messed up and thus, perhaps causing a rhythm disturbance..........well, maybe not rhythm disturbance, but a RATE disturbance (very slow heart rate)...........not sure, would have to capture it when it occurs..........

......anyway, what i'm getting at is if your heart is responding inappropriately to swallowing, than it would seem logical to address/treat the inappropriate response of the heart TO swallowing and not look into ways to prevent the act of swallowing so that you dont pass out. ....because essentially, feeding tube or not, you will still ultimately swallow (saliva), and your heart/innervation of the heart will still be the culprit to syncopal events...................

perhaps there is more to the picture, but from what you have described, i think the info flop provided seems like a very wise approach to investigate instead of the feeding tube approach....

good luck.

cardiactec.