Old 02-25-2017, 10:41 AM #1 (permalink)
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rose's Avatar
Join Date: 2008
City: Anytown
State: Maryland
Country: US
Diagnosed: 7/2008
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 2,892
rose is on a very distinguished roadrose is on a very distinguished road
Smile New non- balloon peg tube button!

Hi everyone, I've not been on much lately, and I wanted to share that I got a new low profile peg tube that does not have a balloon. The manufacturer does not state specifically anywhere in their literature (that I can find) how long it is supposed to last, just that it is potentially significantly longer than a balloon type. However, I found reference to it on some university hospital website (but I can't remember which one) that three or more years is a realistic expectation.

It is no more uncomfortable to place, or remove than a balloon peg due to the clever way the internal bumper deploys.

I wanted it for a few reasons, among them the difficulty getting Medicare to cover replacement peg tubes unless placed by my doctor (which in turn means placed at a hospital) or purchased via a DME. But, I don't have a DME because I make my tube food instead of using formula.

The main reason, though, is ever since I've had a low profile button type peg tube, regardless of the brand, when my stomach is empty (which is frequently) and especially when I feel hungry, the peg tube would turn around on its own volition, and get sucked down into my stomach so tight I could barely turn it, then it will pop back up, sometimes even with an audible popping sound!

The only thing I could find when I searched online, was that others who experience this, and switch to a non balloon peg tube, no longer have the problem.

My doctor had never seen this happen, I actually sent him a video, which he in turn showed to his other gastroenterologist friends, who also didn't know what to make of it. So, maybe its a kind of rare phenomenon.

I talked about this once before on the ALS forums, and Tillie said that the Bard button didn't have a balloon, and did not require sedation to replace, and it would last a whole lot longer than balloon type buttons. That is what started me looking into this option.

Instead of going with the Bard, though, I got the AMT Mini One "Capsule" non balloon button. It uses the same feeding sets as the regular Mini One (and could use Mic-Key feeding sets too, as they are compatible).

Getting the new button took a few months to accomplish, but I finally got it this past Thursday.

Right before I was scheduled to have it switched out, I had a bit of drama with my existing button, so even though I'm just adding the link to the short post about the new button, you might want to go back and read the last two posts leading up to this one too. (there is a listing over on the side of page showing recent posts).

I will eventually get a more detailed review up about this type of peg tube, but I was pretty wrung out after the travel involved coupled with no sleep... you guys understand!

Here is the link: I got my new non-balloon button! | Tube Chic

For those of you who have a peg, or care for someone who has one (or are just interested) you can subscribe to receive email notifications when there is a new post. It won't notify you if there is more information added to the permanent article section (tabs for this are across the top of any landing page) just new posts. There is a place on the right side of any page to sign up for email notification. No need to enter your name, just your email address.
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affected (02-25-2017)
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