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Idaho2790

Distinguished member
Joined
Dec 22, 2017
Messages
150
Reason
PALS
Diagnosis
01/2018
Country
US
State
Idaho
City
Leadore
I have an appointment at UCSF on Friday to change our the feeding tube since it is bleeding little at the stoma. I have not had a single day of a problem with the feeding. They set this at 1:00 and I was to see the neurologist at the ALS clinic right after. Got a call this morning from Interventional radiology. Since I can’t speak, my husband spoke to them. They want me there an hour early which is ok, but said that I won’t be through until 4:00! All the postings I have read say that this is a minor, quick thing! My tube is a dangle tube, G tube. It didn’t take that long when they initially put it in! Any thoughts??
 
It certainly did not take very long when my sister had it done. There was time before with registering and so on but the procedure itself? My guess is about 15 minutes from when they had me leave the procedure room until She was done.
 
Maybe the head clinic nurse could speak to them and get it sorted so you arrive and are first on the list. It could be that they haven't decided the list order yet and so just give you a standard arrive at x, be finished by y.
 
Thanks fo a quick reply! That time was what I thought! We Ned to be there an hour early to register. No problem with that!
I just have a problem with three hours for the procedure.
I will get hold of the clinic nurse. I know her email and will send a note to her
 
Is this the first change since the initial placement? For mine the doctor just yanked it out - the initial tube has a " button" that will " collapse" when the doc yanks on it - it hurts like hell because they have to pull on it pretty hard to collapse the button. You'll want to get a good painkiller in you prior to getting it done.

The subsequent changes have all been done by my wife at home. It is literally a 10 minute procedure.

That said I have a mic-key, not sure about other types.

Now if I could just find a way to make the trache replacement be as painless. You talk about painful, they literally yank the damn thing out of you throat. Now, I haven't had the luxury of a painkiller because the doc shows up early amongst other snafu's.

Anyway, changing the belly tube is no big deal. And I hope I didn't scare anyone from getting a trache, the advantages far outweigh the pain of getting it changed every 3 months.
 
Well, I was hoping that this would not be as painful as I had anticipated! I was nervous over the first Botox shots today, and those went well. Hardly felt them! I had convinced myself that tomorrow’s visit to the IR people would also be a piece of cake! I have pain pills but they indicated that I shouldn’t take anything by mouth or tube within 2 hours
 
My sister had a longer tube like you not a button like Brad. I don’t know for sure because I wasn’t in the room for the procedure but my impression was the change was not acutely painful. She said it wasn’t but she might have been being brave.
 
I have a tube and I can not see it being too painful as there was no pain when they put it in. I walked out after a 45 minute procedure. I have had the tube 4 years and no problems.
Al
 
My husband initially had the dangler tube which was changed to a mickey button in the doctor's office. I was with him and he did not have much pain at all. It only took about 10 minutes.

Brad-- I change my husband's trach tube all the time and he does not experience any pain at all.

Sharon
 
Stomas of any kind should not be treated roughly by 'yanking' things through them. :shock:
 
Now if I could just find a way to make the trache replacement be as painless. You talk about painful, they literally yank the damn thing out of you throat. Now, I haven't had the luxury of a painkiller because the doc shows up early amongst other snafu's.

QUOTE]

I switched to a Bivona TTS (tight to shaft) trach a couple of years ago. I had read that trach changes would be easier but was skeptical and my trach changes were not painful, just uncomfortable for the last rather hard push in. There was usually a little blood afterward but not always. I got the Bivona TTS and when I had it put in, I was startled when they put the vent hose back on. I couldn't believe that it was in so quickly and with no discomfort at all! I looked at my husband and he was as surprised as I was. Changes since then have been the same -- easy and no discomfort much less pain. Talk to your doctor and respiratory therapist about trying one.
 
The Gbutton Balloon should be deflated with a syringe prior to removal. There should be no yanking to collapse anything. The new button slips in and the balloon is re-inflated , usually with 5 ml of water. There should be no pain.
 
@ LeslieR it is the initial dangler tube they are removing and these do not have the balloon :)
 
Hoping your feeding tube change went well today, Kate
 
Just to clarify, my initial tube had a button, there was no bladder to deflate. The first change involved pulling out the tube with enough force to collapse the button. Subsequent changes have been a breeze and my wife handles it easily.

As far as the trache my wife and caregiver both replace my inner cannula without incident or pain. The issue I was referring to was replacing the outer cannula, which was painful.

Dianne, Thank you for the heads up and I will run the TTS down and see if my surgeon can use one.
 
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