Interventional radiology vs surgery for PEG

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Idaho2790

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Joined
Dec 22, 2017
Messages
150
Reason
PALS
Diagnosis
01/2018
Country
US
State
Idaho
City
Leadore
It is becoming apparent that it won’t be long before I will need a feeding tube. I find the physical aspects of how they insert it, but nothing from those PALS who have actually had it done. It sounds very uncomfortable to say the least. Am I just getting squeamish over this? I have no problem using it, but sounds like I will need to go through this procedure every 3-6 months!
 
The replacement is no big deal. There is often? Usually a fair amount of discomfort for about a week after the initial procedure but replacing it is not the same. The moment of the change may be uncomfortable but after a replacement you are pretty much good to go.

Full disclosure, I do not have a tube yet but I am FALS and I accompanied my sister when she had her tube replaced
 
I’m nervous because my husband had a feeding tube three and a half years ago. It was put in during a cancer surgery so he didn’t know if it hurt or not! They took it out and he has had constant problems with infection, etc. Had surgery in January to correct a fistula that had formed and the result is constant diarrhea and it is still draining, etc. This experience has made me very reluctant to have the tube put in at all, let alone go through the pain and stress that follows. This was done at UCSF so we felt we were with the experts. This is also where my Clinic is
 
No one can promise you won’t have problems but most people have radiological interventional insertions ( rigs) and most do well

If you want a tube the procedure will be easier for you if you do it sooner. The longer you wait the more debilitated you become and the harder it is to recover. My sister waited far too long ( she admitted this later) but she was very glad she did it and just wished it had been sooner.
 
I’m sure I will bite the bullet and have it done! And everything I read says to have it done sooner rather than later. Thanks for reaching out to reassure me...I do appreciate it!
 
I don't know any PALS that have their feeding tubes replaced every 3-6 months. Usually around every 12 months.

If you nose around the forum here you will see lots of PALS talk of their experience both with the initial placement and changes either of dangler tubes or buttons.

It is a simple procedure, but there can be a lot of pain and complications. As Nikki says we can't guarantee nothing will go wrong, but we have found that the best results are most common when the tube is placed early in progression while you are still quite strong and resilient.

I think you should have a good talk with your doctor who should go through everything about how they will handle the procedure and really put your questions and fears out there so they can be addressed by the person who will be doing it.

Your title seems like you were asking about the pros or cons of having the tube inserted as a RIG or PEG but maybe that's not what you were asking so I left that as maybe it's not what your concern was about?
 
That was one of my concerns. My husband had a PEG. So thought maybe the RIG was a better choice. But when I looked at the procedure, it sounded so awful that my concerns started growing. Right now I’m bulbar and my limbs are fine. The Emg from January shows only a muscle issue with my tongue. However, my swallowing and choking seems to be a problem that grows nearly daily. I do appreciate the advice
 
I had mine done by RIG about 18 months ago. If you can survive a root canal, this is about the same, only faster. I think I was uncomfortable for about a week after, about a 5-6 on the pain scale. The procedure was about 15-20 minutes in and out. There were a couple of times it got a little intense for a minute or two, but mostly just feels weird. Afterwards just soak the site in saline every day for 15 minutes and flush once a day if you aren't using it right away.
Vincent
 
I just passed the one year anniversary of having my tube placed by PEG. The pain level I had was about 7 at the highest, which occurred about 12 hours after the procedure. I have had no issues with the tube since it was placed. You do need to wash the stoma daily and give the tube a spin at least weekly. I suspect that the first replacement will be discussed with my PCP in June.

There is a facebook group for feeding tubes called Adult G Tube Feeding that has a lot of good information in their file location. Might also want to search for Tube Chic, which is another site.
 
Thanks for replying :)

I think if you are concerned about being awake for the procedure then hopefully a few more who had the tube placed by RIG can tell you how it was for them and that may help you.

The method of insertion won't make any difference afterwards. If you do not have any breathing issues then you could have the tube inserted as a peg with that sedation. But I would do it now regardless as you are likely to heal best regardless which procedure when you are at your best.

Hope you get some good info on this thread to help make the decision well :)
 
This forum is a lifesaver for me. Having been diagnosed just six weeks ago and having a personality that hits everything head on, it is wonderful to be able to get answers and advice from those in the same boat I am! I hate wondering 24/7 about something. It is even worse to try and discuss it with my husband. No point in worrying him too. Hearing from others who have done this would be great!
 
I was very apprehensive before getting my peg done. For me, I'm glad I was sedated even though the RIG is considered a bit safer for us. I was stubborn and waited too long but fortunate to have no problem, but doing it sooner is definitely smarter.


I had mine replaced after 5 months only because I wanted a button. That was quick and easy too.

you will be glad to get it over with and it is a life saver!
 
Trying to get some questions answered regarding having a feeding tube . As I have said before, my husband had one following cancer surgery several years ago. Although he was on Medicare, it was necessary for the doctor to prescribe the formula as the only means of eating. They would not cover the feedings unless he was totally dependent. Is this the same with ALS. Do I need to be unable to eat anything orally in order for the bags and formula to be covered? As Carl improved it became quite expensive to get the needed formula and bags and that was only for a short period of time
 
I was able to get the supplies through Medicare prior to needing it for all nutrition. The Dr just has to be careful with the wording.
 
I thought the rules was needing more than 50 percent of nutrition via tube for medicare to pay?

You don’t have to use it for food if you don’t need to ( though if you are losing weight you probably do need it).

There are other options like blending your own food and high calorie smoothies. You will find recipes and suggestions here
 
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