Update on RIG v PEG question

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dianepage

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After getting a big runaround for RIG at a more local hospital ("You have to have an abdominal CT scan to schedule an RIG procedure." "My husband can't breathe lying down for a CT scan for 30 minutes due to ALS. Can we meet with doc to discuss?" "You have to provide the CT results before you can meet with the doctor." "Could the scan be done in the hospital? The radiology center suggested that." "That's not my department. I don't know anything about that." "Can we ask the doctor about that?" "You have to provide the CT results before I can schedule you with the doctor." Grrrrrrrr) we are going with a PEG at the ALS Center teaching hospital. We are reading that PEGs have fewer complications but are more dangerous for patients with under 50% FVC like my spouse, I'm not sure why. Any comments on the different procedures from those who experienced them?
 

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I'm a little confused too.

Are you having the peg inserted at the local hospital or the ALS center teaching hospital?
I would have thought the ALS hospital would know how to deal with CT and not being able to lay flat etc? If you are going with the local hospital it sounds to me like you have to just hope they can cope with the specific needs of an ALS patient, and it is often the case that the don't.

Can you talk to a doctor at the ALS clinic or can your own doctor find out or order things done for you a certain way?
 

dianepage

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Thanks so much for the info, gosh if only we had time for a quick trip to Canada! I am glad Joel C's procedure went so well.
We are going to the ALS Clinic hospital this next week for the PEG as we are running out of time to look for alternatives. Every hospital/surgeon has different protocols. We all make the best decisions we can in the circumstances we are in, right?
My mother, in the most awful coincidence imaginable, died of PLS in 2004. When she had her PEG, we had to be super vigilant to keep telling various hospital staff that she could not breathe lying flat. In fact, they called us into the recovery room to tell us to encourage her because she "wasn't trying hard enough" to breathe on her own. We had to be very assertive and insist she needed to be upright.
 

zoohouse

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Tim's FVC is 37% and he did very well with his PEG insertion. Radiology inserted it, with local freezing and only a whiff of anti-anxiotitic (to relax him). They managed to do it with his head raised.
So this is how it went. Barium- 1 litre taken the night before procedure, so that they could visualize the bowel. He fasted after midnight & a small NG (nasogastric tube) was inserted before the procedure. Air pumped into the stomach through NG tube to make it a larger target, and push the bowel if up that high away, and move the stomach closer to the abdominal wall. Radiography was used to ensure that there was no bowel laying over the stomach that could be punctured. Local anesthetic was used to infiltrate the area where the tube was inserted, so that the site would be frozen. Tube inserted and tacked in place. Stomach deflated, NG tube removed, and a short recovery observation time started. Tim said that it was relatively painless, and he didn't find it too difficult to breath in that position. So far he is doing very well, as long as I don't forget about the tube and bump it. He was quite sore the first day, but improving quickly.

Paulette
 

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that's great new Paulette, I hope he continues well!

My PALS had a lot of pain the first week after the insertion, but then it settled fast.
 

BrianD

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Tim's FVC is 37% and he did very well with his PEG insertion. Radiology inserted it, with local freezing and only a whiff of anti-anxiotitic (to relax him). They managed to do it with his head raised.

<procedure details>

Paulette

Paulette,

The procedure you described is actually a RIG, and not a PEG.

PEG vs. RIG have the same end result, namely hole in the stomach to the outside world. That is the G for Gastronomy in both the abbreviations.

PEG stands for Percutaneous Endoscopic Gastrostomy – inserted via a telescope down the food pipe.
RIG stands for Radiologically Inserted Gastrostomy – inserted using X-ray guidance after having barium placed inside the stomach.

I was "lucky" enough to attempt both procedures.
Http://www.alsforums.com/forum/general-discussion-about-peg-s/18178-feeding-tube-but-not-peg.html

Great reference article.
Http://www.oxfordmnd.net/information/guide-to-peg-rig
 

zoohouse

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You are absolutely correct BrianD, I just have a horrible time with acronyms. We are home now, and Tim has very little discomfort now even with repositioning.
 
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