RIG vs. PEG

[MupstateNY]

I'm so confused. The clinic director's order just says, "feeding tube."

I want RIG.

For some reason, I've been told to drive 90 min each way, to get a CT scan. I'm concerned that this means I'm queued up for PEG.

Also, I don't understand why, if I have to get CT, I can't get it locally and then send a disk.

If the imaging is used real time for RIG, why do I have to get a CT?

The nurse called me back but she didn't know anything. She said I can talk to the doctor on Jan 31. But I'm supposed to go get the CT on Thurs.

I guess if I talk to the Synapticure neuro Thurs morning, then she can help me figure out whether to cancel the far away CT.

I find the traveling exhausting.

They told me last week that after the CT, they're going to tell me to open my mouth and say Ahh, so they can decide something or other.

 

[affected]

The peg is done endoscopically. A CT is maybe being done to check anatomical structures to ensure they can do your tube as a RIG.

Remember PEG and RIG are the method used to insert the "feeding tube", they are not the tube, however most people tend to call it a PEG because there was a time, not that many years back, when a RIG was rarely done.

 

[rmt]

I think , the key is that you want to have the tube placed in Interventional Radiology. My husband was an interventional radiologist and placed so many feeding tubes. When he had his tube placed, they didn't do any imaging before hand, but they were able to make decisions on the fly to get the tube placed even with his challenging anatomy (something about the location of his colon or something). Honestly, if they had done a CT before, it probably would have made it more simple on the day they did the tube. But my husband waited so long and it ended up being a bit of an emergency procedure. So they did all the imaging the day of the procedure, and that ended up OK....barely. The IR guy doing the procedure was a good friend and colleague, and went to extreme measures to get it done that day. You will be much better off doing imaging before hand to make sure it goes smoothly when they place the tube.

 

[lgelb]

Yes, RIG is an interventional radiology procedure. But orders have to go to a clinical department, so if yours just says "feeding tube," why not just contact IR and act as if? But I would do that before the CT because they would be the ones using the CT, and besides you want to make sure you are comfortable with them. The sequence you have outlined makes no sense to me. If IR says you don't have an order on file, that would be important info as well, obviously.

I have not seen that most PALS get a CT in advance and I would certainly ask why the study couldn't be done locally since the travel is hard. I would also want to know if the study is with or without contrast (that info should be in your portal) to make sure you have a recent eGFR value that is required for contrast, or that point of care testing is available. That might also affect your arrival time.

If the study is just to confirm normal anatomy, all the more reason that you shouldn't need to travel for it. Any test that exposes you to radiation, ALS or no ALS, and that you are certainly going to be charged for, you have the right to know the "why" and optimize the "where" if/as clinically appropriate.

 

[KimT]

If a CT is done just to determine anatomy, you should be able to get it locally without contrast. I see no reason why you can't have it placed by IR and I would go that route, if necessary. At your stage, probably both methods are safe but why not get the easiest one, if possible.

It does seem like your clinic, doctors, and orders are pretty convoluted.

By the way, Laurie's reference to eGFR just makes sure your kidneys are okay as relates to contrast, if you ever need contrast.

I've had MRIs and CTs with contrast and they didn't check my kidney function until the last one which was an MRI of my lumbar spine two years ago.

 

[Tomswife]

I dont think PALS should fear a Peg endoscopy. You just want to know why not RIG procedure. Tom had a PEG (inside to out) because he could not recline. The bulbar weakness made him higher risk and not a candidate for RIG.
The procedure did not take long.
And, he was perky and walked to the restroom one hour later.

 

[MupstateNY]

Thanks, everyone. This morning I was given a telemed with the director. She said that the IR (intervention radiology) has a strict policy, no outside CTs, no telemed. I proposed to get the CT locally and do telemed with IR (where they explain the procedure).

She said that they will do RIG if they can.

Today I learned, and I think everyone who joins this forum should be warned, some doctors will not be happy with you if you reveal that you have found an online ALS forum that you find very helpful.

Thursday is my first Synapticure appt and I am psyched.

 

[lgelb]

I am glad Tom did well with the PEG, Kathy. Most PALS incur fewer risks with the RIG but his was a special case.

Mupstate, online forums have a bad rep with docs generally because they can do a lot of harm with misinformation about what to do, take, avoid. Here, we try to err on the side of non-harm, as hopefully you have seen.

 

[MupstateNY]

Indeed.

I think I'm a critical reader and can be trusted to check multiple sources, weigh them, etc. She just never bothered to get to know me.