PEG procedure questions

[MupstateNY]

I called to schedule my PEG today. They said they want to do the CT themselves (90 min drive each way). Then they want to have me open my mouth and say Aahh so they can see how open my airway is (or isn't), and based on what they see they will score me (mallampati), and that plus my "history" (not sure what they're referring to) will determine whether general or twilight. I felt a little alarmed.

The clinic director didn't want me to have a PEG yet -- she said, since my Pulmonary Function Test was my first, she didn't want to assume it was accurate (66% and 60%). (I think it was accurate -- the tech said I got the hang of the test faster than other people -- I thought maybe it was from the voice (singing) lessons I took in my early 20's.)

Then she said if I really want it she will order it. I discussed with my primary and then sent portal msg "yes, please."

Also I said I wanted to do it at Guthrie 40-min drive and usually Guthrie is quicker with everything -- sometimes I can get next-day appointments with specialists. She said, at her institution (big regional hospital) they would know what to do in the unlikely even something goes wrong, due to their extensive experience with ALS.

Apparently I can't get it quickly at the regional hospital.

Can you guys weigh in on these things, please, based on your experience? I promise not to blindly follow what you say, just use that information to ask good questions.

I wanted to have the PEG in place before starting Relyvrio (delivery scheduled for next week).

 

[Tomswife]

I think itbus good to have peg for water and Relyvrio.

It is considered a risky procedure, even though they do them often.

If it were me, i would pick the hospital that does them often. We really felt we were in good hands at the center for diseases at nypresby. The doctor wasca gi specialist with experience doing these procedures.

 

[Mary2]

We didn't want to go to Atlanta to have the procedure done. I called the nurse at the ALS clinic near us and she gave me the name of a general surgeon whom she said the clinic used for PEGS. I couldn't find any indication that RIGS were done in this part of the state. I am not even sure Emory does RIGS. We might have had to go to the Mayo in Jacksonville and we weren't going to do that either.

So a general surgeon did a PEG and we have had no problems. We are lucky because my husband was already on Bi-Pap and in a PWC when he had the Peg done. Emory did not diagnose my husband with ALS right away and he was fairly far along before they changed the diagnosis.

So your situation sounds much better. I wish we had a mic-key. Apparently that is button instead of a tube that hangs and needs to be secured and can be pulled on by accident.. Maybe others can tell you more about those.

 

[affected]

You would be better having it put in as a RIG not PEG. But you are very early since diagnosis and breathing is pretty good so if you are happy to go ahead then have it done this way. I guess a big part is if you feel happy with the doctors you are going through, then that is half the journey.

 

[MupstateNY]

affected, can you help me understand your suggestion for RIG instead of PEG? I thought PEG was to be preferred when one is still a candidate.

 

[affected]

RIG is considered better for PALS unless there are anatomical reasons for needing to be done endoscopically. It used to only be used if a PALS was very compromised with their breathing and needed their bipap during the procedure. That was years back.

 

[lgelb]

RIGs typically require less sedation (no one would be suggesting general anesthesia as you say was mentioned in your case), therefore having less potential effect on breathing, and because they are done in radiology, usually less procedural time is needed overall. It is also a simpler procedure from the "outside in."

However, there are financial incentives to do procedures upstairs rather than down, short story.

BiPAP can technically be used either way, but is typically better accepted in radiology where there is not anesthesiology territory.

 

[KimT]

I’d get RIG, if possible. That said I had a low FVC but strong breathing muscles and I’ve had a colonoscopy and endoscopy since my diagnosis. The best solution is the one you feel comfortable with.

 

[MupstateNY]

I will request RIG, thank you all.