General Anesthesia for peg insertion?

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CarolSue

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Dec 16, 2015
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123
Reason
PALS
Diagnosis
01/2016
Country
US
State
Kansas
City
Middle America
So there is the question, General Anesthesia for peg placement? Seems like I read somewhere that being knocked out is a big no-no. Someone help me understand. I'm supposed to have this done on Tuesday at University of Kansas Medical Center.

Thanks for your help,
CarolSue
 
That's what I was saying -- it's recommended to do in Radiology -- NOT under general anesthesia, which is an unnecessary risk unless there are pre-existing GI issues that rule out the radiology procedure.
 
I had twilight sleep like what they do for colonoscopy. It was only thing offered by my doctor. All went well
 
It does depend on your breathing, but yes you can have it done in radiology and it is far safer.
 
okay, so what exactly is the risk? My FVC is at 48 as of last week. Does being put out ramp up the disease?

Thank you!
CarolSue
 
I think that being put under is a risk for anyone even if you don't have ALS.

While having it done in Radiology is safer, many PALS have it done in Endoscopy.

Are you able to lay flat without the Trilogy?

My PALS had it done via Endoscopy in Sept 2016. His FVC was lower than 48 at the time but was not really using the Trilogy at the time. He was able to lay flat without feeling shortness of breath at the time. We took the Trilogy with us but they didn't need to use it. They did use something to put him under propofol that is very short acting.
 
I have investigated this quite a bit as I draw closer to getting my feeding tube. I am not a medical professional, but think I have a pretty good understanding of this stuff by now.

There are two ways to place a feeding tube. One, called a PEG (for something like Percutaneous Endoscopic G tube), is placed via an endoscope. To have this done you need to be sedated, likely with general anesthesia.

I have been told that with my low FVC that if I go under general anesthesia I stand an increased risk of waking up requiring a trach and a vent for the rest of my life.

The other way to place a feeding tube goes by different names depending on what part of the world you are in. The names I have heard are RIG and PRG. RIG is used in a lot of the rest of the world and stands for something like Radioscopically Inserted Gtube. PRG is the name used in most of the US and stands for something like Percutaneous Radioscopically guide Gtube.

The PRG is placed by an interventional radiologist and is done with light sedation.

With a PEG, my doctor says that I would get a feeding tube with a "rubber bumper" on the inside of my stomach. This makes changing the tube problematic because the rubber bumper apparently has to be pulled through the abdominal wall to replace the tube.

With a PRG, there would be an inflatable balloon (filled with water) inside my stomach. Switching out the tube is nearly trivial. Deflate the balloon, pull out the old feeding tube, insert the new feeding tube, and then inflate the balloon on the new feeding tube.

My doctor says I must start with a standard tube. After a few weeks I can change to another style if I want to. I want to change to a Mickey or Mini port as soon as I can.

My god daughter uses a feeding tube and I have become familiar with how convenient the Mickey and Mini are. My friend changes his daughter's feeding tube himself at home and has posted youtube videos of doing it. It seems very simple.

With my low FVC (23%), the doctors have been very, very concerned about doing a PEG procedure. The interventional radiologist is not concerned about doing a PRG procedure with that FVC (and based on a pretty thorough examination).

I encourage you to investigate this further before committing to the surgery. It took me awhile to figure out the names, ask the right questions, and then get a referral to interventional radiology.

Whatever you decide, good luck.

Steve
 
I had peg done in endoscopy lab with balloon bumper under twilight sleep. My Fvc is around 30.

HOW DOES TWILIGHT ANESTHESIA DIFFER FROM GENERAL ANESTHESIA?

The primary difference between general and twilight anesthesia is the degree of consciousness of the patient. In general anesthesia patients are put in an induced coma making them completely unconscious; resulting in the loss of control of reflexes and the autonomic nervous system. While under general anesthesia patients breath with the help of a ventilator as their normal muscular functions may become impaired making it necessary for breathing tubes and a ventilator to be used.

In contrast twilight anesthesia patients remain semi-conscious and ventilation is not required.
 
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My biggest fear is gagging throughout the procedure which for me would lead to a laryngospasm. The ALS Clinic that I attend say this Dr. does all there ALS patients. First I was told that I would have a choice of a spinal block or sedation. Then when the nurse called that was affiliated directly with the surgeon said that he uses general anesthesia. I'm confused...I think Ill just go for it the way it is scheduled.

Thanks for all the input,
CarolSue
 
CarolSue,

Of course, it's your choice, but know that you have the right to be "unconfused" before/instead of this procedure. As Steve notes, radiology is considered a safer bet for PALS generally.


Just because a clinic says "s/he does all our ALS patients" does not mean (1) it's the most current recommendation [we know in this case it's not] (2) things will come out well.


Surgeons who bill large amounts for the institution may receive referrals from the ALS clinic out of habit or directive rather than belief in that choice.


Best,
Laurie
 
I had mine done about four weeks ago by the radiologists. I was awake the whole time. Lidocane injection in my stomach, fentanyl to keep me calm. They were able to keep my head elevated. They did a G-tube procedure as opposed to a PEG procedure. Tube down your nose and into your stomach. Three plugs that pull your stomach to the. Surface and then the tube.
 
For what it is worth CarolSue, I had my Peg put in about a year ago and it took about a half hour and then I went home. an ALS nurse showed up that evening and showed us how to use it, and then a nurse showed up for the next five days to check, and that was it. No pain and no stress, all was very easy and now I use it twice a day with no issues.
Al
 
I just want to note that it is perfectly normal to experience pain after either procedure - some have pain for up a week. It is incredibly variable how much pain and for how many days, and yet can all fall within perfectly normal.

I hope you are finding a set of options that you feel you can cope with CarolSue.
 
My wife had hers done in radiology. She was only in the room for 20 minutes. No sedation just local.
 
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