g tube surgery

[tinyandme]

Been looking online for any proof that the actual surgery may speed his progression inadvertently. All the articles dance around it. I'm worried. Nothing we can do about it..needs tube no matter what. Progressing fast anyway, breathing 20% last check. Anyone seen a vast decline in their PAL after? I think I read a comment once about someone in for a simple tube insert and never same after..

 

[dalvin]

I think that a lot depends on where their breathing is at at the time of surgery. Mine was at 60 and had no problems. An over night stay and went home

 

[Santa joe]

Feeding tube was placed in January 2013. No problems and he has maintained his healthy weight at 230lbs. Good luck.

Debbie

 

[Nikki J]

Sister waited too long had pneumonia after BUT after recovering has gained weight and doing well. Survived emergency surgery under general anesthesia and came back from that. Would have killed her for sure if she had not regained weight and some health. She is progressing with ALS but less fast than those last couple of months before tube. Her breathing is and was VERY compromised.

 

[tinyandme]

Thank you!

 

[lgelb]

Tiny's CALS, I assume you are using "surgery" when you mean an interventional radiology procedure? The latter is best for PALS. It is important to meet the radiologist who would do the procedure and make sure you are on the same page w/ VPAP, pt positioning, etc.

 

[affected]

My Chris had a PEG which means it was done endoscopically rather than radioscopically.

He chose a general rather than local anaesthetic but we had full faith in both the anaesthetist and the gastroenterologist performing the procedure.

I know that some here have had it performed radioscopically due to anaesthetic issues from low FVC. Chris still had reasonable FVC at the time. There are some good threads here about the differences if you search maybe in the PEG section, I haven't read much in there lately but I do remember some great stuff.

However, he was already dehydrated (they were great, on arrival they turned to me and said, should we put a drip in? I said YES PLEASE he is dehydrated before he started fasting), he was already in starvation mode as he had been eating so little and only weighed 54kg.

I believe strongly that if you decide you will have PEG placed, do it EARLY. Do it while your breathing is OK, while you are still in reasonable condition and weight. I really feel your body will cope with the minor surgery best then, rather than waiting til you NEED it.

 

[tinyandme]

Nope Igelb, surgery. PAL can't tolerate bi pap and can't breath lying down so they couldn't do it in radiology sadly. He's very claustrophobic, we've tried everything we can think of but he can't keep the mask on more then a few minutes. Hence my worry..anaesthesia with 20% lung function? Seems like a bad, bad idea

 

[MaxEidswick]

there's an excellent discussion on this on fb Living with ALS ~ For PALS ONLY group -- you have to page down a bit ...

 

[tinyandme]

I'm not a PAL though..will you let me join? Hayden is a rather not know kinda guy.. :/

 

[MaxEidswick]

>I'm not a PAL though..will you let me join? Hayden is a rather not know kinda guy.. :

not sure, but don't think so ... can't hurt to ask

 

[lgelb]

I would rather not have someone like that on an operating table, either. Why can't he get the necessary conscious sedation in radiology? Just start an IV. Several here have been sedated for the PRG, I believe -- perhaps they can chime in.

Here is a summary of tube procedures.

 

[lgelb]

Actually, this is a better summary for this thread. Instead of an NG tube/swallowing a contrast agent for imaging, he can have an angiographic catheter before the procedure.

 

[tinyandme]

Not sure what happened yet but no g tube today. They drugged him, intubated, cut him..but no peg. Now we're admitted, Haydens out cold, and i'm waiting on the Dr to finish his other surgeries and let me know what happened. What a day! Good grief..

 

[affected]

oh hell, that's crap

thinking of you both, please update us when you can, I'm hoping all is OK