At what point to get a Peg?

[SavoringLife]

We are exploring getting a Peg tube for my husband as his swallowing difficulties are worsening.

I remember reading somewhere on the forum (now can't find it) that there is a minimum FVC required in order to get the surgery. Does anyone know what that is? I recall it was somewhere around 50%?

Also, we welcome any other advice you might have in terms of timing so that we can plan accordingly. (ie. allow at least xx weeks for the surgery to be scheduled, etc.).

Thanks, everyone -- these forums continue to be a great resource for us.

 

[brooksea]

Hi Savoring. I think you are confusing the BiPap requirement with the PEG. But, you mustn't wait too long for the breathing to become an issue, as they will be unable to do the surgery. The sooner he gets it the better.

More knowledgeable people on this forum will help you out I'm sure! And good luck!

 

[Dave C]

Savoring, i echo what brooksea says about the confusion. My wife got the PEG due to weight loss more so than breathing though it was scheduled as an "emergency surgery" because her FVC was getting low to the point that they would not want to do general anestegia. Still she had some minor complications due to lower lung function so i would do it sooner than later. Just because he would have doesnt stop him from eating and drinking orally.
Good Luck.

 

[BethU]

Hi, Savoring ... the rule of thumb is to do it before he needs it. The better overall shape he is in, the easier the procedure. I continued to eat by mouth some time after getting mine.

Your neurologist should be able to guide you on this. Check with him/her first.

As far as timing the surgery, it will depend on your gastro guy's schedule. If you have an HMO, as I do, you may have to go from neuro's recommendation to primary care physician's authorization to gastro's consultation to scheduled surgery. The procedure itself only takes about 15 minutes, usually on an outpatient basis. The lead up can take a month or more, depending on the number of hoops you have to jump through.

You're smart to start planning early. If he's having trouble swallowing, I'd say the time is right to get the ball rolling. The immediate goal is to prevent him from losing weight, as it's easier to maintain weight than to gain it back.

Good luck.

 

[briana]

Savoring,
We just went thru this PEG determination process with my sister.
I think two studies play a big role: modified swallow study and FEES.
In my sister case her neuro was puzzled by the fact that my sister speech is almost preserved, but she has problems with swallowing.
He told us that usually speech is affected first, then swallowing is compromized.
What is your husband main problem: solids or water? chewing or choking?
Briana