Esophageal Feeding Tube Option

[Ciaran]

Hi,

I've been told it's time to get a feeding tube ... specifically a PEG tube. Not being one to make an important decision without considering other options I found online that an esophageal feeding tube (a.k.a. "neck tube") might be another viable option with trade-offs ... some appealing to me.

I need assistance finding more information from someone who has first hand experience with this type of feeding tube ... a PALS, doctor, caregiver, etc. would be helpful.

Here's what I've found online ...

. Opening for tube is in the side of the neck
. Procedure is short and performed by an ENT with local anesthetic
. After the opening is well-healed the tube may be removed between feedings
. No gastric juices can leak through the opening and cause irritations or problems
. This type of tube might conflict with a vent
. Finding someone who knows about this type of feeding tube will be difficult

I've asked many medical professionals about this type of tube and have found nobody knowledgeable on the subject ... a common first mistake is they think I'm asking them about a nasogastric tube (a.k.a. "nose tube"). I can only confirm the last bullet listed above. Any help would be much appreciated ...

C.

[CindyM]

Hi Ciaran and welcome to the forum. I am sorry, though, for the reason you have to be here. I don't have any advice to offer but this is definately the place to get first-hand opinions on just about any issue related to ALS. We have a lot of experienced PALS and CALS and they should be checking in soon. Regards, Cindy

[Al]

Hi Ciaran. To be honest you are the first person that I can recall asking about this type of tube. It might be hard to find experienced people with it.
AL.