Referred for PEG insertion

[Scotiaspirit]

I have had several serious choking spells in the last couple of weeks and my swallowing has taken a sharp decline in recent weeks and the swallowing clinic has referred me for surgery to have a PEG inserted. I am told it should happen within the month. I was hoping to have this put off longer, but after a pretty scary and life threatening choking episode, I know that the time has arrived. I am a bit nervous due to esophageal surgery I had back in 1989 had alot of irritation from drainage tubes coming out of my abdomen, and I hope my body does not have an inflammatory response to the PEG tube when it is inserted.

Had my second opinion consultation, and the neurologist dx me as limb onset starting in my right foot and feels symptoms started 2 1/2 years ago.

Hoping my surgery goes smoothly without complications.

 

[lgelb]

I hope the same thing, Scotia. Are you having it done by an interventional radiologist?

Best,
Laurie

 

[Vincent]

I'm trying to convince my GI doc i need to get this done before I need a radiologist. The neuro referred me for one, he wanted an SLP report. Got that. Now he wants a Respirologist report. Maybe we can have a race.
Vincent

 

[soonerwife]

Good luck Scotiaspirit!

My PALS had it done last Thursday. It went well. He took pain pills up until today but said the pain wasn't that bad. I hope yours goes as well as his. He had the PEG and it was done by endoscopy. They used propofol to put his in because it doesn't last long.

 

[Duker52]

I had mine put in about three weeks ago by a general surgeon who my neurologist recommended. The surgeon had placed g-tubes in hundreds of patients, some of which had ALS. Fast forward to a week ago yesterday when he took the sutchers out of the outer button which was holding it in place on my stomach. On Thursday the entire tube fell out so off to the ER. This time an Interventional Radiologist put in the new tube and it works 100 times better than the original. Moral of my story -- use an Interventional Radiologist, like Laurie suggested. Bill

 

[lgelb]

For those with physicians less familiar with the literature, most published guidelines on ALS/MND care consider PEG and RIG equally acceptable options (let me know if you need help finding some for your country) but some literature also suggests that RIG is less risky and more likely to succeed particularly with significant respiratory compromise.

A reminder that using BiPAP during radiology procedures is recommended if you have it.

But if you end up getting a PEG for whatever reason, I would ask the anesthesiologist to provide minimal sedation for the minimal duration, and document why.

 

[Scotiaspirit]

Laurie, I was told that the surgeon doing the PEG surgery for me has done thousands of these so far, and his speciality is GI Surgery on people with neurological diseases, and talking with other local ALS patients who have had it done before me, tell me it is completed quite quickly pending no complications. He is the head of the neuro gastointestinal surgery dept here in Halifax. I believe they told me his name is Dr Lebbin (sp?)

I will have a good talk with him about it, as I have read the success rates between both procedures and it appears that there are less complications with the RIG as you mentioned. I had gastro-esophageal surgery back in 1989 with a large incision scar in the center of my abdomen from the navel to the sternum. Not sure if that will play a role in what choice is made either.

 

[Scotiaspirit]

Vincent, the clock forces us all to race with this fracken disease. It seems that any period of calm is very short lived before another crisis or intervention comes upon us. After reading the success rates on a site that compares as PEG, RIG and PIG, it seems that the PEG is the one that ends up with the most of the complications. Good luck with yours and I expect it will be the best part of a month or more before they finally get a bed booked for me to do it.

 

[Scotiaspirit]

As a followup, I see that both procedures are done here in Halifax, so I will definately be talking to the surgeon and swallowing clinic in more detail about it when they call me back with more info on the surgery date.