My dad recently got a feeding tube. Feedings are going well. He was diagnosed with ALS one month ago at age 71, symptom onset one year ago. He was in the hospital for 10 days getting tests run prior to his diagnosis. He was admitted for shortness of breath. He went under general anesthesia and was intubated while in the hospital to get an MRI. If his bulbar decline was taking small steps backward, the general anesthesia (with intubation) represented a very large step backwards on his decline. This is apparently common with ALS patients going under anesthesia. Hospitals are quick to intubate patients for any procedure if they have any kind of breathing problem (they think it is safer). Beware of this if you are a PALS or CALS. We noticed the respritory decline after the MRI and opted to have the spinal tap under local with his biPAP machine on. It went easily without incident. They would have intubated him again for the spinal tap if we would not have objected. My dad cannot lay flat without his biPAP. Upright or with BiPAP he is okay. After 10 days and every test imaginable he got the diagnosis of ALS. Swallowing was becomming a greater problem. My dad's bulbar decline seems to be moving faster than his limbs. We talked to his Neurologist about a PEG, and he referred us to the Pulmonologist, he had a concern that if my dad was "put under" for the tube placement, he may not be able to get off of the ventilator. The Pulmonologist agreed, but said it was a calculated risk we should strongly consider taking. He wanted to send my dad to a GI doc to discuss tube placement. I had done some research and saw a few articles about PRG's (radiographically placed G tubes). I asked the doctor about this and he did not know of any interventional radiologists doing this in the area, but agreed that it would be a good option if available. I found out that Kimberly Clark makes a radiographically placed G tube kit and contacted the rep for the area (his email was listed on their website). He told me of two radiologists in the area with some experience doing these (although not a lot). I relayed the names of these doctors to the Pulmonologist and he scheduled the procedure the following week. My dad had to drink two cups of barium the day before surgery (it was thick and chalky like milk of magnesia, but no choking issues). The procedure was done outpatient, and he came home that afternoon with a drain and minimal discomfort. We went back the next day for a quick x-ray to ensure that everything was in place and nothing was leaking (no issues). He began feedings the following day. He took only one pain pill following surgery. He had lost 66 lbs prior to the tube. He has only had it a week, but he has already gained 3lbs back, and feels better after feedings.
One added benefit from the G Tube is that he can release air in his stomach that builds up after using his bi-Pap as well as occasional eating and drinking. Dad swallows a lot of air trying to get things down. He used to go to the bathroom often just to release gas, now he can just uncap his tube and he gets instant relief. Taking meds have also gotten a lot easier.
Sorry for this way too long post. I hope it helps some. There is a good YouTube video on this PRG procedure, which is actually very simple. Cheers.