Gloria

Alex and I had a very similar story and Alex had his PEG for over 12 months. The SLP became his best friend. 3 years on, his food consumption is limited to thick soups but improvement continues...

Like your husband, Alex had a "shelf" at the back of his throat where his formula and gunk was pooling. My understanding of what the SLP told us is this: In Alex's case, the sequence of perstalsis which starts at the back of the throat was out of order or weak in places causing the pooling and choking when the "shelf" (which was the bit where the normal peristalsis action was failing) finally let go of its contents. The choking occurred when the epiglottis hadn't closed properly (still swollen) causing the gunk to go into his lungs.

With exercises and weekly visits to the SLP (and cutting the RO out of the loop as he appeared not to understand the issue) Alex improved. The "shelf" is still there, but his muscles have strengthened and he is able to swallow hard enough to push the food past it allowing him to at least swallow thick soups and small soft items of food. His epiglottis also improved and now mostly closes (took at least 6 months) and choking is less of an issue although still happens if Alex doesn't concentrate on what he is doing. This means that when Alex is eating, he needs to concentrate so I don't talk (which kills me ). We hope that one day, swallowing will once again become a habit and dinner conversation will resume.

I guess my point is that maybe things are still healing and what you can achieve now is still in process. I would also suggest you make the SLP your new best friend and see if continued swallowing exercises can help.

Our RO was not helpful and made a comment along the lines of "oh here comes the patient who has had more barium meals than anyone". When I corrected him and told him that Alex had only had 2 - 1 at the end of chemotherapy and before chemoradiation commenced (and the recommendation was that he stop taking anything by mouth) and the follow up 1 to see if the problem had resolved enough to allow for swallowing fluids, the RO replied that this was 1 more than the other patients got!!! This made no sense to me - how could one possibly know if the previous issue had resolved without a follow up test?

I voiced my concerns to the SLP when we saw her the next day. She was unhappy that the RO had said this and told us that her report stated that Alex had damage which required support (exercises) and continued follow up (tests). Apparently, the RO didn't understand this. Exit RO for this particular problem.

Alex loved his RO but not for anything other than radiation - he turned out to be unhelpful with any rehabilation issues and I remember the last time we saw that particular RO at 12 months, he DID admit that they were the "terminators" and others were better equipped to do the rebuilding. This gave Alex permission to seek help elsewhere. He also learned that I could make his life a whole lot more difficult than his RO could, and Alex finally got the message