Hello! First post on here. Here is a summary of my background:

Carl completed chemoradiation therapy for a T3, N1 right base of tongue squamous cell carcinoma on 08/25/2014. He was treated with HD cisplatin and XRT.

SLP:
When muscles in our throat have radiation, the radiation causes scarring (also called fibrosis) to build in the muscles over time. This continues to happen for the rest of a person's life, long after their radiation treatment is done. The more scarring that occurs, the weaker the muscles get. This is why swallowing gets worse over time for someone who has had head and neck radiation.

Your swallowing muscles are very, very weak and stiff so when you try to swallow they can't push the food into the esophagus. It gets stuck in your throat and then goes down the airway. The airway is essentially "the path of least resistance".

Current prognosis:
Your problem is with the muscles above in your throat. Your issue is with the muscles at the back of your tongue and the muscles in your throat. They do not move well and do not have much strength due to radiation induced fibrosis. Unfortunately, there is not a surgery or a medication to fix these muscles as we talked about when we saw each other in person.

I am stuck on a g tube now 100%. Was told to avoid food and drinks by mouth due to aspiration risk.

Does anyone else have this condition and has anyone had any luck with a procedure to fix this?

Once this has happened you are where you are. I am in the same situation. I’ve been on a permanent PEG feeding for five years. There is no treatment for this situation. Accepting things and ultimately getting the right low profile PEG, and then learning to blend your own real foods to bolus syringe put into the peg is the best long term idea. You don’t want to live on pharma company junk that isn’t ideal nutrition . I miss eating normally and the pleasure derived from it. But if this is the situation, finding acceptance and learning to do this well you can get on with an otherwise normal life. I’m eating healthier than I have in my whole life. It’s improving other aspects of my health. You have to become a student of nutrition for a while but once you have a system down this is fast and simple. There are people here that can help you get started when you are ready. You will have one type of peg first that dangles in front of your stomach. But in a couple months after the stoma has healed properly, you can swap that out to an inconspicuous button called a mic key, and life gets simpler.

Trying to continue drinking and eating normally will ultimately lead to silent aspiration of liquids and foods into your lungs. This will cause pneumonia. While that can be treated with antibiotics, if it happens repeatedly it will become antibiotic resistant and can kill you. You need to accept the cards you’ve been dealt and learn to do this in an intelligent way.