Anyone dealing with dysphagia? What helps?

@br97 I also am having some long term effects of muscle atrophy and fibrosis/stiffness from neck radiation 13 years ago. I have been researching and find that people have benefit from red light therapy, which is a kind of low powered laser. Some are using a device at home. Swallowing therapy by a specialist in speech therapy is helpful to some people. These long term consequences of radiation are not really more than touched on when we initially had this therapy, but at that point surviving is the primary issue. I thing nowadays there is a more proactive approach but the larger medical institutions. I am seeing my medical team at Mayo in Rochester MN next week and we will discuss this. I am certain that they will have more treatments available than we have locally in NW Ohio. I think your second opinion is the best choice because tracheostomy is a huge step. Traveling to a teaching hospital or large cancer center may be worth it for what they can offer.

@sepdvm hear you - had diagnosed and treated - nasopharyngeal carcinoma IV almost 20 yrs ago. At that time, it was just going by what the doctors recommended, and going through the ordeal.
The thoughts of 'after effects of radiation' did not come into play, and now in mid 2020 - I am having and having to live out the rest of my life with these late effects of radiation - issues with: swallowing, speech, drooling, severe neck fibrosis, and most recently - to add to the list - misaligned vision - left eye affected by radiation to my left side!!!
And to top it off -- these are all invisible disabilities - and it is really frustrating when approaching or trying to communicate with anyone - because I do appear normal !!
Lifestyle has taken a complete change!!

@sepdvm I would really be interested in what Mayo has to say. Would you mind sharing?

Hello @josk . It is discouraging to keep adding new problems so many years post treatment. I believe it is better than being dead from cancer, but we deserve a break. I am using an infrared device that was designed for knee pain but it fits nicely on my neck and not so nicely on my face. I does help with neck mobility and also my facial muscle atrophy/fibrosis. ( The Willo MD which then was marketed in a new form Willow Curve and is no longer available. My husband was an initial investor.) There are many red light therapy devices available and others have had success with home treatment. Finding a therapy center skilled in head and neck radiation issues is a challenge. Have you had any luck looking into PT in your area?

@thare A disappointing visit, and that hasn't happened to me before at Mayo. New doctor, mine is retiring, and certainly not the bedside manner I was used to. I felt rushed, his only response to my questions about fibrosis and atrophy was to suggest referral to an associate who specializes in facial reanimation. Could not schedule with him as he is booked out, but a few days later I had an appointment show up on portal for 3 months out. I didn't come away with any new information unfortunately, he only answered questions about my BAHA issues.