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Anyone dealing with dysphagia? What helps?

Head & Neck Cancer | Last Active: Apr 18 7:44am | Replies (33)

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Profile picture for Sue, Volunteer Mentor @sepdvm

@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.

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Replies to "@br97 I also am having some long term effects of muscle atrophy and fibrosis/stiffness from neck..."

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

@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!!