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Speaking is difficult because of radiation treatment over 20 years ago

Posted by omaest @omaest, May 28 8:33am

Will I lose the ability to talk completely? I was diagnosed with stage 4 tonsil cancer in 2003 which was treated with both radiation and chemotherapy. The cancer was eliminated but the effects of radiation have never stopped increasing as I age. I've had PT for swallowing issues and exercises for neck motion to stave off radiation fibrosis but I'm at the point now that nothing seems to help and the prevalent thick mucus is effecting my vocal folds. It takes a lot of energy to speak. Most of the time it's only a whisper and even that takes energy. I use a salt and soda solution to gargle with that temporarily helps with the mucus but when I try to speak to
the mucus builds up again.

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cskippy | @cskippy | May 30 11:51am
In reply to @janetlev "@omaest my husband was losing his voice 16 years after radiation. His surgeon did a laryngeal..." + (show)
Profile picture for janetlev @janetlev

@omaest my husband was losing his voice 16 years after radiation. His surgeon did a laryngeal shot in his to close the opening he had. One side is paralyzed so the shot plumps up the other side to help closer. His voice is totally back. Swallowing is better but not fixed. It supose to last 2-4 months then you do it again or have the permanent operation called a throplasty ,

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@janetlev thanks for posting what's helping your husband & the info, I wondering in my situation would help? I have little movement in my voice box (larynx) and two other area.

Best
C

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Mentor
Sue, Volunteer Mentor | @sepdvm | Jun 1 8:56am

Hello @omaest. I also suffer from fibrosis 14 years after radiation but it is my neck and face as radiation was directed just below my ear, rather than throat. In searching on Connect, others have found successful treatment of the late effects of radiation with a Dr. Michael Stubblefield with Kessler Institute for Rehabilitation with a few locations in New Jersey. One patient in particular said that they fly from California to NJ just to see him. I don't know about your ability to travel like that, but second opinions and seeking out experts in their field can certainly benefit us in this health battle. I would certainly see if your ENT surgeon or radiation oncologist has any information on specialists for a referral. Sometimes travel for healthcare can result in better outcomes. We have been traveling from Ohio to Mayo in Rochester, Minnesota for 14 years for my head and neck cancer treatment. I think I am still alive because of their expertise.
Red light therapy is another healing modality to reduce inflammation. I am just researching this myself now. It has helped me recover some muscle strength in my face. Good luck to you and keep looking until you get some answers.

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omaest | @omaest | Jun 2 7:28pm

Thank you for responding and giving me some ideas. At this point travel is not something I can easily do as I subsist totally on a nutrition formula through a G-tube and have to have regular feeding intervals. Nothing by mouth. My initial chemotherapy treatment was in Germany and then transferred to University Hospitals in Iowa City, Iowa for both chemo and radiation. I have had regular survival checkups with them since. So a referral to a specialist there would be easier to get than one at Mayo. I live two hours away from the Mayo Clinic in Rochester so that would be doable if I could get an appointment. Thank you again and take care.

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