Any recommendations of hands-on work for radiation fibrosis (tongue)?

Posted by livfore @livfore, Jun 14 6:54pm

Any recommendations of hands-on work for radiation fibrosis. 10 years fairly good results from base of tongue cancer treatment, Now the back of tongue where C was, is now week, CT and MRI diagnose tongue palsy. Been to (3) different speech therapists and throat dialation, I can manage swallowing now (eat slower and back to adding water) it is my speech where I here my slurring. All therapists give me the basic (4-6) strength work --- concerned this is start of a decline and ready to fight it

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56tburd | @56tburd | Jun 15 6:52am

I'm glad to witness your determination to fight it. You've been through the ringer and survived it. The aftereffects are annoying at best, but one can adapt to the changes. Hopefully, you will find the means to overcome the challenges. Good luck!

josk | @josk | Jun 15 12:35pm

I had nasopharyngeal cancer treatment in 2006 - I was not aware of all these late effects of radiation .. until mid 2020. I was in a 'panic' mode then - slurring of speech and not able to talk for others to understand and get what I was trying to say. I find myself in this helpless situation and trying to find the cure for this.
Now - after a few years, and going through all studies, exercises, speech therapy, acupuncture, etc, etc, I am resigned to the fact that all I can do - is accept the situation, and do my best to keep the late effects of radiation from going downhill!!
With late effects of radiation, I am having - speech issues, swallowing issues, severe neck fibrosis, drooling, numbness in lower jaw and lip, misaligned vision in left eye (radiation was concentrated on the left side). And of course - these issues have drastically changed my lifestyle - avoid social gatherings, eating out in public - doing my best to be 'ok' on my own.
Am still trying to accept and adapt to this late effects of radiation.
Cheers and best wishes to all !!

56tburd | @56tburd | Jun 16 8:50am

In reply to @josk "I had nasopharyngeal cancer treatment in 2006 - I was not aware of all these late..." + (show)

@josk it was 2006 for me as we. It definitely changes our lives. When first going through it, the unanswered questions added to the anxiety. Hearing of new side effects cropping up doesn't exactly help either. However, I've accepted the new normal and am thrilled that I've had 20 years, perhaps more, added to my life. Live well.

josk | @josk | Jun 16 2:04pm

In reply to @56tburd "@josk it was 2006 for me as we. It definitely changes our lives. When first going..." + (show)

@56tburd true ... most grateful and thankful that I was 'norm' after the treatment, but when the late effects started - bit by bit - I guess I was not able to accept and cope - thus the panic mode and the checking around for help, and also trying out what helps.
Now with a few years of living with these late effects of radiation - I am more resigned and am doing my best to adapt to this 'not normal' lifestyle.
Cheers !!

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