Nerve damage effecting tongue, muscle, swallowing.

@skippy I feel a bit safer with the Life Vac handy. Especially when I am alone.
Please know it will get better. Itbis a slow and long process. Keep praying and keep believing.

@lilypilly I have been thinking about getting one. Eating when I’m alone is dangerous!
Have you had to use it?
Jody

Hello, My treatment was very hard, they hit me with radiation was place in a tub, then 3 or so days later hit me with chemo ended up in ICU for a week. went home and a week or so later wasn't keeping anything down not even water 🙁 went back and had to place a feeding tub in after about a month was still getting sick, went back to hospital had to remove FT and replace in lower GI... I had a total of 33 rounds, I still have my lymph nodes, just had an ultrasound done 9/11/2025 to make sure there was no blockages going. every thing came back narrative. 🙂 that being said, I have adjusted to my nerve damage with my body... It's just so hard sometime with this new journey I'm on now, how this effect my ability to normal talking & eating. I do what to thanks you for all the information. I will be checking into the Electrical Stimulation Acupuncture for sure. Question are the other issues your having from the treatment? Thanks for all the info. Good luck on your journey, God Bless 🙂
cskippy

@cskippy
Hey Skippy, Wow you've got a lot going on, as a cancer patient I think we all do and share an experience or better said a journey. Skip I would Like to ask you if you did get to go thru your Electrical Stimulation Acupuncture therapy and to know if it helped you in anyway? I might have this as an option to assist with my pain but I don't know. If so would you recommend? would like to hear from you and hope things are coming along. Thank You.Stephin001

Hello Eric I read your response and even if it was not for me I felt I needed to reach out. I am 18 months out of diagnosis and 15 months post treatment. I have 35 radiation and 3 chemo.
So far I have improved a great deal but still dealing with many issues.
I am unable to swollow without some water or liquid to chase. I suffer greatly from dry mouth and my tongue is still swollen.
Any advice at all as to what may help? I wear a compression mask for neck/throat lymphedema with regular massage.
I use xylitol for dryness and also a dry mouth spray.
However I am so frustrated and just looking for some normalcy in life. Thank you Allison

Hi @cskippy Welcome to the Head and Neck group here at Connect. In my personal experience seven years is not unusual to continue having nerve issues and having to deal with this. My speech was also affected and being a field engineer working in loud environments whilst trying to be heard complicated matters. I learned to slow down my speech, which helped in pronunciation so my mouth could keep up with my brain.
Swallowing on the other hand improved with time. Changing eating habits to mate with loss of saliva and difficulty swallowing improved over time. Likely this was simply that I got used to new ways of eating as I am still the last to finish my plate. I would say however that swallowing issues can be addressed through several methods which include therapy, exercises, and in some cases surgery. Swallowing requires the use of roughly fifty small and large muscles working in coordination. Radiation messes with not only the nerve signals but with the muscles as well. Again, what worked for me was simply slowing down.
Others on this feed likely will have some input to this discussion as time permits. Most of us have faced identical issues from our brief romance with the cancer family.
Have you consulted a cancer experienced ENT concerning these issues?

@lilypilly have you tried a mouthwash for dry mouth? Manuka honey helps with some symptoms. What type of compression mask do you use?

@lizzyj58 yes....I have tried all of it. Manuka....mints...mouthwash...gum...pickles to mention a few.
Nothing seem to help. Nights are really horrible.
I have a custom compression mask. However it does control the swelling a bit. Still swollen when I wake up. Thank you