Nerve damage effecting tongue, muscle, swallowing.

Hi @cskippy I a. 1 year out of treatment for mouth C. The radiation affected my speech as I sound very tongue tied. It has affected my chewing but most if all it has affected my swallowing.
I speak to.my support team..Dr's and am told nothing cand be done. I just have to try to eat. This js difficult when the muscles do not work. So I do try different foods but it has to be chewed and chewed. I then have to drink water to push it down. I find sparkling water works best. Even nonalcoholic beer.
It is terrible and scary. I purchased a Life Vac on Amazon in case if choking. See a Speech pathologist and they will provide you with exercise. Good luck..God Bless.

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?

Hi @cskippy,

At age 39, I was officially Stage IVB T2N3M0 tonsil cancer on my left side caused by HPV and 3 infected lymph nodes. I am 17ys out (2008 diagnosis) where I had 35 rounds of Photon radiation which amounted to 70 Gy (7weeks) and 3 rounds of the platinum-based chemo Cisplatin.

I had other issues come up along the way with the radiation as it’s a gift that keeps on giving. So be very aware of what is going on inside your mouth and throat. To name a few off the top of my head, it destroyed my thyroid giving me Hypothyroidism (makes you feel fatigued and most of the time you gain weight too) so now I have to take a pill for it for the rest of my life. Watch your bone structure and tooth decay in that region too- so make sure you go to your dentist every six months. Paralyzed my left vocal cord so my voice is not as loud as it once was, and swallowing and speaking has gotten worse but going to a speech/swallowing therapist has helped as I can basically eat anything just may take longer depending on what it is. Scarring of both upper lungs. Had dry mouth so I researched and found Electrical Stimulation Acupuncture in 2015 where I was tested to get a baseline and retested after 8-10 appts. and had great results- never needed to go back and has been fine ever since and I don't have to carry a water bottle with me either. Since then, I believe there are other additional avenues like sprays to help with that. My accessory spinal nerve is damaged (called Brachial Plexus Legions) which is why my left shoulder sags and trapezius muscles wasting away with winging of the scapula which includes limited range of motion. Also, I would see a dermatologist at least annually to watch for any potential skin cancer from the radiation too as I received a couple spots in (November 2024) with that, but it was basil cancer which is highly treatable.

Good luck on your journey.

God Bless, I will be checking in to the Life Vac, I do a lot of choking and out of the blue I start coughing and I can't catch my breath then I sneeze then I gasp for air.. very scary.
Again thank you... God Bless

cskippy

Hello, William
Thank you for the welcome, I never heard of a ENT cancer doctor. I do have a regular ENT doctor, he suggestion dilation of the esophageal. Still worry about that. I'll do some research finding a ENT cancer doc. Thanks for the info.
Best

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

Basically an ENT with cancer recovery experience. We should always question our doctor’s experience without hesitation.

Hi @cskippy,
Unfortunately, they all are from the treatment. I didn't even mention before that I was diagnosed with Tongue cancer on my left side of my mouth on March 1, 2024, and had a left partial glossectomy with a radical forearm free flap surgery on April 3, 2024. It also included a modified radical neck dissection. This one was not caused by HPV and was most likely from too much radiation from the first cancer as it is literally adjacent to my left tonsil.

@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.

I am 15 years cancer free of salivary gland cancer. I underwent surgery to remove my parotid gland and neck dissection. I then had Proton Therapy radiation, but no chemo. After radiation my mouth would not heal. I tried acupuncture. Did not help. I went through hyperbaric chamber therapy and it did help a lot, but not completely. I have lost 5 teeth and 3 more are in trouble. I have some sores in my mouth and one major one on my tongue. There is concern that my radiation damaged tongue will become cancerous. I have trouble swallowing as food gets stuck in the back of my throat and no amount of drinking a liquid will dislodge the food. I have to hack it up like a furball. One day I may not be successful. I had testing for this but no real constructive directions on how to alleviate this other than chew longer. My speech is affected because of the loss of teeth and sore tongue as well as the inability to fully extend my tongue. I also experienced on 4 occasions the loss of control of my tongue so I sounded like I was experiencing a stroke. I was not. All of this is attributed to radiation damage. It is an ongoing adventure with no idea of what is next instore. There is always necrosis of the jaw as a possibility. Very depressing.