Nerve damage effecting tongue, muscle, swallowing.

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,

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.

@lilypilly Hi, you are not alone on this journey! For me, the adjustment to my "new normal" is still a challenge, and I am a bit further out from my treatment than you are. I did see an improvement in my swallowing earlier this year when I began to focus on reducing my internal inflammation. While my inflammation markers remain in the high range, I noticed an improvement in my swallowing after starting acupuncture. The acupuncturist focused on reducing my inflammation through acupuncture and herbal teas. Once I started seeing improvements in swallowing, I began researching other anti-inflammatory techniques, so I "tried" to remove all sugar and salt from my diet. I also drink turmeric/ginger tea and started taking supplements such as beetroot and Omega-3, 6, 9. If I want to eat a meal with minimal challenges, I eat at level 3 or 4 food consistency (soups, etc.), but that is not always possible or satisfying.

Each person's body reacts differently to diet, so I can't say these things will help you, but for me, they have helped with my swallowing.

Best of luck! You got this!

Eric

Hi
if having to blend your food - how do you handle eating out in public?
For myself - I tend to isolate myself and do my best in not meeting up for meals or social gatherings (speech and swallowing issues, and hearing impairments). I find it more comfortable eating at home on my own (I live on my own) and if and when food gets stuck in my throat, I cough it out - but in public and in restaurants I am not able to do that.
I guess this is the reason why I do not blend my food yet - because very often I tend to spit out or cough out.
Ciao - happy wkend!!

@josk
Maybe try pudding, apple sauce, jello. I take it on the go. I just try to avoid restaurants. They seem to not serve my creamy soups.

@lilypilly Hi, you are not alone on this journey! For me, the adjustment to my "new normal" is still a challenge, and I am a bit further out from my treatment than you are. I did see an improvement in my swallowing earlier this year when I began to focus on reducing my internal inflammation. While my inflammation markers remain in the high range, I noticed an improvement in my swallowing after starting acupuncture. The acupuncturist focused on reducing my inflammation through acupuncture and herbal teas. Once I started seeing improvements in swallowing, I began researching other anti-inflammatory techniques, so I "tried" to remove all sugar and salt from my diet. I also drink turmeric/ginger tea and started taking supplements such as beetroot and Omega-3, 6, 9. If I want to eat a meal with minimal challenges, I eat at level 3 or 4 food consistency (soups, etc.), but that is not always possible or satisfying.

Each person's body reacts differently to diet, so I can't say these things will help you, but for me, they have helped with my swallowing.

Best of luck! You got this!

Eric

@ewilde Did you get any speech and swallowing exercises before your treatments?

@lizzyj58 No, interestingly enough, I did not meet with a speech therapist or swallow doctor before starting treatments.

@lizzyj58 No, interestingly enough, I did not meet with a speech therapist or swallow doctor before starting treatments.

@ewilde I just looked up what husband was supposed to have. Ita type of barium x ray where you are given different types of foods to see if he has difficulty swallowing anything. He doesn't want to have this as it's in NY and we're in NJ.