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Nerve damage effecting tongue, muscle, swallowing.
Hello, Back in 2015 /2016 I had tonsil cancer after going though chemo & radiation. (I'm cancer free :)) but I do have nerve damage from the first time I had radiation 🙁 my hold body is affected. My neurologist explain to me, it's like a extension cord the treatment I had went through all the protective layers of the ext. cord. How I explain this is like you body is a sleeping fleeing, like your foots or arm is a sleep and you shake to wake it up. My question is now after 7 yrs or so the nerve damage is now effecting my speech, nerves in tongue and the muscle in swallowing. Please has anyone going though this ?
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@zenren14 , My ENT and the head of my tumor team said exactly what you wrote, "Radiation is the gift that keeps on giving." He also told me in the very beginning that if I lived long enough to expect respiratory problems. And that's where I am now, 20 years later. I'll look into xylimelts but I do have to worry about how much saliva will get caught up in my esophogus/wind pipe and also if it has any ingredients that could damage my teeth. I am getting all of my nutrition through a PEG because I cannot swallow without aspirating. Anyway, have a wonderful holiday season and thanks for your concern and suggestion.
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1 Reaction@omaest
maybe ask for a second opinion...pharmacist may be a guide....until you speak to your ENT.
Be well.
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2 Reactions@cskippy
I take note of your pics...that's part of the course...may I ask where your tumour was?
@zenren14 Good morning. Tonsil Cancer HPV Stage 4. I'm not sure what side the number of tumors were on. 3 and 4 all together 7 tumors.
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1 Reaction@cskippy hey Connie, I’m 9 years post treatments but I went through what you’re going through during the first year. Nothing helped including Mucinex, prescription and humidifier, it was horrible and Xylimelts made it worse.
I did many warm water (hot as I could tolerate) swish spit, swallow hack spit and repeat throughout the day.
Jody
Idaho
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3 ReactionsHello Jody, how are you doing now ? are you eating & swallowing? I do the something, take some water swishing it around my mouth then spit out all day and in the middle of the night...I don't swallow because both flips are very weak. The epiglottis for the lungs and soft palate uvula helps seal off the nasopharynx upper part of the throat & nose. I have not try warm water, only cool. Did / do you have a lot of saliva? Jody all my doctors are baffled about my case...all tell me the something, any side effects from radiation & chemo treatment should of happened in the first or so years. In my case it's stated happening in 2023 and slowly getting worse. I'm on a feeding tube for now and going to speech therapy. I started doing more research out side my area to see what other options I have. I looked in MN that when I came across this support group. 🙂 AZ, KY, NC, TN, CA even up in Portland. Girl I was just thinking it's 2025-2023 = 2 yrs. the doctors are off by 8 years. if I did my math right Lol 😉
Have a good day 🙂
Connie
Oregon
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