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Nerve damage and unable to open mouth much. Stiff jaw.
After TORs surgery Jan 26, my husband has not been able to swallow. On swallow takes an hour sometimes. Nerve damage also caused stiff jaw and inability to open his mouth more than about one finger width. Have been warned that jaw could calcify and it might require surgery down the road. Now 3 weeks out from 35 radiation treatments and not improving in that regard. No doctor has encouraged us to see a dentist. Why suggestions welcome. Scared and worried.
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Has anyone recommended for him to go to physical therapy, from what I have read up on and seen (my husband just finished in June with RT for sinus cancer) we had his oncologists write a script for PT, after enough healing, to avoid stiffness in his neck/mouth/jaw area, it has been bad since the surgery. I believe he will nee to do these exercises forever, but we'd rather avoid any long term issues if we can try. Good luck with everything, it can be frustrating and there are times where we keep looking for the answers to relieve their symptoms and feel hopeless, but it does get better as you figure out what works for this new lifestyle.
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2 ReactionsBe patient. I went through this 24 years ago. You can exercise by buying some tongue depressors
stack several together and place them between your teeth or gums. ( my teeth and jaw were ruined by Radiation ) My dental Oncologist to me never get teeth or I would break my jaw.
No problem. I've been on a liquid diet for 24 years........
Good Luck. NEVER GIVE UP ! Things will get better but it takes time
Best Regards,
Michael
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1 ReactionThere is a device called a Therabite that slowly and gently forces the jaw open. The swallowing PT person should be able to get him one. They also used a Tongueometer on me to strengthen my tongue to swallow better.
My doctor prescribed gabapentin to help restore nerve damage, but my PCP suggested I stop it after I complained of foggy brain. I only had 2 days left and my brain came back to normal after I stopped it. Hope this helps a little.
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1 ReactionThanks. I'll ask about that. His pain management doctor just increased his gabapentin dosage to try and help his pain. Next step is Lyrica. I think someone else here mentioned therabite.
Hi, I had TORS surgery last year and had similar challenges to your husband. A humidifier next to my bed while I slept helped with swallowing. I also had a facial steamer that I would use throughout the day to assist with my swallowing.
To address my swallowing and jaw issues, my surgeon recommended that I see a swallow doctor, and they assisted me with PT exercises and monitored my progress. Best of luck! It is a journey.
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1 ReactionMy husband had a lower tooth removed and it is not healing properly. Has anyone had hyperbaric oxygen therapy to encourage healing?
How much Gabapentin were you taking?
300 mg 3 times a day but they wanted to slowly increase to 2400 mg total
I’ve been fighting that for nearly 8 years. Speech therapy was a waste of time and money for me.
My primary physician put me on a muscle relaxer and that helped a ton! At least I can open my mouth enough to eat a thin hamburger or a bratwurst but sometimes it’s a chore.
Swallowing food is a whole other ballgame though. I need massive amounts of liquids to get food down (even oatmeal).
Eating makes normal life not so normal and I try not to eat while I’m alone because of chocking on the food and aspirating.
You mentioned dentist. Make sure he goes for 6 month check ups and gets fluoride treatments. I also apply a prescription fluoride toothpaste several times per day after brushing. I try to brush at least 4 times per day.
Hang in there and it may get better!
MOJO