nerves each side of tongue destroyed by radiation
my hubby is 1 year and a half since radiation... nerves gone each side of tongue.. so tongue does not work... unable to eat drink or even swallow saliva... he drools all the time... it's so sad...his tongue doesn't work and the nerves will never regenerate... so physical therapy will not help... anyone else?
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So sorry for what your husband has been dealing with. I just noticed your post and hope that there's been some improvement in his condition since last November.
I had stage 4 tongue cancer (3 lymph nodes involved) but refused radiation & chemo--and thankfully, I've been doing extremely well, over 2 years cancer free post surgery.
It saddens me so to hear about the suffering patients endure from radiation & chemo. To my great surprise, my surgeon actually acknowledged that my quality of life is far better than patients who've gone through RT & chemo.
Good morning all, just a follow up to confirm that I did connect with cancerconnect and they are open to creating a survivor survey from all warriors willing to participate, the goal is to gather our various post-treatment concerns, challenges, life altering side-effects and debilitations many seem to face post the routine radiation with chemo regiment received. Excess muscles, inability to swallow, whether partial or permanent, weight loss and management are some effects I see just to name a few. The purpose is to use our SM platform voice of survivors to document our side-effects so HNC oncology research has “fact-based” evidence” to review as they are starting to realize and admit to the damage HNc patients are suffering immediately post or several years out from treatment. I’m sharing this ideally to encourage our participants to share your challenges as I am helping to create survey questions. Doctors own this SM platform, the survey will be private and confidentially run by their company, my goal is to help their team design quality questions addressing the plethora of challenges I have been reading since I joined this group in 207 on behalf of my husband, he had BOT tumor attacked with 7-wks radiation w/chemo that completely collapsed his esophagus, now 100% g-feeding tube dependent, something they deemed “collateral damage”. To me, that is just not acceptable ... and we can help make this better for the next patient facing such treatment options. Looking forward to our collective efforts as we pay it forward helping others. Sending smile of strength to all daily...
Sorry for typo, should read Excess mucus.....
LOL, Dotti, I was wondering..."excess muscles"? I could go for that, as long as they aren't too bulky. 😄
Too funny😄
My dear friend is in the same situation and she uses a suction machine to suction out the saliva and, in her case, excess mucus. I think insurance would pay for the suction machine. Hope this suggestion helps. Also, she had a speech pathologist who helped.
Great advice, Beth. Yes, Anab(elle?), definitely get the suction machine. My insurance paid for it and I only used it for a short time in the initial post surgery at home period but if he is still actively drooling, he would be definitely still be eligible. Speech therapy did make a positive difference also.
Please give us an update on your husband's condition, @Anab--and so sorry no one responded to your original post until I did nearly a year later.
Unfortunately, you might no longer be a member of the cancer connect community...