The inside of my mouth has improved 100% since radiation but I wonder if my tongue will ever feel more normal?? Does anyone else have issues with their tongue? I didn't have any surgery to my tongue but the radiation seems to have done a number on it. The left side that received more radiation is the one giving me trouble. First I had a horrible radiation sore that finally resolved and now I keep irritating it with my teeth. I will develop a sore then it will go away, but that side of my tongue always feels different. Any input?
Minnie

I have radiation damage on tongue - nothing serious and nothing compared to the radiation damage in the back of my throat (I have no uvula for instance - of course I don't snore anymore either). I have one small spot that looks like a divot. It took a long time for my tongue to recover from all of the abuse. I also had radiation sores on the sides of my tongue and talking caused them to rub against the teeth - it was very painful. Thank God that's all over with...

Minnie,

It was a very slow process for me (probably way over a year), but eventually my tongue began to feel more normal. Since I had surgery before radiation, I ended up with a lopsided tongue that took a lot of getting used to. Then the radiation brought on swelling that lasted for months, and left it feeling so clumsy that it was hard to talk or move food around when I was trying to eat. After the pain and mouth sores subsided a bit, I had numbness for a long time and, like you, I ended up biting down on it sometimes by accident.

It has been about as normal as it's going to get for more than a dozen years, and the left side (where most of the radiation was done) still feels "different", but very manageable compared with the first year or two after treatment. It's one of those things where it's hard to see day-to-day improvement -- it's more of a month-to-month process, I think.

Cathy

I didn't have surgery either. I will often feel soreness on the right side of my tongue where the tumor was. A few months after treatment ended I was scrapping this yellow-brown crusty stuff off my tongue, but they told me that was normal considering the radiation. My tongue will get fatigued when talking for a long time or eating things that require a lot of "tongue work." I'm more aware of what's going on with my tongue and my mouth than I ever was before dx.
-Brett

I am out of Radiation/Chemo 18 months and still have a very similar problem with the left side of my tongue. I think the radiation scatter from an implanted tooth could have over dosed me somewhat. I also irritate it with my teeth or by eating something abraisive at times. I am able to eat most anything now even though the overall healing of my tongue has been slow. However it seems this place on my tongue doesn't want to completely heal. I am hopeful another year will see it resolved. You should certainly see more improvement with time!

Weldon

Base of Tongue SCC, Stage IV, surgery, Rad X 38, Cisplatin & 5FU X 3

Minnie,
When Marcy's tongue would be further irritated by her teeth she would put wax on her teeth or tooth that was rubbing against her tongue.
She got it by the dental floss area of a drugstore.
Good luck,
Michelle

Minniea,
I am over 2 years post treatment but still have problems with my tongue although not a serious one. My experience is slightly different from most people here because the right side of my tongue suffered more than the left side which received the most radiation as my tumors were all on the left. Even the oncologist could not explain why. Those 'ulcers' on my tongue had caused a lot of pain for at least a year especially when the sharp edges of some of my teeth rubbed against them. My dentist helped to smoothen the edges and it helped a bit. As time went by, the pain became less and today I can forget it for most of the time particularly when I am occupied with something else.

Karen.

One other point about irritation from teeth -- I found it was going on often enough (and sometimes while I was asleep) that for some time now I've been wearing both upper and lower night guards when I sleep.

Cathy

Has anyone who experienced swelling in their tongue from radiation finally gotten over that - and how long after the treatmeent ended? My sisters tongue was quite swollen, has now gone down due to steroids but is still swollen to the point where she can't talk.

Minnie,

My tongue on both sides has a strange feeling like numbness at times, painful at times. It is more at the very back of my mouth. When I move my tongue back and forth it hurts back there. It can't be from rubbing on teeth because they yanken them all out. The doc said as much radiation as I had, it may never feel the same as it used to.

Ed