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Tripping Over My Tongue

Pam M's picture
Pam M
Posts: 2196
Joined: Nov 2009

Hi all. Pam here - almost 5 months post tx for base of tongue. I got my PEG out and throat dilated a couple of weeks ago. I've noticed very recently that I sometimes have difficulty speaking again (haven't had this problem for at least 3 months). Not total inability to be coherent, just like having a harder time getting my tongue out of the way of my teeth, like it's puffy or something. It comes and goes. Anyone else experienced this post treatment?

CajunEagle's picture
Posts: 398
Joined: Oct 2009

The challenge being that my tongue would swell up for a few days, then return to normal. The process would start all over again a week or so later. This took place during the last month of radiation and chemo, and probably a few weeks thereafter. The real bummer was finally getting some solid sleep at night......dreaming heavily about eating a fully loaded cheeseburger.......and end up biting the sides of my swollen tongue. Good gosh almighty, THAT HURT. My speech would get all garbled and non-senseable due to this swelling, but like most things, it finally went away.


Landranger25's picture
Posts: 208
Joined: Nov 2009

Hi Pam. Once in awhile I too just can't get my tongue to to keep up with the rest of my mouth and brain. Hasn't happened much here now 10 months out but in the past it did. Usually on the second try if I just slowed down a little bit and tried again it was fine. I was base of tongue as well. Hang in htere it will get better. Take care.


Pam M's picture
Pam M
Posts: 2196
Joined: Nov 2009

Larry and Mike, thanks for replying. I was gonna call my doc's office, and just realized it's after closing time. Started imagining things earlier. I should know better, but act like I don't. My PET at the end of June showed activity on only one node (not my tongue), and even that activity was within the range of normal, so could just be healing tissue. Still, got antsy when the "oddness" kept coming back. Enjoy the day.

sweetblood22's picture
Posts: 3228
Joined: Jan 2010

I am 15 months out and my speech has gotten a lot better but I still have tongue tripping problems too. I notice I am much worse when my mouth gets one of it's dry-er spells. I kind of get sort of lispy. I have learned to position my tongue differently to say certain letters and sounds. It mostly works when I am not in a lot of pain, very tired or extra dry. Sometimes there is just no relief for my tongue and dry mouth. I started rads down a salivary gland, since they took it when they did my neck dissection.

tonyanddenise's picture
Posts: 70
Joined: Jun 2010

I am only a bit better than half way through tx but my tongue has been an issue. I have bitten both side while sleeping and awake. No apparent reason other than it gets in the way of my teeth! doc said it was fairly normal. Still hurts and is quite irritating.

D Lewis's picture
D Lewis
Posts: 1576
Joined: Jan 2010

Hi Pam

I'm just over two months out from treatment. Over the last few weeks I've noticed edema happening at night. My throat, and under my chin is swollen with edema when I wake up, and it is usually accompanied by a tongue that feels about three sizes too large for my mouth. It is worse on some days than others. It always subsides as the morning progresses, but talking is difficult till it does, and I feel like a mush mouth. The neck massage techniques described elsewhere on this board have been very helpful.


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