I started to feel a bit better (not so much physically but mentally.) I won’t dismiss that I have symptoms of TMJ dysfunction. I went to the dentist today and it was brutal keeping my mouth open. He was patient and let me take breaks. My left side was clicking a bit at the end of the hour. He felt it and said it wasn’t too bad. So far, he’s offered no suggestions regarding the TMJ.

I’m still having pain in the right tonsil... it’s not constant but can be suddenly quite painful, sort of like bee stings or an ache. Still looks nothing like the tonsil on the left but I guess I can’t expect that to change at this point. I’m still having the intermittent ear pain. Again, it’s not an ache but more of like stabbing and sudden and goes as quickly as it came on. Sometimes happens more when I’m talking.

Tonight I tasted blood and when I spit in the sink, my saliva was bloody. I saw blood on the tonsil but also wasn’t sure if it was from the dental work on the same side because that’s still tender.

I’m so discouraged and scared. ENT basically told me that a clear CT means she will see me in 6 months. I don’t trust her knowledge of HNC anymore given the fact that she has suggested it is a smokers/drinkers disease. The other ENT (not the one who ordered the scan but within the same practice) wanted to see me in September. The 3rd ENT (different practice) is seeing me Tuesday. I made the appointment online and I know she was willing to see me again given correspondence we had through my patient portal.

I want to be like many others who heard “CT was fine, you’re fine” and went on their way and everything WAS fine. But I’m dwelling on those cases of misdiagnosis. Those who were told they were fine and found out later their cancer was super small and hidden in the tonsil or no primary was found at all. And then I worry all over again about my nodes. And why is my neck (specifically the supra-whatever it’s called muscle) still hurting after 2 months? I’m worried there is a large node pushing or stretching it (as I’ve read about) but would the CT have caught that? I’d hope so. My nodes are unchanged at least since the CT, in my opinion. So that was a month ago...

My questions are... are my symptoms not being seriously considered since they are more typical of advanced disease and given my CT and not clinically enlarged nodes, advanced disease would be unlikely? Surely I cannot be imagining neck, throat, ear pain and bleeding. Am I perseverating on the rare cases of misdiagnosis? Or is it common and I’m right to be concerned that I’m just in that weird “we don’t see anything so there’s nothing we can do but wait” phase? 0/3 ENTs have been concerned. My PCP wasn’t concerned. My dentist wasn’t concerned (though he doesn’t know the whole story and I suspect he wouldn’t be concerned.) I know many folks with hx of tonsil cancer have indicated lack of symptoms yet a quick internet search includes ALL of my symptoms. Are they really not all that common? Does anyone have any thoughts or advice? It can be blunt and honest.

Just because I mentioned it, I AM being treated for anxiety. And I’m trying to follow the protocols for alleviating TMJ dysfunction symptoms (with no success... other than taking ibuprofen which I usually avoid due to stomach issues.)