Hi everyone,
Apologies, this is going to be a long one, I just need to offload all my fears.
I’m in the terrifying position where I am waiting to see an Oral & Maxillofacial Consutlant about several symptoms I’ve been having for quite some time now. I’ve tried to distract myself and retain some hope, but my symptoms seem to have so many red flags that I’m finding it difficult not to go to a very dark place.
For a while (couple of years) I’ve had an extremely dry mouth, horrid taste, tingling sensations in my tongue and palette, and sometimes feel swallowing can be difficult. Last year I was also diagnosed with TMJ issues (displaced discs with reduction and condyle erosion). I also experienced an ear infection and developed gastritis. It felt like everything was just snowballing.
Over the years I’ve had two biopsies from the roof of my mouth, the last one was in August 2025. This was due to nerve pain and white patches. They came back normal.
i saw an ENT early 2024 due to the mouth/tongue and throat symptoms and horrible taste in my mouth. He did a diagnostic procedure where he put a tube up my nose and down my throat (I can’t remember the medical term for this), but he didn’t see anything except maybe a bit of redness.
Since then and more recently (for the last couple of months) I’ve had worsening symptoms of swollen cheek/jaw area, a swollen, hard and tender lump under my jaw and on my neck, and I’ve been getting this awful sensation when I move my tongue, like it’s a pulling/tugging feeling, but with pain, and it’s only on movement. I’m so anxious about it all. I also have a regular sore throat and sometimes this worsens after talking for a bit.
I’m absolutely terrified as to what’s going on, and I know nobody can diagnose or reassure me on what it is, but I just needed to get this all out. Thanks for reading if you’ve made it this far x
It’s worth phoning the hospital to say your symptoms have progressed and you need to be seen urgently. Call your GP to refer you as well and book a private ENT. See which comes up first. Private consultants have NHS posts and you can easily be transferred
Good luck.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Thanks Dani, I am under the care of Oral and Maxillofacial for my TMJ issues and when I went to see him last week and he felt the lump I was referring to he has put an urgent referral through to the Head and Neck Clinic at the hospital who deal with matters like this. I believe that is made up of ENT and Oral and Maxillofacial specialists He said it could take three weeks, but I’ve now got an appointment on 18th June, so 11 days time.
In the meantime, I was so distressed at having to wait for three weeks which I know is still quick, that I went online and booked a private maxillofacial consultant, I managed to get one for tomorrow. Probably should just have waited for the NHS one, but I just couldn’t. I wasn’t sure if this sort of issue would be Oral and Maxillofacial or ENT? The oral maxillofacial person is a specialist in head and neck cancers. He actually heads up the Head and Neck area in the NHS hospital too.
As I said, I probably could have waited and I’m not sure if they will be annoyed at me going private AND now having a NHS slot. I just don’t know, all I know is I needed seen as soon as possible for the sake of my mental health 
As I said, I probably could have waited and I’m not sure if they will be annoyed at me going private AND now having a NHS slot. I just don’t know, all I know is I needed seen as soon as possible for the sake of my mental health
Don’t worry about upsetting anybody because you won’t. Keep that appointment tomorrow and good luck. Let us know how you get on if you’re up to it.
I would have done the same.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Thanks Michael,
You’re right, the waiting and anxiety is torture, and although I know the advice is not to consult Google……I have been and still am and it’s scared the life out of me. I’ve self diagnosed myself into a complete mess
