Thank you for your post! It feels like I’m in the same boat except I don’t feel any enlarged lymph nodes. But I do have varying types of ear pain on the treatment side. I was Dx with base of tongue ca with involvement of several levels of lymph nodes in my neck in August 2020 and Tx plan was standard protocol of chemo and radiation. I have been experiencing severe Burning Mouth Syndrome (BMS) since Tx ended. Since April/May of 2024 I began experiencing varying types of ear pain, only on affected side and never with the opposite ear. It could be stabbing, burning, radiating, shocking (like someone just electrocuted my ear that shoots down my neck). One of the most frequent types of ear pain is a feeling of “fullness”. Like what you get when flying. Lots of times it feels like someone is blowing up a balloon in my ear and it’s going to pop! And internally I’m screaming “ENOUGH ALREADY.! POP!!!” All the different types of pain radiates through my ear, down my neck, and begins to involve my larynx to where my voice starts to get scratchy, soft spoken, coughing, and then loose my voice altogether; particularly when in conversations lasting more than an hour. My (first) ENT and Radiation Oncologist have told me this was all in my head and they’ve never seen anything like it in over 30 years of practice. For the last 4 years I’ve felt dismissed and just a patient number. Not someone they cared about and wanted to find the problem and fix it. My new ENT immediately Dx Glossopharengeal Neuropathy thinking it was an inflamed or damaged 5th cranial nerve for the ear pain. That Dx did not include the cause of the BMS. I was referred to a Neurologist and tried several types of medications but the side effects were too much to handle. I’m super sensitive to anti-depressants, anti-seizure, and pain meds above low doses. A recent MRI showed inflammation of the 7th cranial nerve that typically explains Bell’s Palsy, but I don’t have any of those symptoms. I’m wondering if the Radiologist missed that it could have been the 5th cranial nerve?? The Neurologist is recommending a spinal tap. I need to have more conversation about why this procedure as I have not found any literature to use this method to “heal/cure” the ear/radiating pain. Unless it’s to rule out other disease/conditions.

I’m so sorry for the very long post, but I’m anxious to see responses to your question as I feel I may benefit from this conversation immensely!

Wishing you the best in getting a resolution to your condition.