Hi everyone, I want to start by thanking all of you for sharing your experiences on this site! After years of doctor visits, unexplained throat/neck/head/jaw/dental pain, troubling swallowing, fatigue, anxiety and fear about my health, and general feelings of unwellness, I finally thought to google “clicking in my throat when I swallow”, which led me here to all of you. And I’m so grateful.
Here’s the story. After staying up all night and reading all (literally all) of your stories for the first time, I booked an appointment with an ENT who was supposedly familiar with ES. In short, he blew me off, told me in was TMJ and LPR and sent me packing. So then after another all nighter I booked an appointment with another ENT at Mt. Sinai (Manhattan) whose name I found on an ES paper in a medical journal. This doctor ordered a CT w/contrast to rule out ES. When the results came back, he told me everything was normal, repeatedly saying that the radiology report “didn’t mention ES”. When I asked him if he looked at the scans, he hesitated and said that he had looked at them briefly. He ended our video call by saying “I don’t know what’s causing your symptoms.” and then he basically hung up on me.
Afterwards, I was stewing over it and thought to myself - if you are trying to rule out something specific, wouldn’t the radiology report mention that specific thing, even if there was no evidence of it? So, I secured the radiology report and when I saw no mention of ES whatsoever, I emailed the radiologist who signed the report and asked her to evaluate my styloid processes and ligaments.
Within an hour she emailed me back: bilateral calcification, 4.3cm on the right and 4.4 on the left (majority of my symptoms are on the left). Within a few more hours, I had my hands on the disk of images and was able to run them through the 3D program - thanks to the tutorial on this forum! (See below for the pics.)
So, thanks again to this site, I have an appointment with Dr. Mark DeLacure on the 26th to hopefully get the official diagnosis and come up with a plan of action.
I feel so different just knowing what it is. I’m still in just as much pain as before obviously but I feel less panicked, and worried. It’s a game changer to know what’s most likely causing so many of these symptoms. At some point, I’d like to make another post about symptoms but for now, I just wanted to sincerely thank you all for sharing your pain, as well as your stories of relief (and everything in between) here on this forum. It’s made a huge difference in my life already!