I am thankful to have found this site. To keep it simple:
My main symptom is right pain in the back palette/throat that comes and goes but feels like something is stuck there. Feels like an ulcer at times. It causes my whole body to flare. Then my jaw and ear will hurt. This honestly has happened for years and the ENT can never help.
Other issues: headaches, fatigue, dizziness.
I see a orofacial specialist who is treating my TMD. He suspects Earnest syndrome. In my own research, I now suspect Eagles.
I am also suspecting a possible autoimmune condition.
Does anyone have experience with both or distinguish between them? Do I treat as Earnest and then wait on Eagles? Thanks in advance.
I also forgot to ask- have you been able to narrow down what causes a “flare up”? Curious if anyone has insight. Thanks!
@YoureNotCartwright - If you haven’t had a CT scan of your neck in the area from the hyoid bone to skull base to look at your styloid processes & stylohyoid ligaments, that is what you’ll need to diagnose ES. Perhaps the same scan could also look at your stylomandibular ligaments to see if they’re calcified (Ernest Syndrome). We have had members who had both calcified stylohyoid & stylomandibular ligaments along w/ elongated styloids. Once all the calcification was removed, many or all of their symptoms resolved or at least became more tolerable.
As @Isaiah_40_31 says, there are members who’ve had both, the symptoms are similar. There have been a few discussions, here’s a link:
The Importance of Diagnosing Ernest: A Crucial Study - General - Living with Eagle
Autoimmune issues do seem to be common, my personal (not medical!) opinion is that the inflammation caused by calcified ligaments maybe triggers it…
There have been lots of discussions about flare ups & the answer is we don’t know what causes them, I’m afraid! It’s very common & seems to be no rhyme or reason why symptoms flare or disappear
I hope that you can get a CT & a definite diagnosis.
Thank you! How is the calcification usually removed?
The calcification is removed either through an incision in your throat (intraorally) in the area where your tonsils are (sometimes tonsils have to be removed, too, if you still have them) OR through your neck (transcervically/externally). On this forum, we feel the external approach is safer because the surgeon can see the muscles, nerves, & vascular tissues to help keep from damaging them during surgery, plus the styloids can be cut shorter & calcified stylohyoid ligaments can be removed more completely than with the intraoral approach. Also, nerves are routinely monitored to help protect them. The incision is usually made in a neck crease & is nearly invisible once healed. With the intraoral approach an incision is made in the throat, & there is no visibility of nerves or other soft tissues, a probe is used to find the styloid so it can be shortened.
There are Youtube videos of both surgical approaches. You can watch them if you’re feeling brave.