Hello,
I understand Eagle Syndrome is classed as a rare condition, but is it really? Or is it just not looked for/diagnosed?
I’m on a TMJD group (UK), and there have been quite a few mentions of it, but also people with symptoms that could easily suggest this condition but have never been evaluated for eagles. It’s rather scary. Especially with the lack of health professionals for it 
My opinion would be that it’s not as rare as we think, and that it’s underdiagnosed. I read migraine stories, stories of folks who’ve either been injured in the past or diagnosed with a connective tissue disorder, have been to more doctors than they should be (I was), yet their headaches/migraines continue to mystify doctors and neurologists throw up their hands and call it either migraines or anxiety.
I can’t tell you how much getting a diagnosis that makes sense (as in abdominal vascular compressions, chest compression, connective tissue disorder, and more recently Eagles Syndrome) has helped me “accept” my pain. No, I still want answers and relief, but for once the reason for the pain isn’t a “vague something, but WHAT?” – it has a label! And definitely does not fit just in the anxiety box. Or the migraine box. For years, I can’t tell you how many times doctors said that my symptoms are “outside the box”. Yes, they used that very term. At first to me it was like, “oh?” Later it was, “that’s an old story”. And still later it felt like it was just a term for ignorance, or not wanting to dig deeper…… I’ll call it ignorance, because guess what, so was I! I never heard of ES before. I never knew much about connective tissue issues before. Many of my doctors never even saw the stretch marks I have scattered all over between my shoulders and knees. Till May of this year, a doctor in Germany saw them and casually commented on the “lots of stretch marks”… It went till Sept. when Dr. Middleton further diagnosed things that it all started clicking and making sense! Like my local doctor told me, the one who slogged through my “unusual pain and headaches” the past 12 yrs, she said, “You are a patient who is teaching me so many new things.”
Is the bottom line on these vague symptoms this: “Don’t ever give up.” ? And this too: “While there’s life, there’s hope” so keep searching. Being given “a box” is a comforting thing. For one thing, there’s protection, protection of a diagnosis. Once you have a diagnosis, you can move forward in that direction, rather than being “exposed outside the box” with no definite way forward.
Moving forward might include spinning your wheels sometimes, we’ve found! But right now we’re sitting still, waiting on evaluations from Dr. Hepworth and Dr. Hui… Good things take TIME.
Very well stated, @GeorgiaKay. Thank you for sharing constructive & positive thoughts!
Hi!
Nice to meet you virtually 
I agree with you 
I met with a total of 12 specialists, the last three diagnosed me with VES. In Canada, this condition is overlooked, under diagnosed, and unknown.
Take care!
Audrey
We’ve been saying it for quite a while now on here, that we don’t think ES is that rare, just under-diagnosed…and many of the members here have diagnosed themselves through research online, if it hadn’t been for that, they’d still be in the dark, or outside the box as @GeorgiaKay says.
It’s about time those figures got updated!!