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Eagle Syndrome - Online Support Group

Diagnosing Eagle's Syndrome


#1

I am going to skip the “Not a doctor” disclaimer. You are probably here seeking answers to a life changing malady a variety of doctors haven’t been able to help you with. Instead, I’m going to offer a different disclaimer— You have a real medical issue. This site is specific to ONE endpoint. There are people here who, like myself, had years and years of struggle until we found our life changing cure, but just because our initial medical struggles and problems navigating our healthcare systems may sound very familiar, that doesn’t mean we necessarily have the same cure. Eagle’s is one of many possible diagnoses. Don’t guess, and don’t cling to any one diagnosis—a wrong diagnosis isn’t a path to feeling well. Always pursue the most likely one–once you prove you don’t have that, go on to the next most likely. DO NOT GIVE UP.
In retrospect, here is my decision tree about pursuing a diagnosis for Eagle’s Syndrome.

  1. Do you have unilateral (one sided) or non symmetrical (Both sides but not mirror image) signs and symptoms of cranial nerve dysfunction? Do the signs and symptoms change with head turning/flexing?
  2. Have other more likely causes been ruled out? (There are many, mostly headache disorders. One, Chronic Paroxysmal Hemicrania, is worth mentioning here because it will mimic Eagle’s. It is dramatically relieved by a simple course of Indomethacin. Very easy low lying fruit)
  3. If both of those are true–go get the 3D CT reconstruction of your styloids and hyoid and show them to an ENT familiar with Eagle’s.
  4. Do all you can to prove a connection between your suffering and elongated/deviated/calcified styloid–ie do you have symptoms of a compressed glossopharygeal nerve, and does the styloid compress that area? Are blood vessels compressed? Can you do a flow study?
  5. Stellate ganglion blocks can provide evidence of cranial nerve compression, and might even make things tolerable–discuss with your doctor
  6. Here’s the biggie. The only way to PROVE your styloid is causing your problems is to surgically remove it. This is a major surgery and ending up with half your face drooping or a numb tongue or first bite syndrome is a real possibility. Most people with an elongated styloid have no problems at all. Surgical failure is common so GO TO AN EXPERIENCED EAGLE’S SURGEON— we paid cash and it was worth it. If the only way to really prove Eagle’s is a successful surgery, and you go to an inexperienced surgeon that might not resect the entire styloid or does sloppy work so there’s more scar tissue after, you will have a really hard time figuring out if you’re still suffering because of a wrong diagnosis or a failed surgery. Put the odds in your favor by only getting surgery by an experienced styloidectomy surgeon so you reduce one of those two possibilities as much as possible.