Now that I am up a trust level, I wanted to share the imaging that diagnosed me!

Hilariously (or at least ironically), my dentist took this panoramic x-ray. I went in because I was sure I had a dental abscess (I’ve never had one, before) due to the severe pain, swelling and tightness in my jaw. I’d been having these symptoms on and off for about a decade, but woke up one morning without an ability to get any relief. That was a week ago, and they’ve still not dissipated. Seems the pain, tightness, swelling, eye twitching, headache and scalp pain, jaw/jeck/face/eye/ear/shoulder/chest pain, difficulty swallowing, intermittent tinnitus and so on are here to stay until (hopefully) surgery corrects most of it. Luckily, the most severe vascular symptoms (syncope with loss of consciousness) seem to only happen when I make very sudden and severe movements in specific directions - which I’m not doing, now.

This x-ray is what made my dentist sit down and say, “You don’t have an abscess. That’s good! You have a small cavity we’ll take care of eventually, but there’s something much bigger you need to address ASAP. You have Eagle Syndrome.” I had never heard of ES before, so I wasn’t exactly scared - I was confused. I went home to research and realized how serious it was, posted on Reddit (where I met others with ES - and where someone told me based on this x-ray alone it seems my entire styloid process is calcified along with the ligament) got mad that nobody else had caught it in the dozens of head/neck CTAs I’ve had in the past 7 years, realized it’s nobody’s fault because most of those doctor’s don’t even know what it is/weren’t looking for it specifically (I was being periodically checked for aneurysms, signs of dissection and other vEDS related issues) and so on. I am now searching for a surgeon (I believe I’ve found one - I’ll know more Tuesday!) and doing my best not to spiral into all of the unknowns and “what ifs?” I can conjure up, since it won’t help. I am probably taking a medical leave from work (I’ll know more about that Tuesday, as well) to have surgery and heal (and I also happen to be gearing up for a feeding tube placement surgery, so I suppose they’ll be almost back to back with maybe two weeks between them).

It’s all overwhelming, and I am so glad this community exists. When I get to the point that I can return the kindness, support, information, reassurance and empathy that I’ve already been shown by the members here, you can bet I will! Enjoy the x-ray! (My ES was re-imaged via CTA three nights later after I passed out and then had stroke-like symptoms which did not last more than a few min - it was determined that my carotid artery is NOT involved but is likely irritated or temporarily compressed when I make jerky left turns with my head.)


Yup! That’s one very thick, long & nasty looking styloid. It’s amazing it took so many years before your symptoms peaked as they have. I’ll be praying for a prompt response from Dr. Hackman’s office.


Good on your dentist for knowing about ES…it’s just mind boggling that if you’ve had regular CTAs over the years looking for signs of dissections nobody ever thought about the risk of a long pokey bone right next to your carotid artery!
Glad that you’ve found the site & it’s been helpful :hugs:


It seems like more dentists are becoming aware of Eagles and making note on it with more common use of Pano X-rays. A major Oral Health pain center missed this on mine about 5 years ago. They (radiologists) have been taught to dismiss elongated styloids and don’t connect the symptoms.
I know someone whom had stroke-like symptoms and hospitalized for a week about 4 years ago and they never could figure out the cause. She had tonsils out about year ago and the surgeon noticed the styloids almost poking out her throat. The tonsil removal made her pain worse. They treated it with nerve medications. Of course unsuccessfully. Radiologist made note on CT report recently that her styloids were “mildly elongated”. We requested a measurement. This radiologist considers 4.3-4.7cm length as mild? As many of us know, 2.5+cm is considered by some docs as Eagles territory.

Slekeille…so glad you had a competent dentist and you are on the path to addressing this! Too many of us have taken years to get here and thankfully we have this forum to help guide each other. As an FYI, many ES surgery patient s are back to work 2 weeks after surgery however I dont recommend that. Maybe part-time but I was lucky to have my surgery during COVID and took off 6 weeks the first time around. If you have the work benefits to take the extra healing time off, use it. I found I wasn’t really 100% until 8-12 week range post op.