Hi everyone,
My name is Otto, I’m a 20-year-old male from Brazil, and I’ve spent the last two and a half years trying to figure out what is happening to my body. After seeing more than a dozen doctors across several specialties, I now strongly suspect Eagle syndrome, and I would really value this community’s perspective on my case, my CT findings, and some 3D reconstructions I made from my own DICOM files.
Everything traces back to a tonsillectomy I had about two and a half years ago. For the first few months I was fine, but somewhere around three to five months post-op, strange symptoms began to appear. The earliest one was in my eyes: a subtle, almost phantom pressure on the left side that I struggled to put into words. Over time it progressed into genuine pain, became a daily occurrence, and eventually spread to both eyes. My vision started feeling wrong in a way I couldn’t articulate at the time.
Not long after, a very similar phantom pressure appeared on the left side of my neck, as if a finger were pressing into the infra-auricular and submandibular region, high in the anterior cervical area, essentially right where the styloid process sits. That sensation escalated the same way the eye symptoms did. Today the picture includes frequent neck stiffness and pressure, cervical discomfort concentrated on the left, marked tension in the anterior neck muscles, and near-daily twitching or fasciculations in that same muscle group. The region is tender to palpation, and pressing certain spots can actually set off a pain flare. Swallowing often hurts, with a needle-like stabbing near the Adam’s apple, and I get submental pain that at its worst feels like a Phillips screwdriver being twisted into the muscle. A persistent globus sensation in the throat rounds out the list.
The head and ear symptoms came along with all of this. I have fairly intense headaches almost every day, and certain positions, like crouching down or holding my neck a particular way, can trigger a flare of head pain accompanied by dizziness, visual disturbance, and strong pressure in my head and eyes. About a year ago my ears started clicking frequently, and when I lie down I often feel a rhythmic throbbing in my ear that matches descriptions of pulsatile tinnitus quite closely.
The ocular symptoms deserve their own paragraph because they are the most debilitating part of this whole picture, and the most thoroughly investigated. Multiple ophthalmologists, including a neuro-ophthalmologist, have ruled out primary ophthalmological causes one by one. What they did find was Binocular Vision Dysfunction, with orthoptic testing showing a considerable degree of convergence insufficiency. In hindsight, I believe the “indescribable” visual sensations from the beginning were a phoria, something I never had before any of this started. I completed roughly six months of vision therapy without significant improvement. Beyond the binocular issues, I deal with strong light sensitivity, frequent eyelid twitching, heavy ocular and retro-orbital pressure, and at times a sensation as though my eyes are about to burst or be pulled out of their sockets. One detail that keeps pointing me toward Eagle syndrome is that everything fluctuates together: on bad days the neck, throat, and eye symptoms all intensify at once, and on good days they can be mild or nearly absent.
Getting to this hypothesis took a long time. Over these two years I saw ENTs, neurologists, orthopedists, a rheumatologist, several ophthalmologists, and eventually a psychiatrist, since my neurologist didn’t seem to believe my pain had a physiological cause. After many dead ends and a few incorrect diagnoses, I sought out Dr. Irlon Oliveira in Curitiba, one of the few doctors in Brazil with real experience in Eagle syndrome. Following an online consultation, he ordered a cranial and cervical CT with venous and arterial angiography.
The radiology report reads: “Partial calcification/ossification of the cranial portion of the stylohyoid ligaments bilaterally, slightly more pronounced on the left. The stylohyoid complex measures approximately 29 mm on the right and 31 mm on the left. No compression of the internal carotid arteries or internal jugular veins is observed***.***”
By the numbers alone, the length doesn’t scream elongation. What catches my attention, though, is the thickness. Comparing my scans with images other members have shared, my styloid process looks unusually thick to me, but I fully admit I don’t have the expertise to judge that. I pulled my DICOM files and put together some 3D reconstructions on my own computer, still very much learning as I go, and I would love to share the screenshots here. Does thickness or calcification pattern stand out to anyone with more experience reading these scans, even in the absence of dramatic elongation?
Thank you for reading this far. Any insight is genuinely appreciated.
