I posted earlier here asking if I should get a re-read of my CT or a new scan. For anyone who saw that, I’m now sharing my full story here.
When I sat down to write this post, my original plan was to share my full story and then condense it. But I realized I’m not really posting this for everyone else — I’m posting it for myself. Writing it out is part of my own self-care. Like many of you, this journey has been one of the hardest things I’ve faced, and putting it into words feels like a step toward some healing.
I’ve struggled with TMJ for over 25 years (PT a few times, soft food diets, braces a second time, a bite splint nightly etc.) and migraines for almost as long (Botox, preventative meds, acute meds). I was recently diagnosed with Hypermobility Spectrum Disorder (HSD), and I have an appointment in March with a doctor who specializes in Ehlers-Danlos Syndrome – Hypermobility (hEDS). Between the TMJ, migraines, and hypermobility, I’ve had a lot of the same symptoms that overlap with Eagle Syndrome: headaches, earaches, tinnitus, neck pain, facial pain, etc. That makes it hard to know exactly how long I’ve had ES — I just know when things started really affecting my quality of life.
About 2 years ago:
When I lay flat (no pillow) and lifted just my head, something on the left side (tendon, muscle, ligament?) would pop up over my lower jaw and snap back down like a rubber band. I thought it was just another TMJ symptom. It didn’t hurt, so I ignored it. With hypermobility, your body does all kinds of “party tricks,” so I didn’t think much of it.
A couple months later:
I started choking occasionally while eating, felt dizzy, had more jaw pain, pain on the left side of my face/neck, and my jaw was deviating left when opening and closing. My TMJ looked like it was subluxing. Since I’ve had TMJ issues for years, I went back to an oral & maxillofacial surgeon thinking it might be time for surgery. My MRI and CT showed moderate structural damage. I was able to reproduce the “rubber band” popping sensation in the office, but the surgeon had no idea what it was. She suggested an arthrocentesis to flush the joint and look closer.
Right after that, we went on vacation. By the time I came back, my voice was giving out every day, painful to use, and it felt like a vice grip on my throat. I’m an ASL interpreter, so losing my voice meant I could only work a couple hours a day. I put the arthrocentesis on hold and focused on my voice.
The first ENT scoped me (up my nose and down my throat) and said it was gastroesophageal reflux. That didn’t sit right, so I went to GI. An upper endoscopy showed I was misdiagnosed — I was on acid reflux meds I didn’t even need. Meanwhile, the neck pain and strain from talking triggered my migraines and even brought on a new kind of headache. A simple head roll or looking over my shoulder would cause a horrible pop, pain would shoot behind my eye, and then I would have stabbing pain at the base of my skull.
I told my neurologist exactly what was happening. He laughed, told me “that’s not how headaches work,” and dismissed me. What I didn’t know then was that I had developed Occipital Neuralgia (ON). I begged him for a CT of my neck explaining that it felt like something was stuck in my throat — it came back “normal.”
At that point, I was barely working, cycling through the ER and infusion center, getting migraines 3–4 times a week. My husband and I googled everything, desperate for answers. He stumbled across “Muscle Tension Dysphonia.” I saw a second ENT who specialized in it — he scoped me, diagnosed MTD and said my vocal cords were not working properly, said I needed speech therapy, and walked out. I chased him down asking why it happens, and he just said, “We don’t know.” I tried speech therapy once but my gut told me this wasn’t it. This was only a secondary diagnosis.
Six months later:
I went back to the oral surgeon and finally had the arthrocentesis. My TMJ felt better for a few weeks, but she couldn’t explain the deviation, popping, or “rubber band” issue. She chalked it up to ligaments. At that point, I still didn’t have the HSD diagnosis.
A few weeks later, my PCP ordered an MRI of my neck — moderate degeneration showed up. She sent me to PT, and at my first evaluation the therapist explained occipital neuralgia. Just lightly pressing triggered a flare. I later asked my ortho surgeon (who was treating me for my back) if they treated ON, and they did. I had my first nerve block, then a week later trigger point injections. Finally, I felt some relief from the headaches. PT didn’t help, though, so I stopped after 8 weeks.
Next, I tried a chiropractor who combined PT, manual therapy, dry needling with TENS, and traction. As long as they did traction, my voice and neck pain eased up, but the relief didn’t last.
I also found a new neurologist who took over treating my migraines and ON. By then, I had my HSD diagnosis and started learning about the link to craniocervical instability. I thought maybe that was it, but the upright MRI came back normal.
Then came the dizziness — sudden and intense. I got motion sick from my own driving, constant ear pressure, tinnitus (worse in the left ear), and I could hear my heartbeat in my ears when lying down. A third ENT ran a ton of vestibular tests — all inconclusive. I ended up diagnosed with Third Window Syndrome (part of the bone in my inner ear is missing), but that only explained a few symptoms.
Things got worse:
Vision changes, daily swallowing issues (food coming back up and out my nose), trouble breathing in certain head positions, high blood pressure (150/100), tingling/heaviness in my left arm, pain and numbness when taking BP on that arm, and a popping sensation deep in my chest under the collarbone when lifting my arms.
My doctor sent me to cardiology. They put me on two BP meds (twice daily) and did a CTA of the thoracic area plus upper extremity ultrasounds looking for vascular TOS. Everything came back normal. My PCP now wants me to go to GI for the swallowing, even though last year my scope came back normal.
I posted my symptoms in a TOS group, and someone mentioned Eagle Syndrome. The second I read the symptoms, I started crying. It is almost every symptom that I am experiencing.
I started doing research and found you all! As I sat down to write this post, I went back through my testing from last year and remembered the CT Soft Tissue Neck with Contrast. The report didn’t mention styloids or calcified ligaments, probably because it wasn’t requested.
I saw my 3rd ENT yesterday. She agreed my scans should be re-read for Eagle Syndrome. She said my styloids looked just slightly over 3 cm and didn’t think the ligament was calcified, but admitted this wasn’t her specialty. All day today, the pain from my TMJ down the side of my face is worse than ever. I can feel swelling inside. Plus my husband said he noticed that the veins in my left hand have been bulging the last couple of days while the right hand looks normal. I decided to call back and request a new CT scan.
I have never wanted a diagnosis more than I want this one. I just need to know what’s wrong with me.
