I’m new to the forum and wanted to introduce myself and see whether anyone here has had a similar situation, particularly involving tinnitus.
My Story:
Elongated/calcified styloids, severe somatic tinnitus, rear jaw/neck discomfort, and a small but stable acoustic neuroma. Unsure on styloid reduction surgery success given my situation.
My main problem is worsening tinnitus, which went from being hardly noticeable to affecting quality of life over roughly the last 12 to 24 months. The back of my jaw/neck doesn’t have sharp pain, but in the last year is now tight, sore, and aches. Some days are worse than others.
Complicating things, I also have a small right acoustic neuroma. It is located at the fundus of my right internal auditory canal and currently measures about 6×5 mm. In June 2026 I had a second 3T MRI, and the radiologist report said there was no significant change since with my August 2025 MRI. Although the neuroma may contribute to my tinnitus, its size has changed by 1mm or less over a year, but my symptoms have worsened a lot.
CAT Scan results:
I was issued a CAT scan order because of atypical jaw/neck pain symptoms. My June 2026 CAT scan report listed:
- “Bilateral elongated, partially calcified stylohyoid ligaments” (R:~50mm, L:~40mm)
- “Mild compression of both internal jugular veins”
- “No mass effect on the internal carotid arteries or parapharyngeal soft tissues”
My tinnitus intensity can be played like an instrument:
My tinnitus can be very easily modulated. Right-sided jaw clenching can double the tinnitus volume instantly. The change occurs immediately with muscle contraction and immediately decreases when I relax. Clenching on the left side does almost nothing. My tinnitus is tonal and sounds kinda of like “sssssss” and is coming more from the right than the left.
Neck movement affects it as well. Flexing my head over my right shoulder has a big effect. I have less effect in other directions.
Sometimes, especially with coffee, I can make out my pulse with my tinnitus. I can count my heart rate from it. It becomes more apparent if my head is tilted to the right. It’s unnerving knowing that the styloids are compressing my jugulars when laying flat on an MRI bed, and that they may compress more depending on how I move my neck. I can occasionally get a quick onset of additional volume that can fades away if I move my head. I wonder if this is due to my styloids further interfering with blood flow.
Where things stand:
I don’t think Eagle syndrome explains all my symptoms and the neuroma may be playing a small or a big role.
My neuroma is being monitored with an annual MRI. I’m in contact with an experienced base skull surgeon who has done hundreds of neuroma surgeries and he has laid out a treatment plan if it begins to grow. Thankfully, presently, I have zero facial control issues, no balance issues, and my high frequency hearing loss has been nearly perfectly stable over 24 months. (A signal to me that the worsening tinnitus isn’t just hearing loss related).
The surgeon working on the neuroma referred me to another well experienced base skull surgeon who has hundreds of patients with elongated styloids and is experienced with styloid reduction/removal surgery. He looked at my scans and indicated that I’d be a good candidate for surgical treatment and that there was some (good?) chance that I’d find some symptom relief. He strongly recommends extracting the styloids externally as opposed to orally. His experience is that patients experience shorter recoveries, less pain, and he’s less at risk in damaging major blood vessels. The tradeoff is risk to facial nerves. I’m interested in this option after first trying some lower risk options like Celebrex (which I just picked up). I’ll probably also get a second surgical opinion. I’m in Michigan, but I am not opposed to travel. I fortunately have ok insurance. This set of symptoms is awful and I’m willing to invest in treating it.
I paid for a license for the RadiAnt software and have access to my MRI and CAT DISCOM data. I can post whatever is helpful for discussion.
I’m interested in hearing from people who had tinnitus associated with Eagle syndrome, especially anyone whose tinnitus:
- Was strongly affected by jaw clenching
- changed by moving your neck
And for those who eventually underwent styloidectomy: Did your tinnitus improve along with your other symptoms? If so, was the improvement immediate or gradual? Did you have any vascular imaging that helped establish that the styloid was actually responsible?
Thanks for reading. I’m still very much in the information-gathering stage and would appreciate hearing from anyone whose experience resembles this.
