Hi everyone, I’m new here and feeling quite lost, so I’m hoping to hear from anyone with a similar history.
I’m 27 and based in Sydney, Australia. When I was around 5, I had significant trauma to my right cheekbone just below my eye. I still have an indentation there and developed noticeable facial/jaw asymmetry as I grew, with the right side appearing less developed and a crossbite. I’m now waiting to see a maxillofacial surgeon regarding this.
I also had grommets as a child, including surgery to remove one from my right ear, but neither my ears nor jaw caused significant issues growing up. Most of my problems have developed over the last 3–4 years.
About a year ago I was told I may have early Ménière’s disease due to my ear/vestibular symptoms. I later started TMJ physiotherapy, but my symptoms became significantly worse. I felt that some of the manipulation/attempts to realign my jaw and neck aggravated something structurally, although obviously I can’t know for certain.
My symptoms are predominantly RIGHT sided:
- Jaw and upper neck pain, particularly underneath/behind my ear
- Significant trapezius, shoulder and suboccipital pain
- Tinnitus/ear buzzing, pressure and sometimes pulsing
- Dizziness, floaty sensations and feeling like I may faint
- Headaches and head/eye pressure
- Significantly jaw clenching and grinding.
- Tingling/nerve sensations and episodes of numbness/tingling affecting my right arm and leg
- Throat sensations and an unusually sensitive gag reflex
- Light and sound sensitivity
- Periods where my nervous system feels extremely “high alert”, with intense anxiety and sometimes palpitations
My CT showed bilateral elongated styloid processes/ossified stylohyoid ligaments. On the RIGHT, my non-dominant internal jugular vein is mildly compressed between the right styloid process and C1 lateral mass, measuring approximately 3 mm AP at the point of compression compared with 6 mm more superiorly and 4 mm more inferiorly. My dominant left IJV is not compressed. Most of my symptoms are also right sided.
After waiting months, I finally saw Prof Michael Elliott in Sydney after seeing his name mentioned on this forum and knowing he has experience with Eagle syndrome.
Unfortunately, I left the appointment more confused than when I arrived. Straight off the bat, before he had properly gone through my notes, I felt like I was being quizzed about why I was there and why I thought I had Eagle syndrome. I became extremely upset and was in tears for most of the appointment, which made it very difficult to advocate for myself.
He told me he didn’t think I had the vascular form because, in his opinion, my veins looked good on the CT. By the end of the appointment, however, he did say that I could have Eagle syndrome and that surgery was an option, but that it may not improve my symptoms.
I completely understand that compression on imaging doesn’t automatically mean it is causing my symptoms and that surgery cannot guarantee improvement. What has left me struggling is that I came away without much direction or further investigation into whether the compression could actually be clinically significant. I thought there may at least be discussion about dedicated venous/3D or dynamic imaging, but nothing further was recommended.
I also don’t feel comfortable returning to Prof Elliott after my experience at the appointment, so I’m now looking for a second opinion.
I’m particularly curious about nerve involvement. Has anyone experienced glossopharyngeal or vagus nerve irritation with Eagle syndrome? I have the sensitive gag reflex/throat symptoms and periods of intense “high alert” anxiety, and I’ve wondered whether nerve irritation could contribute, although I know these symptoms don’t prove vagus nerve involvement.
Has anyone experienced a similar combination of predominantly one-sided symptoms, IJV compression, pulsatile tinnitus, dizziness/presyncope or nerve symptoms? I’d really appreciate recommendations for another specialist in Australia, as I’m feeling quite lost about where to go from here.
