I figured I would share my bilateral Eagle Syndrome journey. I’m still ambivalent about surgery because I’m nervous and my symptoms are episodic/cyclical for 3-6 weeks of feeling completely fine and 3-6 weeks of feeling awful. I would love some input from people who have cyclical/milder symptoms and had surgery, was it worth it? Did your episodes resolve?
Thanks for any helpful comments! Now for my story.
September - December 2020
- Saw PCP and Neurologist for :
- Paresthesias and Pain in Neck and Face
- Temperature changes in arms and hands and legs
- Difficulty Speaking and Articulating words
- Brain Fog
- Feeling of drunkenness
- Got a Brain, Cervical, Thoracic, and Lumbar MRI, tons of blood tests looking for causes of neurological diseases. Given a clean bill of health
- Note: I went back to look at my spine MRI and they focused my spine so you couldn’t see the styloid.
- Neurologist said it was most likely temporary spinal toxicity, but I should go back every 6 months for 2 years to get a neurological exam.
- Saw PCP and Neurologist for :
March 23, 2021
- Saw 1st ENT
- Upper Right Neck Pain and Tightness
- Everything feels like it’s being knocked left when I swallow
- Tinnitus and tension sound in my Right ear when I touch the right side of my neck or face.
- Sporadic Tinnitus flashes in the left ear (Loud high-pitched tinnitus that slowly diminished in volume and vanished within 30 seconds)
- Pulsatile Tinnitus in both ears when I lay down (dismissed because I have hypertension)
- ENT did a flexible laryngoscopy and said it was most likely musculoskeletal and sent me home with Advil and a referral for Neck PT
- Saw 1st ENT
Over the next year saw my PCP, Dentist, Derm, Ophthalmologist, and ENT a couple of times for episodic occurrences (3-6 weeks):
- All the above-mentioned symptoms.
- Headaches on the right temple and above the right eye.
- Pain and tightness in the right upper and lower neck going into the arm, chest, and shoulder.
- Right face and jaw pain (No TMJ according to the dentist).
- Shocks to jaw-like and under by submandibular gland
- Sensation of having something stuck in the back of my throat near the right side of my tongue
- Sensation of having something stuck in the right side of my throat (thyroid cartilage level) aka Globus Laryngeus
- Discomfort and Pain on the right side of the throat at tonsil level while swallowing (feel like everything goes left.).
- Right ear itching and sharp pain
- Left ear itching and sharp pain
- Abdominal Pain shocks
- Heart Palpitations (had Ziopatch in July 2022, Echocardiogram Dec 2022)
- Right Facial touching causes paresthesias intermittently
- Paresthesias in running up scalp from occipital and mastoid areas
- Pain in the right side of my throat when I yawn.
- Pain when swallowing while looking to the sides.
- Sensation of my scalp being touched by something that’s not there.
- Worst symptoms:
- Brain Fog
- Fluctuating Right eye blurry vision (got glasses)
- Dry eyes
- Sensation of being woozy or drunk all the time
- Losing the ability to pay attention for extended periods of time
- Difficulty remembering things and paying attention during conversations
- Flashes of severe dizziness (1-3 seconds episodes very rare but extremely disorienting.)
- Bilateral face upper lip and cheek numbness and tingling (on multiple occasions I’ve told my wife to be ready in case I have a stroke)
- I had tons of CT scans and blood tests but no one ever listened to me that the symptoms were in my neck so I ended up with a Fibromyalgia diagnosis.
- I also saw a second ENT during this time and after a flexible laryngoscopy said everything was fine and sent me home.
More severe episode began on October 9th 2022 made an appointment the 2nd ENT:
- All of the above-mentioned symptoms
- Stabbing pain in my throat on the right side when swallowing and yawning
- The pain was so bothersome that I decided to feel around in my throat where the pain was located and found a small tusk-like protrusion hugging the entire length of my tonsil
- When I touched it all of the symptoms I mentioned happened all at once and took a day and a half for the symptoms to lessen. Living off cough drops and tizanidine right now.
- Upper and lower right neck pain radiating into my right trap, shoulder, and pec
- Tingling and pain shock sensation shooting across the right side of my face and along my jaw
- My larynx also started to click during this episode (my thyroid cartilage started to get caught on my hyoid bone every time I swallowed.)
- Worsened when I lower my chin towards my chest or turn my head left
- My thyroid cartilage snaps back into place but sometimes gets stuck on the hyoid and I need to push my thyroid cartilage to the left to “dislodge” it.
- This alleviates most of the symptoms including the ones from my styloid
- Touching my face causes the sensation of the touch to stay there for prolonged periods of time.
- Right side headaches every night
- Right Ear itching and pain and popping when I swallow
- Lightheadedness and dizziness
- Difficulty speaking, recalling, and brain fog
- Brain fog and inability to pay attention
- Worsening vision in my right eye and seeing lights (I got glasses in July they were working great now my right eye is seeing somewhat blurry even with the glasses.)
- Right face fullness and numbness when I bend forward. When I come up face tingles
- Face numbness on left side with tinnitus intermittent
Doctor said that I keep coming back for the same issues to the ENT office so she ordered a Neck CT with Contrast.
Follow Up Appointment Dec 27, 2022
- ENT said that the radiology report didn’t show anything and that I have a “small tonsil stone” in both of my tonsils but didn’t let me see the CT scan images.
- Note: Later when I finally got access to my CT scan it turns out that it was actually the tip of my styloid in both tonsils
Second opinion with the Head of the ENT department at ENT 2’s office (January 11th 2023):
- This doctor told me the same thing ENT 2 said that it was a tonsil stone and that the CT scan was negative for anything concerning.
- I pushed and it took him 6 attempts of sticking his finger in my mouth for him to finally feel the tip of my styloid by my right tonsil.
- After 2 years and 3 ENTs I was finally diagnosed with ES and offered surgery.
While this doctor that diagnosed me has the pedigree I would be comfortable with getting surgery with. I first decided to get another opinion and made an appointment with Dr. Annino at BWH which is on February 27, 2023.
3D Reconstruction Bone:
Shortened distance between Thyroid and Hyoid:
3D Reconstruction Vascular:
Posterior Colateral view:
Right IJV (Mild/Moderate Compressions waiting for Dr. Annin to confirm):