My Eagles Syndrome Story

[lsheep]

Hello All,

I have been a lurker for the last week or so and finally decided to join. I was diagnosed with Eagles Syndrome in the last week and the road has been a long one to get here. I am a 35 year old self employed, wife and mom to an adorable three year old. I will give you an abbreviated timeline as my journey to get a proper diagnosis has been a lengthy one.

April 2023, noticed weird sore throat and ear pain / pressure. Urgent care visit thought ear infection, prescribed antibiotics and sent me on my merry way. No change.

July 2023, still unresolved, back at Urgent Care. Told antibiotics and steroids would clear it up. He told me to see an ENT if it didn’t clear with this round.

October of 2023, started having bouts of swallowing issues. Then I had a choking incident (thankfully I wasn’t alone with my baby). That freaked me out enough to book an ENT appt.

November 2023, ENT visit explained the following: sore throat, weird shooting neck pain randomly, swallowing issues, ear pain that got worse when I swallowed, and pressure behind my jawbone. Was told I had acid reflux and was given several medicines to try. She said the pain I was feeling was referred pain from the reflux. I had my doubts honestly but tried. I was told to stay on a soft food diet. Hearing test and scope found nothing.

January 2024, follow up with ENT and no change in symptoms. She said keep taking the meds and she would see me in March.

March 2024, no change and I asked about if it could be anything else. She was rather short and told me these things take time to fix… told me to call for a follow up with any issues. I left feeling very defeated.

From April 2024 until January 2025 I don’t know if I was just so busy and yet depressed that I didn’t know what to do? My throat pain, globus sensation, swallowing issues did get worse. Basically living on a super soft food and smoothie diet. I think I just thought all the PPI’s would fix it and I would wake up normal one day. I went to the dentist October 2024 and they offered a pano x-ray and told me that my teeth were fine and it didn’t seem like I had TMJ.

January 2025, friend (who is amazing nurse herself) and I were talking and she asked if I had considered thyroid issues. I hadn’t so I called a family doctor in network and made an appointment. We reviewed my symptoms and said maybe a thyroid ultrasound would help.

April 2025, thyroid ultrasound came back as “heterogenous”, was told to follow up with an endo.

July 2025, Endo sees me, slightly enlarged thyroid on the right side. She mentioned that since my hormones were fine, I should see an ENT with this new info.

September 2025, finally get in at the ENT and the appointment was…. uncomfortable. When I brought up that I truly thought my issues were something else thyroid or otherwise, she seemed frustrated that I couldn’t accept that it was acid reflux. I asked if she could order a ct scan and was told “No, a thyroid ultrasound is gold standard.” I could feel how annoyed she was with me and it made me feel so anxious. She told me it was likely acid reflux and anxiety. My dear friend came with me since my husband couldn’t go and she encouraged me to see another ENT.

December 2025, I did some research and found an ENT who specializes in head and neck surgery, and made an appointment with him. He was genuinely caring, listened to all my concerns and even asked questions no one else had “Do you get head aches? Can you describe the pain or electrical feeling you mentioned?” etc. He asked me “Has anyone done a ct scan after all these doctors visits and your symptoms not changing?” when I said no, he visibly looked surprised and told me that would be our starting point.

January 2025, got my CT scan done with contrast. Two days later I read the report and it mentioned and flagged my styloid process and Eagles Syndrome. Got the official Eagles diagnosis and I have a follow up this Friday to discuss my options.

I have felt a roller coaster of emotions and overwhelmed. I had never heard of Eagles Syndrome but I am admittedly an obsessive researcher/reader. I started googling and came across Living With Eagle and oh my goodness I have never felt so seen. So many things that I or doctors have brushed off as (anxiety, postpartum or stress of being a new parent) may even be related! Thank you for reading this far!

[Isaiah_40_31]

Thank you for sharing your story @lsheep. I’m sorry for what you’ve gone through to get a diagnosis, but it’s a story we hear far too often on our forum.

Your left styloid is normal length but it’s thick & you have a longer section of detached calcified stylohyoid ligament below it which is most likely the bigger cause of symptoms on the left.

Your right styloid is shorter due to less s-h ligament calcification but it’s also thick up by the skull base & it’s got an interesting shape which can contribute to symptoms.

Measurements radiologists make can’t be taken as “gospel” as surgeons often find the styloids are actually longer than suggested by scans once they can see them during surgery. We think this is because there are small spaces between each CT slice that can’t be accounted for in a 2D or 3D image.

[lsheep]

Thank you for this!! I am trying not to stress because all of my symptoms are usually on my right side and I was super nervous they would do the scan on the incorrect side (they didn’t do both on the sideview). I am hoping these two images show my styloid?

Do you mind if I ask what questions I should bring to my appointment? Or have a resource on what to ask?

[Jules]

Hi & welcome, & glad that you have a diagnosis at last! I can’t label imaging I’m afraid so can’t help show you your styloids…
Your symptoms sound more like ‘classic’ ES ones rather than vascular, but if you haven’t read the info about the different symptoms have a look, as this can influence next steps:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
If you suspect you might have vascular ES, then a doctor more experienced with this is best to see, Like Dr Cognetti in PA.
Otherwise if your doctor isn’t on our list, when you see them on Friday, we have a list of questions we suggest members ask, unless it’s an experienced surgeon that many people have seen, here they are:

1. How many ES surgeries have they done and what was the success rate?
2. Whether they’re going to operate externally, or intraoral- through the mouth. Whilst some members have had successful surgeries with intraoral, external is better for seeing all the structures, to be able to remove more of the styloids, & also there’s less chance of infection.
3. You need to ask how much of the styloid he’ll remove- as much as possible is best- & anything left needs to be smoothed off. The piece needs to be removed too- some doctors have snapped it off & left it in! If the styloid is only shortened a bit it can still cause symptoms.
4. If your stylohyoid ligaments are calcified, then any calcified section needs to be removed too.
5. There’s usually swelling after surgery; you could ask if a drain’s put in to reduce swelling, or if steroids are prescribed. It’s not essential, but can help with recovery a bit.
6. Will it be a day case surgery or will you need to stay in?
7. Obviously ask the risks- we know from experience on here that temporary damage to the facial nerve is quite common, and also the hypoglossal nerve and the accessory nerve. These usually recovery very quickly but in some cases members have needed physiotherapy. There is also the risk of catching a blood vessel or having a stroke, but these are very rare.
8. Ask if the surgeon monitors the nerves- this should be done to see if there’s stress on the nerves to avoid damage as mentioned above.
9. What painkillers will be prescribed afterwards.
10. Ask about recovery- most doctors either down play it or are genuinely unaware of how long the recovery can take!
11. We have heard that occasionally doctors use surgical clips which are left in, it’s been suggested that these could interfere with chiropractic adjustments if needed post-surgery, so something to consider, and also we have now seen members who’ve been left in pain from the clips and needed further surgery to remove them, so do ask if they might be used.
    Surgery is really the only ‘cure’ for ES, there are some medications which can help with some of the symptoms, like if you had nerve pain for example, so it’s worth reading up before you go on Friday. Here’s a couple of other links to posts which might be helpful:
    ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
    ES Information- Treatment: Pain Relief, Medications and Alternative Therapies - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
    And the doctors list:
    Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
    I hope that you get on okay on Friday, let us know how it goes?

[lsheep]

Oh wow thank you so much for all of this information! I will definitely update after my appointment on Friday.

My most common symptoms:

• Swallowing issues / dysphagia
• Sore throat / throat pain (When swallowing I get a weird sharp pain that is deep in my throat)
• Right ear fullness and an irritated feeling (like the beginning of an infection.) 24/7
• Pressure and uncomfortable under right ear
• Random quick pains in the front of my throat and side of my neck.
• Tightness / uncomfortable feeling in the throat
• Random tongue pain

Oops one more to add, I have horrible anxiety.

[Isaiah_40_31]

It’s possible your right styloid is causing worse symptoms because it’s all one piece, & as I mentioned earlier, it’s somewhat irregularly shaped. The nerves in our necks are also not totally evenly distributed so those on the right side may be positioned such that the elongated styloid is in closer contact to some of them & that’s what’s causing your symptoms.

From the symptoms you’ve listed, I’d guess your glossopharyngeal, vagus, trigeminal, & possibly hypoglossal nerves are those causing the bulk of your symptoms.

I’m not sure what I’m seeing in the last 2 images you posted so can’t annotate them. In the one you put up initially, it was easy to see your styloids.

[lsheep]

I appreciate all the information you have given me, thank you so much.

I am not sure what I am looking at either but because of Eagles I am sure I will learn plenty of anatomy!

[Isaiah_40_31]

This forum is where I learned practically everything I know about ES. It’s a very educational place!