Newly Diagnosed With Eagles Syndrome

I have been in terrible pain and experiencing unbearable discomfort for the last 4 years. In that time, I’ve had 3 sinus surgeries trying to fix the problem. No resolve. I was tossed around between about 6 different doctors at the hospital’s Department of Otolaryngology (Ear Doctor, Cheek Sinus Doctor, Forehead Sinus Doctor, Larynx Doctor, Voice Doctor, Swallowing Doctor). It was exhausting. The whole time I was telling them there’s something seriously wrong with my throat and I know it. I begged them to stop dismissing me but it did no good.

Then I had two molars extracted trying to fix the problem. No resolve. Then the tension in my neck/throat/jaw was so tight, it tore a hole in the roof of my mouth where the molars were. The oral surgeon stitched up the hole in my mouth 4 different times, but a month or two later it would tear apart. The oral surgeon told me there has to be something wrong with your neck/throat because he’s never seen anything like this.

Then, I was sent to a prestigious hospital to their Head and Neck Department to close the hole in the roof of my mouth, called an oral fistula, by way of a facial artery muscular mucosal flap. After that surgery, my symptoms increased dramatically. The prestigious hospital referred me to pain management, who did nothing but offer me narcotic pain medication, which I declined, saying I wanted to resolve my problem not mask it.

Then, I was referred to a thoracic surgeon for the tension in my neck/throat. I was diagnosed with thoracic outlet syndrome. I had an absolutely brutal surgery to remove my top rib. The surgeon told me that my top rib was completely calcified and it was the worst surgery she had ever done. This reduced some tension in my chest, but did nothing to help the terrible pain and discomfort in my neck/throat/jaw.

After that, a thoracic surgeon operated on my shoulder, and released my pec minor. No resolve.

Then, I had trigger point injections, multiple nerve blocks, botox injections in my neck and trap. No resolve.

Then I was sent to pain management, who did nothing but prescribe me narcotic pain pills.

I went back to the Head and Neck Department at the first hospital and was told there is nothing wrong with me, that I should see a psychiatrist and take antidepressants. I pleaded with them, and begged them to do some sort of scan or look for something. Sadly, they were very quick to label you with an anxiety problem and treat you like you have a mental health problem.

I had to switch dentist because my previous dentist went out of network for my insurance. This week, I went to a new dentist for a routine cleaning. They took x rays and before I even spoke with the dentist about my struggles, he came into the room and said “I’ve looked at your x rays and your styloid process is severely elongated on both sides, and the left side is completely calcified all the way down into your throat You have a condition called Eagle’s Syndrome.”

So, now I’m referred back to the Head and Neck Department at the first hospital. I’m not sure why they didn’t catch this, as they took CT Scans of my head, face, mouth, and neck, along with MRI’s of my face, orbits, jaw, and neck. I’m expecting it to be an unpleasant experience trying once again to convince them that there’s something wrong with me. This has been the most challenging thing I’ve ever experienced in my life.

For the last few years the tension in my throat has been pulling down on my ear. It’s gotten so bad that it’s disfigured my ear. I’ve told the doctors this on multiple occasions and they look at me like I’m crazy. I’m curious to see if anyone else has had these symptoms and would greatly appreciate any suggestions or advice. Thank you!

I’m so sorry to hear that you have had such tremendous difficulty and pain. This forum is a great place to get support and find out more about Eagle’s. My journey has also been long, you will see that is a common story. There are different variations of Eagle’s. I have the vascular variant with a different symptom profile than yours. But if you use the search tool and search each of your symptoms you will find that you are in good company. You will also find a list of doctors who have been identified as having knowledge of Eagle’s and links to journal articles to help you understand it better. For me, a brain MRI showed bilateral stenosis and a CTV with 3D reconstruction showed the elongated styloids compressing the IJV between the styloids and C1 transverse process. For me the compression itself seems to be the problem as it causes intracranial venous congestion but for you it sounds like the irritation of several cranial nerves could be the culprit. I totally get your frustration with the classic medical move of ‘if we don’t understand it let’s put them on an antidepressant and send them to pain management’. It seems like it’s a rare doc these days that has the curiosity to try and figure it out. It sounds like you could be on the right track now. Keep us posted on your progress and take good care of yourself.


Hi & welcome to the forum!
What a crazy journey you’ve had, so awful for you to have those symptoms & still no-one takes you seriously…sadly you’re not alone with that, many members here have suffered for years to get diagnosed :unamused:
Now that you’ve been told by your dentist that your styloid processes are elongated, and your symptoms fit ES, it shouldn’t be hard to get an appointment with a doctor familiar with ES. Many doctors aren’t aware of it, so rather than waste any more time, it might be worth ringing ahead to the hospital you’ve been referred to, to see if they do treat Eagles. If not, then see if you can get a referral to one of the doctors on our list, here’s a link:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
Not sure exactly where you are, but there are several doctors in Florida, you can use the search function to see what mentions there are about different doctors in the past discussions. If you can travel a bit Dr Hackman in NC is really experienced too. Some doctors do remote consults as well so you don’t always have to travel to see them. There are some treatments which can help the pain, there’s info in the Newbies guide section here:
ES Information- Treatment: Pain Relief - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Unfortunately the only permanent treatment for ES is surgical removal of the styloids, and as it can be a tricky operation it is best to see someone with experience. There’s info about surgery here if you do want to read up on that before you see a doctor, & there’s suggestions in there of what to ask doctors as well:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Hope that you can get some help soon!

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Thank you for responding and sharing your experience. I was curious to see if you think it’s possible that the doctors missed my elongated styloid process on all of the previous CT scans and MRIs that I’ve had done. In the last 2 years I’ve had 4 Neck CT Scans, 2 Maxofacial MRIs, 2 Maxofacial CT scans, and 1 neck MRI. I was able to speak with my thoracic surgeon who told me that they might not have been the appropriate scans to look for Eagles Syndrome. Would you mind sharing your thoughts?

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@Nickhawk228 -

As your thoracic surgeon noted, it’s possible the scans you had - especially the CT scans - didn’t cover the area where the styloids are. However, my greater suspicion is that they were visible in at least some of those scans but due to lack of knowledge about ES, the doctors & radiologists who evaluated the scans didn’t know to look at your styloids, & even if they noticed them, the may not have known their significance in causing symptoms.

You’re welcome to post your images on our forum, & we can give a non-medical opinion. We for best with 3D images & prefer that you anonymize them if possible. Programs that will convert them to 3D for you are for PC & BeeDicomViewer App for Mac. Another option is to upload them to - which will anonymize them & give you links you can share on this forum.

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A lot of times it’s considered an incidental finding (some people have them with no symptoms) so it doesn’t get reported. I had a brain mri 4 years ago that didn’t mention bilateral stenosis but a report 2 years later on another brain mri notes it and referred back to the previous mri to say that it was the same as it was back then. It’s very frustrating, I know.


That’s a copy of the x ray from 3 years ago. I’m waiting for the dentist to send me the new ones.

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You can see the styloids in that x-ray @Nickhawk228 , they’re longish & quite angled, so could potentially cause symptoms!

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I guess that based on these images, I have an issue

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Nice 3D renderings, @Nickhawk228! It looks from these images, that your stylohyoid ligaments are calcified vs your styloids being elongated. The calcification is significant which can cause the same symptoms as elongated styloids do.

Yes, I agree with @Isaiah_40_31 , it looks like it’s calcified ligaments as opposed to elongated styloid processes, both can cause Eagle Syndrome.

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