Does this seem like I have eagles syndrome? Desperate for answers

General
1

Hi everyone, I’ll keep this short and concise. Since January I’ve had extreme anxiety about having cancer, specifically of the salivary glands. Nothing has grown since then in 5 months. My symptoms are as follows:

  • Hard lymph node right under my ear (or it seems hard because of my styloid pushing on it)

  • When I put my finger under my tongue in the back of my mouth, I feel weird bumps and also a long ligament which seems like its coming from my ear.

  • When I put my neck down and feel under my tongue on both sides, I feel a hard bone in the back of my mouth under my jaw or under my tongue.

  • I have pain that comes and goes in my jaw, also pain in my temple and pain above my jaw bone. I also have a habit of cracking my jaw.

My main question is, does anyone here with eagles syndrome have a hard lymph node because of the styloid pushing on it?? Thanks guys. I have been worried about this for too long. I’ve got an ultrasound on the node and they said it wasn’t enlarged, but I can feel it and its very hard like a rock. Hasn’t grown though. The anxiety I have had for 5 months is ridiculous. Thanks so much for your input.

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Sorry to hear about your situation, zseroz.

To diagnose Eagle syndrome, you need a CT scan of your neck, to check for elongated or deviated styloids and/or calcified stylohyoid ligaments. As far as I know (disclaimer: I am not a doctor), ultrasound is not very useful to diagnose ES, and a blood test doesn’t help with ES either. Some people have had luck getting diagnosed with a panoramic dental X-ray.

It’s possible that you have ES. I think some ES patients on this forum have had enlarged or hardened lymph nodes, but by no means all. Jaw pain is also another possible symptom, and yes, some ES patients can feel the styloid or ligament in their throat.

Trying to diagnose based on symptoms alone isn’t very productive, since ES can manifest with many different symptoms depending on the patient.

It is also a “diagnosis of exclusion,” meaning it’s diagnosed by ruling out other causes. So even when your CT scan shows abnormal styloids or ligaments, you can never be absolutely sure you have ES unless you have surgery and your symptoms are relieved.

My advice is to get your doctors to order the CT scan ASAP. From what you say, you’re in a limbo state of uncertainty where you’re going in circles, the only way to get out of it is to get that scan so you can at least see if ES is a possibility.

If you get the CT scan, make sure the radiologist measures your styloids, notes any abnormal angulation, and notes whether the stylohyoid ligaments are calcified. The radiologist sometimes will omit to do this because they don’t always know about ES.

This info should all be contained in the radiologist’s report, and if it’s not, make them reread the scan and include it in the report. Good luck!

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Callove’s said it all! Very good advice… there have been quite a few members who’ve had enlarged lynph nodes & also salivary gland problems- I did & it was during investigations for that they found I had ES.
Have a look as well at the Doctors List in the Doctors Info section (2017 is the latest one), & then ask to be referred to someone on the list- not sure how your system works in the US (I’m UK)- we have to be sent for a CT by a consultant i.e. an ENT or a Skull Bse consultant, can you be sent for a CT from your PCP or would you have to go through an ENT doctor?
I can understand your anxiety, it’s pretty scary finding a hard lump like that in your neck- have a read through the Newbies Info section about common symptoms & it might help… ES is not a great diagnosis to have, but it’s definitely better than cancer!
Let us know how you get on! :grinning:

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Callove’s said it all! Very good advice… there have been quite a few members who’ve had enlarged lynph nodes & also salivary gland problems- I did & it was during investigations for that they found I had ES.
Have a look as well at the Doctors List in the Doctors Info section (2017 is the latest one), & then ask to be referred to someone on the list- not sure how your system works in the US (I’m UK)- we have to be sent for a CT by a consultant i.e. an ENT or a Skull Bse consultant, can you be sent for a CT from your PCP or would you have to go through an ENT doctor?
I can understand your anxiety, it’s pretty scary finding a hard lump like that in your neck- have a read through the Newbies Info section about common symptoms & it might help… ES is not a great diagnosis to have, but it’s definitely better than cancer!
Let us know how you get on! :grinning:

5

Thanks everyone. I am sorting out insurance then I will go to a head and neck doctor to get the scans. Absolutely, I’m hoping it’s eagles and not cancer. I’ll keep this Updated. If it was cancer wouldn’t it have grown by now? My neck on the right seems more straight because of the lymph node. I know you guys can’t give me exact answers but it’s all I got until I can see a doctor. Thanks for the help I really appreciate it.

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I had EVERY single one of the symptoms you listed among many others! Cancer was a concern for me as well because I’ve already gone through one round of cancer 5 years ago. I had soooo many various diagnostic images that never showed anything. I am now 6 weeks post Eagles syndrome surgery and those symptoms are gone.
I know it’s hard but try not to worry. My mama always told me worry when there’s actually something to worry about. It only robs you of peace. :grin: Best of luck to you on your healing journey.

1 Like
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Yes I had lymph nodes up for about a year and they went down, two at the back of my head and one behind my ear and then guess what about 3 months later the ES symptoms started. They can enlarge from inflammation.

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I had what I thought was a clogged salivary gland under the left side of my jaw. It caused pain that radiated down the front of my neck. My doctor prescribed antibiotics thinking it was an infected salivary gland but I didn’t take them because it didn’t feel infected - just hard & painful. Another doctor said the lump felt calcified & sent me to an ENT who diagnosed ES. The hard lump I was feeling under my jaw was my styloid process. I could also feel it at the back of my tongue & in my throat.

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I have the same symptoms. Mine is on the right side and my lymph are swollen too.the lymph node near my ear and under my jaw get swollen all of a sudden.The styloid bone can scar the near by tissue which results in the near by lymph nodes to swell.If it was cancer , the lymph nodes would never get soften and it will keep growing.My lymph nodes stays hard for a week or so and then get back to normal state. This cycle has been going on for the past one and half years.I too can feel the styloid bone under my jaw and not a single doctor has acknowledged to what I say.I am not sure if its because they are not much aware about ES or they simply don’t care to what we say.