New Undiagnosed Member

Hi, I have not officially been diagnosed with ES, but wanted to share some of symptoms in hopes that someone else will be able to help/relate. A couple of months ago, I noticed a bony, hard, non-movable lump in my neck. It is located right below my earlobe, behind my jaw on the left side. I also can feel it if I push under my jaw.
Here are some of the symptoms I have been experiencing:

  • Left sided facial, jaw, ear, and neck pain.
    -Tingling/Burning on left side of face.
    -Frequent headaches on left side, pressure behind eye.
    -Redness in my eyes that won’t go away.
    -Just recently started experiencing hoarse voice and some minor throat irritation.
    -Feeling like there is something stuck in the left side of my throat at times, worse when lying down at night.
    -Bouts of sore/sensitive teeth. Have recently went to dentist and he could not figure out why my teeth were hurting.

I have seen an ENT and my GP and explained all symptoms to them, GP called the facial numbness Trigeminal Neuralgia and prescribed predisone for that, which slightly helped for a few days. As far as the lump, I felt like I was disregarded since I am so young (23), and was only given the option of a CT for my own “peace of mind.” I am awaiting authorization from my insurance for a CT of the soft tissues of my neck. I guess the GP thinks that it may be a lymph node, which I hope it is not. This has all given me a large amount of health anxiety over the past couple of months, and I just would like some answers, as no one seems to be able to tell me exactly what is causing all of this.

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Hi & welcome to the site!
There’s lots of info all about ES in the Newbies Guide section if you have time to read it- all your symptoms are possibly caused by ES, & there’s a section with info about symptoms & how they can be caused by styloids compressing different nerves &/or blood vessels. The past discussions can be useful too- they’re searchable by topic so you can search for some of the less common symptoms- one member recently gave an explanation for bloodshot eyes for example.
It’s good that you’re getting a CT- if you can make sure it’s evaluated for ES, so that they do look for elongated styloid processes and also look at the stylohyoid ligaments for calcification.
There are also nerve pain medications which can help, so it’s worth seeing your GP again to try those, like Gabapentin, Amitriptyline- info in the Newbies Guide about that too.
Let us know how you get on with the CT report- & if you can get a copy of the images & the report yourself it can be useful.

Hi nbreaux732 -

Your symptoms have all been experienced by people who’ve been diagnosed w/ ES (as Jules mentioned). The pain in your teeth, headaches, eye pressure, tingling & burning in your face could all be caused by an irritated trigeminal nerve. A hoarse voice & throat irritation are likely coming from vagus nerve irritation. Google those two cranial nerves & find images of the territory they cover in the body & what functions they affect. It will be enlightening for you.

When you get your CT scan, ask for some 3D images to be made as well. These will allow you to better visualize what’s going on in your neck.

I had a hard lump below my right ear, kind of behind the jaw joint & a hard lump under my jaw on the left side which I thought was a clogged salivary gland. Fortunately the ENT I chose to see was familiar w/ ES (which I had never heard of). After hearing my symptoms & feeling the lump under my jaw, he sent me right off for a CT scan, & I was officially diagnosed after that. My radiology tech included four 3D images which were a godsend as far as allowing me to understand where all my pain was coming from.

Who would I ask for this? The CT technician?

This has been the most I’ve been to the doctor in my life, I have been working in the medical field but usually I’m not the patient…I have been diagnosed with TMJ a couple of years ago, more prominent on my left side. Also, when all of these symptoms started, I also started having worse heartburn than usual.

There have been quite a few members with digestion problems, it’s possibly related to compression/ irritation of the vagus nerve.

I would ask the radiology technician before (s)he starts your scan.

Unfortunately, my insurance has denied the CT completely, even thought the doctor said that the “lump” was probably too deep to do an Ultrasound on. They want to schedule me for a soft tissue ultrasound with contrast anyways, but I am not sure if I am willing to pay for something that won’t help me figure this out in the long run.

An ultrasound can sometimes pick up any compression of the arteries in the neck, if you have vascular ES, especially if symptoms are worse in a certain position, & you can get them to do an ultrasound in that position, so that might help…but a CT is the best way to diagnose ES. I’m sorry, I’m UK, so don’t really know the US insurance system, but it would seem daft if you’re having to contribute to a test which might not help give you a diagnosis at all! Is there a way of appealing their decision at all? I know some members have appealed being referred to an expert doctor for treatment out of state or insurance group, but never heard of anyone being denied a CT. So frustrating & I feel for you…

nbreaux732 - I’m SO SORRY to hear that your insurance is not being cooperative. That’s horrible!! I agree w/ Jules - I’ve never heard of an insurance company being unwilling to pay for a diagnostic CT scan especially for something like ES. I would appeal it & have your doctor appeal it if (s)he is willing. I also agree that paying for an ultrasound which is unlikely to help w/ your diagnosis is just silly.

Maybe your insurance company is unclear about what Eagle Syndrome is & needs to be set straight. Might be worth a call to them to see if that’s the issue.

I’ll be praying you’re able to get an insurance covered CT scan ASAP!!

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I technically am able to appeal the denial, but it is a lengthy process that would take time and money, unfortunately. In the letter I got from my insurance company, sounds like they will only do a CT if I would have a cancerous lymph node. It is very frustrating, and sometimes I wonder why I even have insurance, haha!

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That is just lame! A cancerous lymph node might not even show up in a CT scan unless it was a CT w/ contrast. You don’t need the extra cost & risk of contrast to detect ES!!!

Wish we could go to bat for you!

Right! I just got the results of my ultrasound this morning, and the report said that they found a 8mm X 3mm node, which they said is normal sized. They are sending me to an ENT for a second opinion, which is a little confusing. But what’s more confusing is that this “lump” I’m feeling is way larger than the size that they got. I feel they may have picked up the lymph nodes on top of the larger lump, if that makes sense.

Let’s hope that the ENT will listen to your concerns & might be able to get you that CT! Measuring with imaging doesn’t seem to be too accurate at times…

I hope this will be the doctor to hear me out. I think what they may have caught on the ultrasound is the lymph node under the big lump. I’m going there with a list of questions/symptoms so hopefully he will hear me out.

Yes, I also started having horrible GERD. And also my salivary glands blow up, mostly on my left side. I’ll have to find two pictures to share where I am normal and where I am swollen. So swollen that I can’t see my ear. I am also a new, undiagnosed patient. Nice to meet you, nbreaux732.

Hi dharmadel!

Welcome! I’m glad you found us!

Have your checked the US Doctors’ List for a doctor in your state? Seeing someone who’s familiar with ES will go far toward getting a diagnosis more quickly.

No, but I was told the name of one here in Florida and it is not that far from me so I have some research to do! My ENT is also researching, I am sure!

Nice to meet you as well. Hopefully we will both get some answers.

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I did end up seeing the ENT again last week, and he ordered the CT and it finally got approved. He seemed more concerned about my severe TMJ on the left side, than this lump in my neck. I did the CT yesterday, now I am just waiting on the results.

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