New Undiagnosed Member, My Symptoms

Symptom overview, all on the right side only:
Tight throat
Pain when swallowing nothing
Stabbing pain in the throat.
Ear pain
Jaw pain, jaw spasm
SCM spasm
Suprahyoid muscle spasm.
Massaging cervical muscles helps a lot.
Stiff tender tonsil, enlarged tonsillar lymph node.
Pain radiating to collar bone and shoulder.
Hyoid pain around the stylohyoid muscle attachment.
Mild sensations in the cheek bone and behind the eye.

Back probably around July of 2021 I went for a drive and notice a tightness in the back of my throat. I had a history of what I thought was meniere’s. I’ve had the tightness before when in the presence of environmental irritants (hot cooking oils, smoke, catty houses). It seemed to get worse and worse until I had tension on the right side of my throat when swallowing. It wasn’t too bad, but definitely concerning.

One day I was cutting vegetables for a meal (I’m tall so that means I had my back slightly arched and my head hanging forward, I also have a desk job and have forward head posture). I went to the fridge and grabbed a couple sprats to eat while I was cooking, chewed it up and went to swallow and CRUNCH, it felt like cartilage met bone (thinking thyroid cartilage met hyoid). That led to a few days of pain in my throat cartilage which resolved. I think this was uncoordinated muscles that caused that (nerve impingement anyone?).

Swallowing tension continued until I started to develop a stabbing pain in the throat which seemed to be very much hypopharyngeal. I bought a basic borescope on Amazon and had a look expecting to see some cancerous sore or growth because that’s what it felt like. I couldn’t believe what I saw… NOTHING!

After dealing with it a while I decided “Ya know what? Maybe this is GERD or something.” I made an appointment with my doctor and in the meantime I went and bought Tums and an apple just to see what happens. I took the Tums, ate the apple, had a drink and OH MY I felt better! I went to see my GP and he referred me for a GI scope and gave me PPIs.

Symptoms began to return and I noticed my right jugulodigastric lymph node was much larger than the left. Went in for my gastro appointment and it seemed like we were making a square peg fit a round hole. Yes, I have trouble swallowing. They asked what it is I have trouble swallowing. When I swallow NOTHING! When I eat food I get relief! So then they ask if large food gets stuck, no, does small food get stuck, no, do I have acid coming up into my throat, no. I went home and was expanding my throat from the inside over and over and I noticed I can feel this thing when doing that, maybe I should get out the scope and try this. Sure enough, there’s the superior cornu of my thyroid cartilage poking in. Not sure if I’ve always had this or maybe it was displaced when I had that painful swallow.

I called the GI doc and explained that I see my superior cornu poking in and asked if they’d be able to see it and they said no, so I asked my GP if we could just do an ENT first to have that looked at. The ENT took a look, saw the cornu, didn’t think it was an issue, and saw nothing else. I remember leaving telling her how bad it was and what should my next steps be. She recommended NSAIDs and warm compresses and I’m looking back at her like “That’s it? We’re done here?”

I found that putting my right fingers behind the right side of my head and using my thumb to massage behind the throat in the cervical muscles gave me tons of relief, like INSANE relief. OK, we’re looking at something muscular maybe. I also started getting more of a foreign body sensation along with the stabbing pain. It feels like something is in the base of the tongue, or between the tongue and submandibular glands, like it’s just “bigger” in that area, and it seems to hurt in the throat.

One day I was thinking about the stabbing pain and decided I was going to locate the actual pain from inside the mouth, I poked around and found that the back of my tonsil was stiff and hurt. I drained the tonsil manually and felt some kind of pop and my swallowing was greatly improved again! YAY! I let my GP know about this and asked if we could try a round of antibiotics, maybe this was always tonsil. He gave me amoxycilin, I took them, and felt much better, not perfect, but better for a few months it seemed.

One day I come back to work and the office manager asks “How’s your throat?” This just so happened to be the first day the pain came back, what a coincidence. I toyed with the tonsil and got small amounts of relief. I started to have either bad or worse days from here on out. Suddenly my jaw muscles were in spasm, my SCM was in spasm, pain radiating to the collar bone and shoulder to the point I’ve sometimes made bruises on my chest trying to massage. I contacted my GP again and suggested this may be muscular and he gave me some Flexeril to try. It seemed to help minimally.

I was becoming increasingly concerned about the lymph node and saw my GP, he sent me for ultrasound. “Minimally enlarged lymph nodes with normal shape thought to be reactive. Follow up in two months.” Brick wall.

Eventually I’m a huge ball of anxiety and so I get an appointment with a nurse practitioner as my GP was out. While waiting, I prod that tonsil again and felt some sort of eruption and a huge relief of the stabbing pain. At the doctor’s office I asked what kind of scans we can do because this is getting ridiculous. She said, go see your ENT. ENT was out so saw a different one. The girls that checked me in seemed very curious about my symptoms, the ENT comes in, down goes the scope, “I see nothing.” So what do I do? “Well, I can’t see anything.” So once again, brick wall.

Sunday I was looking at laryngeal massages for singers and got hold of my hyoid. When I grab the hyoid with my index on the left side thumb on the right, and massage it, the right side is very tender and sensitive. I massaged for a while and swallowing issues again eased up. The feeling of a growth around my submandibular glands was replaced with the feeling of the massaged hyoid, I think the hyoid was the cause of my foreign body feeling in the throat and the tonsil was just irritated.

Called my GP (my GP is my favorite of all the doctors, you can tell he listens and cares), he is now contacting my ENT to determine whether I should have a MRI or CT scan so hopefully I will have more answers soon!

I just think that all signs are pointing to either ES or some sort of hyoid dysfunction, it’s causing lymph node swelling and tonsil swelling, and I believe I felt a very small prominence in the tonsillar fossa, when palpated makes me feel the stabbing pain. Either case, I can’t wait to get my scans done so I can stop being a miserable anxious wreck!

Hi @mattoose!

Welcome to our forum! What a story!! You’ve been very thorough in doing self investigation. Good for you & so great that you’ve been advocating for yourself w/ your doctors even though some haven’t been responsive in a more responsible way.

What you’ve felt in your throat is more likely your styloid process than your thyroid cartilage. It’s the styloid &/or the stylohyoid ligament that cause the symptoms of ES. When the ligament calcifies, it becomes rigid & can tether the hyoid bone so it can’t move normally when you swallow, talk, sing, cough, sneeze, burp, breathe, etc. That in itself causes pain. The elongated styloid can tangle w/ up to 6 of your 12 cranial nerves i.e. the trigeminal (facial, eye, teeth, headache & ear pain), facial (also face pain), accessory (neck/SCM shoulder & arm pain), the glossopharyngeal (tongue, swallowing symptoms), hypoglossal (tongue), & vagus (this ones a biggy affecting everything from skull base to heart rate, blood pressure, breathing, gastrointestinal function, bladder & bowel function & anxiety levels. You might enjoy watching "Two Minute Neuroscience on YouTube. There is a two minute video for each cranial nerve. You can search them by name.

A CT scan of the neck area between the skull base & hyoid bone is the gold standard for diagnosing ES. Many doctors prefer a CT w/o contrast because the bones can be seen more clearly. A CT w/ contrast shows the soft tissues as well & they sometimes partially obscure the styloid processes, stylohyoid ligaments & hyoid bone.

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He did say he wanted a scan without contrast. I did tell him I would prefer CT and that it’s recommended by others dealing with Eagle’s syndrome. I also said that I just want my input to be just that, input, and whatever scan he and the ENT decide on is the scan we’ll do.

I have been under the assumption the thyroid cartilage wasn’t a concern, it doesn’t poke in unless I hold my nose and blow up my throat so it wouldn’t be causing consistent discomfort like that, plus I may have had that for many years.

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I agree with all that Isaiah has said, a CT is far better to get a diagnosis of ES. Otherwise see if you can get a referral to one of the doctors on our list, so you don’t waste your time seeing another ENT who doesn’t know about ES?