2 and a half years of a mystery before diagnosis

Hello everyone, I am new here, and I’d like to thank you for having me!

I had happened upon this site many months ago, when I had a brief period where I thought I may have this condition. Seeing as I am newly diagnosed, I had taken the steps to reach out, and seek help about this condition, as it is quite varied, and no two experiences are quite identical.

I believe I may have had this asymptomatically for at minimum of 10 years, with an unusual first presentation, as following hyperextending my neck to “crack” it, I felt a pop. After-which, I had a strange nerve sensation like a “fluid” draining down the inside of my body, It wasn’t painful, but it was cold." I went into the college classroom after this, sat down unaware of anything causing a problem.

As I sat down, my vision started getting gray, my heart rate elevated, and I felt faint. My college professor noticed I was pale.

They called the EMTs, got put in the emergency room. They assumed a “muscle sprain” which I thought was the strangest thing.

Afterwards, I had read up about Eagle Syndrome, but never had been diagnosed, nor did I ask the provider about it. the fluid drip sensation continued for 1.3 years until this was relieved by gabapentin after a year. after I had gone through it, I assumed it was just part of my anxiety disorder.

Fast-forward to the future -

My major symptoms began in 2019, the event that set off the cascade, was when I was swallowing food, with my head angled down. I swallowed hard, and felt a painful “pop” and “pull” like something shifted and pulled way out of place. After which, I had lost some tactile sensation with what I considered to be a normal swallow. This complaint and concern started to gradually transform into a more difficult and lasting problem, as time went on, where I had forgotten what a normal swallow felt like.

During this time, I started developing residue when I swallowed solids. (Certain foods were worse than others, such as tough meats, dry foods, highly-fiberous foods like broccoli and uncooked spinach, among a greater list of foods) This was when I started seeing my primary, who started looking into what may becausing it. Over the course of 2-3 years, I had been referred to countless Ear-Nose-Throat specialists, and neurologists, speech-language pathologists to attempt some sort of recovery.

All of these were met with disappointment, non-resolution, and assumptions that my “anxiety” is causing all of this. The point where I truly knew something was wrong was when I would regularly start feeling a sharp stabbing pain, and “pull” that accompanied it, during an effortful swallow, or deep yawn. I noticed it came more when my head was turned to the right, so I stopped turning my head and would only try to swallow in a neutral position.

Eventually It got to the point where, if I did not do a gentle swallow, I would feel a strong shift, as if a bone was being pulled out of place, getting yanked and dragged down the inside of my neck, from the base of my skull. It was truly frightening, because I had never experienced this in my entire life. That was when I thought I had a physical problem, but I had been gaslighted by the medical community for such an extended period, that I just stoppped complaining, and reaching out about it to find resolution.

Many family members thought I was truly going crazy, and needed mental health treatment, because no person could relate to this difficulty, and It takes hours for me to get enough calories. My grandmother, sister, and mother were among the only people to truly believe me, as they had seen me on my worst days. I am grateful for their patience in this, however my father and many other family members expressed disappointment in me, as It became disabling. I am now nervous to confront my father, about my health issues, as he thinks I am “weak” and “spoiled” for having to rely on other family members to manage in these years of suffering.

Fast-forward to this year.

One Neurologist I had seen had in the past requested an X-ray, which never got scheduled, and so I never got the diagnostics.

Apparently he had it in his mind to look for Eagle Syndrome.

After a choking episode I had on Christmas Day this year, from dinner, I was despirate, to call and get help, despite the gaslighting. I got an appointment in 2 weeks, and he confirmed that the diagnostics were not done.

Once the x-ray was done, I was shocked. I remember tearing up on the phone, because after 2 years, I got a phonecall from one of the office staff, who relayed the message, that they suspect it was Eagle Syndrome.

I immediately met with a specialist the next week to have a consult, and get a CT scan for diagnostics, which confirmed I had Eagle Syndrome, over 60mm long Bilaterally, with calcified Stylohyoid ligaments almost touching my hyoid bone.

It would seem, that the sensation of me “swallowing a bone” had some merit, as this condition apparently is causing the calcified ligament to shift or get pulled in weird ways that is painful.

And slowly, this mystery has begun to unravel. It is a bit frightening, but at the same time, I feel some relief knowing that I am not in-fact crazy.

I am currently getting my health insurance situation sorted, and going to consider options for surgery. It is quite difficult, since I am stuck on medicaid, which significantly limits my covered doctors, due to which insurance company is contracted with each doctor.

In summary, my symptoms are as follows:

1: Reduced tactile sensation in the throat when swallowing, possibly due to restricted hyoid movement, or nerve compression (which the specialist I met with said is a possibility)
2: pain underneath the ear, that is a dull ache, that comes and goes.
3: Pain at the base of the skull that is also a dull ache, and comes and goes.
4: Trouble swallowing solid foods, with residual food debris pooling behind the tongue, above the airway (remedied by drinking fluids) - Worse when fatigued.
5: Sharp pain during effortful swallows in my bottom front teeth
6: A sharp pain behind my tonsils that occasionally arises during an effortful swallow
7: Sharp pain that feels like some bone dragging down the inside of my neck, from the base of my skull during a swallow
8: A dull ache or sharp pain at the base of my skull.
9: An "uncomfortable “Pull” that feels like it goes laterally from the base of my skull, down the side of my neck when I swallow.

I am sure that a Hyoid bone with restricted mobility or immobilization can cause discomfort when trying to swallow normally.

Part of me is curious -

Have any of you felt the sensation of a “bone” being swallowed at any point during your struggles? No amount of looking has yielded me any such result that this is a way it can present itself.

If so, I would love to hear about your experiences with such a frightening symptom.

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It’s surprising that you just posted this because I just posted my story and my diagnosis was specifically because my styloid got stuck on my hyoid bone! It’s extremely painful and as you can see in my story I would rather spit in a cup than swallow! Lucky for me a simple stretch would resolve the matter and I’d be pain free. Having felt the pain myself I can’t imagine how difficult and frustrating that must have been for you. I’d be interested what questions you might have for me after reading my story.

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I don’t know if Medicaid is state specific, but if not,I think any ES surgery done in a teaching type hospital would be covered by that insurance. Dr. Hackman is in NC & works at the UNC Hospital & has done ES surgery (many bilateral) for quite a number of our members. I’m not sure about Dr. Annino’s situation, but it is always worth calling an office to explain your situation & inquire about whether they’d take your insurance. Also, have a read through our Patient Self Advocacy info (category on the home page). It will be very helpful as you continue to navigate the medical world.

I am sorry for your situation w/ your father. Is it possible to show him a 3D rendering of your elongated styloids & explain to him that what you’re feeling is the result of these bones “tethering” your hyoid bone i.e. keeping it from moving as it needs to when you swallow. The hyoid also moves when you breathe, cough, burp, sneeze, sing, cry, talk, etc. so in some small way, all of these are impacted for you. We have a guide on our forum for making CT slices into 3D images: Making Your Own 3D Images from CT Scan- 3D Slicer Tutorial. If you have no 3D images you can make some to share w/ your family. You are far from weak for all the years you’ve endured the symptoms you have, & I’m really glad you have finally found the answer for the cause.

Thank you Isaiah!

I do actually plan on contacting the hospital that did the CT scan and retrieving a copy of the scan, so that I can share it with other providers, and family members. That is on my first-to-do list tomorrow, along with contacting Dr. Annino regarding the condition.

Medicaid is state-specific generally, due to the affordable care act, as I understand, but has to meet the federal requirements or something… don’t quote me, it’s been years haha.

supposedly the guidelines it used drew from some of Massachusett’s “Masshealth” I merely used the generalized term because it is a lot more relatable, or identifiable onto what it is.

I do intend on seeing what his office has to say pertaining to coverage. my ENT has done the procedure unilaterally, and has limited knowledge of bilateral cases. Some of the responses I heard from him have made me kind of question the extent of his knowledge, which is understandable, because of the rarity of this condition. Naturally I would want to get the best care possible that I am able to, because living like this isn’t a fun experience. I also am intending on getting some additional consultation with a speech language pathologist who has treated this condition, as it has been years since i’ve had a normal-feeling-swallow, and I may be looking at some kind of swallowing rehab.

Thank you, and I appreciate the recommendations. It hasn’t even been 24 hours and I’ve learned a great deal by reading about other peoples’ experiences, and recommendations, and points of view. It really has been enlightening of an experience.

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Wow, I just started reading your experience, The “tearing” along the right side is absolutely identical to what I experienced. I didn’t think others had dealt with similar symptoms. I will certainly give your story a read, and maybe we can share our experiences a bit more through messages.

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If you both want to write at a more personal level, one of you can start a private message by clicking on the other’s icon or screen name. That will take you to a page where you can start the PM. If you’re sharing in more general terms, please keep it on the public part of the forum so all our members can benefit.

I’m sorry you’ve been treated so horribly by non-believers and some health practitioners. It’s a long slog trying to get a diagnosis.

Yes absolutely I feel like I’m swallowing a bone stuck in my throat. Before my diagnosis I thought maybe it was a “tonsil stone” as it feels like a rock in my throat. I have similar pooling of food remnants in bottom left of tongue and thick saliva. I find I have to gargle with warm salt water to clear things out but still leaves that lump bopping around in my throat.

An acupuncturist I had been seeing was trying to figure it out, saw that my regrown left tonsil (they were both removed at 12yo) was irritated and told me to gargle as well. However even she was baffled as to what was going on.

Based on 2019 CT, my styloids were already long but I suspect that my left ligament has calcified. I’m waiting to get my 2020 CT that was for my sinuses which apparently shows my styloids but doesn’t go down far.

In Jan 2022 I burst out crying when I was told of the confirmation of bilateral elongated styloids and it’s likely ES. Everything in my gut thought it pointed to ES. Such relief with a diagnosis.

On top of my ES symptoms, every day I have to do a yawn to “release” my styloids from digging into the back of my throat. Last year I asked my chiropractor why I get that ripping noise when I open my mouth and she didn’t know. Now I know why - it’s so weird!

Thank you Siren,

It really was quite a memorable moment, discovering what I had been afflicted by. Yawning absolutely provokes the symptoms, just like a strong swallow - My saliva is excruciatingly thick on my worst nights, because It is difficult to pass saliva, I have woken up with a blockage of phlegm preventing normal breathing. Often times I have to do a throat clear in order to ensure the saliva is moving, and not adhering to itself, forming balls and bubbles. I have found that, as disgusting as it is, it, along with plenty of hydration prevents this.

All of this, I have kind of concluded is likely because of the calcified ligament preventing tongue retraction, but I have yet to meet with my Speech-Language pathologist to have a consultation about this. More-or-less, his involvement is probably going to end up as part of my recovery plan.

Fizzy drinks have been a lifesaver at times, as the bubbling really dislodges anything that gets stuck in the vallecula. It is an old trick that I had been tought, and I highly recommend it if you have trouble with it to keep at the very least a seltzer water can ready in such a case.

It sounds like both you and myself had discovered the likely cause at a similar time. Thank you for sharing, It is nice to not feel alone in the wilds with this. I’m finding that this community has a better overall understanding of the symptoms of this disease, and possible complications of it than a doctor that has only treated it a handful of times. (which is absolutely understandable considering how few people experience these symptoms)

If you want to, we can carry on this conversation in a private message, I check my message box daily!


WOW, I am only about a week into this but your story is 100% similar to me!
ive had issues with my left side before, I have a diverticulum just before my esophagus starts which is like a little hernia, but i got used to it and only choke on food sometimes so it doesnt bother me mostly. HOWEVER, a week ago, i swallowed a big chunk of food while looking down (i never do this so idk what possessed me) and i felt a SHARP pulling/tight sensation on the left side of my neck, like adjacent to where the thyroid is/adams apple area. its still going adn ive also had weird tight feelings along my jaw and under my ear. i now have sharp pain in that spot when swallowing liquid or food, and have a general ache there.

While i didnt hear a pop, i think its uncanny how our situations are identical. I’m definitely going to look into this as i don’t fancy having my throat ache forever. I imagine if my scans are clear the food mustve just irritated the muscles or something but im def leaning towards this syndrome.

I hope you’re doing well!

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