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.