Hey you all! Wanted to start off by saying I really appreciate this group so much! When I started having symptoms, Eagles was the only thing that matched to a T. I had a follow up with my 2nd ENT this afternoon to go over my CT with contrast and I’ve officially been ruled out of every possible ENT condition including ES. My story is kind of interesting though and I’m hoping maybe it can help someone else that thinks they may have this condition.
So my symptoms started the first week of March 2024 after having an upper respiratory virus. I also pinched a nerve in my neck/trap area around the same time and had to seek out chiropractic care. My first adjustment was at the tail end of the virus, I remember wearing a mask to my first appointment bc I didn’t test for COVID or the flu and didn’t want to get anyone in the office sick. Everything went great with the chiropractor and after my first adjustment I could tell he freed the nerve in my neck!! Yay, right? Well at least I thought….
About a week later I was laying on my back in bed and noticed my ears and jaw really hurt like they were being pressurized. I thought maybe this had something to do with an old diagnoses of TMJD so I started trying to stretch my neck out a lot by sticking my head in the air and smiling really big, trying to release or strengthen some muscles that may have been activated by my adjustment. A few days later, I noticed a clicking sensation in my throat when I would swallow my saliva and sometimes it would happen with liquids. Thought it was weird but also thought it would go away on its own….well to this day, it did not, and it was accompanied by the flare up of stabbing pain in my ears and pressure in my head, pain the back of my throat (like a knife was stuck down there), the foreign body sensation in my throat, pain when speaking and singing- which was really distressing for me as I manage a dental call center and I’ve been singing ever since I could talk. It felt like someone was squeezing my voice box as hard as they could. I also developed disordered eating- I was scared of eating anything that wasn’t soft and easy to chew.
I started to really freak out after about a week of all these symptoms flaring and thought maybe my chiropractor hurt me!! Poor man, it was not his fault and you will see later in my story he was blamed a few times for this by other doctors I’ve seen. I went back to him and asked him what he thought could be going on. He told me that when you’re adjusted, sometimes your body does weird things while it’s healing itself from the misalignments. I told him it was really stressing me out and causing a lot of anxiety and pain- that’s when he referred me to an ENT (pretty sure he was worried I had cancer or something scary)
I gave it a few days after that to heal on its own, but nothing improved so I made an appointment with my 1st ENT- Dr. Mariah Pate in St. Pete, FL. I had the normal sinus CT with a scope done. She pulled up my sinus CT and told me I had enlarged turbinates in my nose which could be causing my Eustachian tubes to dysfunction. I asked her “what about the clicking and pain in my throat?” And since I told her my symptoms started after the chiropractic adjustment, she could not comment on it and suggested I go back to him and ask him what could be going on. As you read earlier, I already asked him and he didn’t have much info for me. I left that appointment with a 6 day oral steroid treatment that was supposed to help with my ear pain. I was told it may inadvertently help with the throat clicking because it brings down inflammation. She also told me I should take Claritin. So I was basically treated for allergies but I knew in my heart it wasn’t allergies.
Filled the medications anyway and after the steroid treatment was over, I still had the same symptoms but it felt like they were getting worse. The click in my throat absolutely disgusted me and cringed me out. In this time I was waiting for a 2 week follow up with Dr. Pate. At my next chiropractic appointment, I told him what the ENT said and he was still at a loss. Told me he would definitely do some research for me over the weekend and see what he could find based on my symptoms. Told me it was safe to continue with my adjustments so I did and still see him 1x a week to this day. After this appointment with him, I scheduled to start getting myofascial release massages at his office as I still thought it could maybe be related to TMJD.
My chiropractor did look into it for me that weekend and when I saw him that following Monday, he mentioned clicking larynx syndrome and eagle syndrome. I had also started to deep dive into research over that weekend and the first thing google pulled up was clicking larynx/hyoid bone syndrome and Eagles. I started getting the massages that week as well, and noticed it would provide temporary relief, but a few hours later I would feel the click again and then the flare up of pain through my face and it would send me spiraling again.
In the time I was waiting for my 2 week follow up with Dr. Pate, I got in with my GP’s office but had to see a nurse practitioner that wasn’t familiar with me or my history- bad experience. He did a physical exam and again- nothing. Couldn’t feel the click cause he pushed too hard on my throat. I told him it all started after the chiropractor and he said “oh I don’t like chiropractors, they can cause more harm than good.” At this point I knew it was not related to my adjustments. I asked him if there was a way to refer me for a clear image of my head down to my collarbones and he just gave me a strange look and told me we could start with an ultrasound- it ended up coming back negative and wasn’t covered by insurance. I burst into tears at the office and when he saw me crying he said “don’t worry, you’re fine!” Dude no I am not!!! He also tried to treat me for allergies for a second time and I never picked up the scripts.
I finally had my follow up with Dr. Pate after 2 weeks for the steroid treatment and was able to tell her it really did not help. I started bringing my mom with me because I felt I was having trouble advocating for myself. At this time, I wasn’t having a flare up and thought my symptoms were improving (LOL NO). She did another physical exam and another scope- again, nothing. She told me if things don’t resolve on their own that she would like me to see a Laryngologist and a speech therapist and I left that appointment with those referrals.
The very next day, I had a really bad flare up again. Pain in my ears, jaw and throat with the strong intense “click.” I was so freaked out that I was about to check myself into a hospital and refuse to leave until they figured out what was wrong with me. Instead I called her office and asked if there was anything they could prescribe me to help with the pain. She sent in a muscle relaxer for me.
Started the muscle relaxer that night but noticed it did not help with the pain or the clicking, just made me feel really high and sleepy. I still take it to this day to help me cope, but it really does nothing for me anymore. At this point I am in full blown panic and felt like no doctor was taking me seriously. I made an appt with the Laryngologist/speech therapist but they can’t get me in until August of this year (4 months from when I scheduled) so my mom started doing research with me and found another office where all the ENT’s were specialized in the larynx. We made an appointment.
I still continued getting my adjustments and massages as I felt like it was helping me cope mentally. Even though they are not M.D.‘s they were trying their hardest to understand what was going on with me and showing me a lot of support and compassion. Their services were still only providing temporary relief. In the time I was waiting to see the new ENT, my mental health really started to spiral out of control. The “click” in my throat when swallowing was driving me to the point of insanity and violence against myself. It was also accompanied by the existing pain in my ears and throat, but I started to notice new pain in my eyes and my head. I started describing it as nerve pain because it would randomly shoot through my face and neck and then go back down to a moderate/tolerable level. When it gets bad, I want to rip my head off my body.
My family and partner felt totally helpless as they watched me further decline. At this point I had lost 20lbs without trying in a little less than 2 months, was having panic attacks sometimes 3x a day, and screaming and crying in pain (I have a very high pain tolerance). I started obsessively researching my symptoms and kept coming across Hyoid Bone Syndrome and Eagle Syndrome and I felt like ES matched my symptoms exactly. That’s how I ended up in this forum! I was fully convinced I had this condition.
Finally saw my 2nd ENT at the end of April. His name is Dr. Ricardo Requena in Largo, FL and I found out today that he has 1 patient with ES! So he knew how to confirm/rule it out. I told him my story up until that point and got a: 
look. But he finally ordered me a CT with contrast. I had it done last week and got the radiologist’s report back yesterday- no evidence of ossification of the s-h ligaments and styloids are not a concerning length. When I tell y’all I was PISSED when I read that because I felt like there was no other explanation. I went to the imaging center and had them put on a CD about an hour later. Studied them on the computer, comparing them to confirmed eagles CT’s on google for over an hour and decided I could not see it. I felt very defeated and kind of embarrassed that I pushed for so long trying to get this diagnoses. If it’s not that, then what the HECK is going on with me??
Had my follow up today with Dr Requena and he was very detailed and thorough looking at my CT. Explained what all the structures were and told me no evidence of Eagles at all. Then he went into what else it could be…he mentioned facial neuralgias and the different types and told me I need to see a neurologist and have an MRI of the brain and brain stem in order to rule those out as well as any compression on my cranial nerves from a blood vessel. Then after that we can start experimenting with nerve pain medication to treat “random unprovoked neuropathy.” So that’s where I’m at today. I’m nervous about the neuro path as I fear everything will fail and I’ll have to have MVD surgery. But I am trying to remain positive and hopeful that my condition can be treated with medication….wish me luck! And thank you for allowing me to be here even though I was ruled out for eagles. I hope to help people that think they may have this condition to consider other paths to a diagnoses after exhausting the ES diagnoses.
I will continue to update on my journey of finding what’s causing the pain and the “click”. Thanks for listening! I am open to any advice
idk man, and he said specifically “it’s clear that she has it” what about people where its not that clear? Ugh I’m so tired of doctors! I’m only 27, never did I think I’d be having to go to all these specialists to figure out what’s wrong with me at this age. I was trying to buy a house this year and get married- instead I got pain and misery and health anxiety 
