Thought it was time to post my story…

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: :face_with_raised_eyebrow: 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

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@a_catindisguise -

You’ve sure been through a lot! First let me say, I am a fan of chiropractors, however, when it comes to ES they can do more harm than good. High velocity neck adjustments run the risk of fracturing elongated styloids or moving them into vascular tissues or nerves which are already irritated & thus making them more irritated. I have changed the type of chiropractor I see since my ES diagnosis/surgeries & now go to one who does more passive adjustments using an activator & a decompression table. These work just as well for me w/o the trauma of a more aggressive adjustment.

The first thought that comes to my mind is that Dr. Requena did a thorough look at your styloids & ligaments but nothing was said about your hyoid bone. Hyoid Bone Syndrome is caused by elongation of the greater horns of the hyoid bone. Sometimes they grow long enough to touch the spine. This extra calcification of the hyoid often causes clicking when swallowing along w/ the types of nerve pain caused by ES.

It certainly seems like you have something compressing nerves & possibly vascular tissues in your neck which in turn is creating the symptoms you have. Another thing of note is that it’s not always the styloid length that creates ES symptoms. Other physical features of the styloid like thickness, angle of growth, how curved, pointed or twisted the styloid is can also cause symptoms w/o the styloid being elongated. Many doctors don’t take this into consideration & won’t diagnose ES w/o the styloid(s) being elongated. Also, there are cases where just the stylohyoid ligaments have calcification on them. Most ES doctors don’t consider that calcified s-h ligaments can cause the same symptoms as elongated styloids so won’t diagnose it as ES when only the ligaments are calcified.

I’m glad you’re converting your CT images into 3D so we can have a look at them. That will help us to give you other opinions regarding what your scan shows.

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I’m still working on converting them! I feel like I have no energy after the last couple days to do that right now, but I am still not FULLY convinced that my symptoms are not coming from ES. It’s just complicated because there are other things it could be that I haven’t been ruled out for yet. I read an article today on Glossopharyngeal Neuralgia that mentions sometimes these patients complain of clicking, scratching or foreign body in the throat, so it’s a possibility. When I see the neurologist I will bring up the possibility of ES again. I don’t think Dr Requena is interested in seeing me back about ES again, so I’m going to try and trust him for now and do what he suggested. He wants me to follow up to let him know how the brain scan goes though, so that’s nice of him, I guess. And he believes I am experiencing the symptoms. Was the first one that didn’t mention it’s anxiety induced. I was also thinking about sending my scans when I convert them to a well known ES surgeon and get their opinion as well. Not fully giving up, it’s just been a rough couple of months trying to fight for a diagnoses and I’m tired! If the neuro can’t figure it out, I am back to finding an ES specialist for sure! It will always be in the back of my head until I know for sure it’s not that.

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I know how wearying feeling lousy can be, especially when you’re getting the run around & not solid answers as to what’s going on. Take your time w/ your images. We’ll be here & are happy to help you if we can.

Dr. Cognetti in Philadelphia, PA does telehealth consults & so does Dr. Samji in San Jose, CA. There is a charge for those, but both are good ES diagnosticians so would be options for getting a second opinion.

Interesting about the glossopharyngeal Neuralgia symptoms you read about. It seems to me that clicking wouldn’t come from nerve irritation alone but also from a mechanical dysfunction such as HBS or ES, but then I don’t have experience w/ GPN other than what I suffered/suffer from due to my ES journey & that doesn’t include clicking.

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I have seen great things about both of them! Also Dr Dewan for Hyoid Bone Syndrome. I definitely don’t think it hurts to seek a 2nd opinion. I never want to downplay any doctors skills but if you only have 1 patient with it :face_with_monocle: 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 :disappointed_relieved:

As far as the GPN- my mom actually had that theory before the doc said anything today. She thinks that maybe the virus I had before all of this started attacked my cranial nerves somehow and it’s causing my brain to send the wrong signals to my swallowing mechanisms and it’s maybe causing some kind of spasm? She compared it to when she had shingles in her leg years ago and it was causing her leg to do some crazy stuff. It’s all really confusing, we’ve all turned into scientists over here trying to think of anything it could be lol!

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You made me laugh! Indeed we become scientists & Sherlock Holmes level sleuths when trying to solve mysterious health puzzles!!

I’m sorry you’re struggling with so much pain at your age. You’re right…that stuff needs to wait till you’re old like me! You’re mom may be on to something with her theory. Definitely good thoughts.

I hope you can get this resolved so the wedding & house buying get back on your schedule.

Dr. Cognetti also does HBS surgery but not Dr. Samji so there’s another experienced doctor name for HBS.

:hugs: :heart:

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So frustrating for you, the symptoms do sound like ones which are common to ES or Hyoid bone syndrome, so I do second @Isaiah_40_31 's advice & am pleased that you’re still considering sending your scans to another doctor experienced with ES … (GPN can also be caused by ES) I hope that the medication helps you. Ben’s Friends do also have a facial pain group which might be helpful for you? Here’s a link:
Finding support for facial pain? Connect with people like you. - Living with Facial Pain
A rotten time for you to be dealing with this when you had big plans for this year, sending you a hug :hugs:

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@Jules @Isaiah_40_31 I really appreciate your sweet comments! It’s hard to find someone that understands how I’m feeling so I am beyond grateful I found you all! I’m thinking it’s worthwhile to explore the possibility of a neurological problem vs. a structural problem just to see if I can get relief with conservative intervention. I’ll make sure I see a neurologist that’s also a neurosurgeon and bring up ES again to see if I can get any further with it on that end. And I’m still planning on getting my scans in the hands of an ES/HBS specialist. I’ll let you all know how that goes and I promise I’m gonna post my 3D images on here when I can make myself sit down and figure it out lol.

internet hugs :people_hugging:

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@a_catindisguise Sorry to hear you’ve been through so much already! I really hope you get some answers and relief soon.

I wanted to mention that my ES symptoms didn’t get very noticeable until after I had covid in Jan 2022. When I saw Dr Hackman he actually asked me if I’d had covid because he’s been seeing an uptick in people whose ES has popped up or worsened after covid so it seems like the infection you had could’ve very well aggravated something, even if it’s not ES. I know that doesn’t really help give you an answer but I just thought you should know what a specialist in ES had to say regarding covid.

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I am so sorry for your pain and discomfort. I’ve been diagnosed with glossopharyngeal neuralgia and have many of the symptoms you describe. A contrasted head and neck MRI is needed to view the cranial nerves and even then it’s often diagnosed without seeing the true compression on imaging. Hope you get some answers and relief soon!

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Hello there! I could have written your story, almost word for word! I have had a clicking throat for 8 months now and EVERY time i go to a doctor about it, i am met with a blank face. Feel free to go read through my comments on here, but basically i think we are suffering the same condition. I have tried: medications for reflux, medications for anxiety, muscle relaxants, valium (that was a fun one), physiotherapy, neck stretches, and most recently injections into my neck. I was also hospitalised for self harm because of both the discomfort and the mental feeling of being ignored and gaslit for months. I know EXACTLY how you feel. It is awful. My second ENT finally agreed that it is NOT to do with my anxiety nor my muscles nor my loss of neck curve (that was ruled out ages ago but I’m still doing stretches just in case the xray didn’t show straightening of spine), but was actually a PHYSICAL condition. He is willing to do surgery, but I’ve been referred to a third ENT by the senior radiologist in my state, and second ENT is happy to liase with him. So i think between them there will be a solution. But basically i just wanted to say you are NOT alone. And yeah i totally understand your symptoms. It is a long road to diagnosis, but please don’t neglect your mental health either. Once the nasty things have been ruled out by CT scan it’s just a matter of finding someone to help you. I’d be happy to have a look at your CT scans in 3D to see if they are similar to mine. But in the meantime, I’m happy to try and support you along your diagnostic journey. Hang in there.

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I hope that you can get answers too @F_t , but pleased at last you’re being listened to :hugs:

@F_t - You mentioned you’ll be having surgery but not what will be done. Is it for a styloidectomy &/or vascular decompression, or what have the ENTs who are collaborating decided is causing your symptoms?

Not styloidectomy, they don’t think there is evidence of eagle syndrome. Resection of superior cornu of thyroid cartilage is what is proposed, however I’m still waiting to discuss with the third ENT about whether thyroid cartilage lamina resection would be more appropriate given the location of my symptoms. They didn’t think veins were involved, but actual structures of the laryngeal cartilage in my case. I’m wondering if @a_catindisguise symptoms are the same?

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Thanks for the info. It’s certainly worthwhile for @a_catindisguise to investigate that possibility.

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have you had your wisdom teeth removed or tonsillectomy? invisalign of braces? and if so do you wear a retainer?

We have had someone in the past suggest that the changes in jaw position that braces can cause could be a cause of styloid elongation. I totally agree!

I have no direct proof but I think mine started with the identification and removal of a grade 4 tongue tie at age 53. After the tongue tie release my hyoid bone shifted up, prior to that it was held down in tension from the tongue tie and related fascia. Then I needed to expand my palate to accommodate my tongue and all of my symptoms started.

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That’s an interesting thought @Chrickychricky & makes sense as the shift of the hyoid bone & palate expansion could contribute to skull base stress that might stimulate styloid elongation.

How long ago did you have that done?

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I had the tongue tie release surgery in 2018 and then it took about a year to expand my palate as much as could be done for a 53 year old (without resorting to surgery). I got about 6 mm of expansion. The tongue-tie itself causes a lot of tension in the face, neck and upper back in part because it causes a forward head posture.

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