Not Diagnosed / Looking for symptom confirmation

Isaiah,

That’s wild! I just wish I would have gone to my ENT first. I went through so much with that first Gastro doctor. He even dilated my throat which made it so much worse. Then he told me I had Barrett’s Esophagus which turned out to be incorrect but it scared me for months. Then I paid $350 a month for a proton pump inhibitor that didn’t work called Dexilant. This went on for over a year. If I would have just gone to the ENT first, I could have avoided all that cost and those outpatient surgeries the gastroenterologist did and the stress. Also, when he couldn’t figure out what was wrong, he told me it was anxiety and I needed a therapist. I wish the gastroenterologists knew about ES and would consider it once they ruled everything else out. It would save patients so much hassle and expense. I wrote a personal letter to that gastroenterologist after my Eagle surgery and told him what I had and that the Eagle surgery resolved it hoping he would learn something from it. :wink::wink:. I hope that helps other ES patients in the future.

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Good for you! I tell every doctor & nurse I’m in contact w/ about ES & show them pics of my styloids (on my phone) so they have a good visual to go along w/ the verbal explanation. Some have heard of it, but none are really familiar w/ it. After being on this forum for so many years, it seems like a pretty common syndrome, so I have to keep reminding myself we are special, unique, & have a rare syndrome, or is it?! :face_with_raised_eyebrow:

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Exactly…is it really rare? :thinking:

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Elongated styloids and calcifications aren’t rare per se. Especially because the human’s body tends to ‘calcify’ as we age, e.g. thyroid cartilage becomes calcified, hyoid bone “fuses” from three segments into a single bone and xiphoid process (the bottom part of sternum) also becomes calcified by approx the age of 35-50.
But in so many cases all these changes are (almost) symptom-free mostly because they happen slowly and the body has plenty of time to adapt itself.
What’s noticeable, very often ES comes suddenly, after some provocative event shifting the structures around. Examples I remember from med.articles and other people’s stories: painting the ceiling; pulled muscle while exercising; car accident; sitting in the dentist’s chair with the neck extended; dancing and shaking the head wildly; getting chiropractic adjustments on the neck; suddenly rotating the neck while driving the car; lifting/carrying heavy loads and so on.

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VDM,
Very interesting…. I’ve never heard that before but it makes sense. Mine came on suddenly and never went away until after surgery. I thought I had Covid at first due to the sore throat but I was negative. The thing about ES is that it had such weird symptoms. I’ve had two bone spurs removed. One tore my rotator cuff which had to be repaired and the other was in my ethmoid sinus and was removed. But I have never experienced symptoms like ES. It’s really something.

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Indeed it is … I’d blame it on the anatomical structures around the temporal styloid processes. There are just so many nerves, blood vessels around them, and they happen to be just about the most flexible pair of joints in the whole spine - atlanto-occipital and atlanto-axial…
Lots can go wrong there :confused:

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I have vascular ES due to compression by the styloids and c1. I’m in between surgeries (hopefully gonna have Dr hackman do my next one) but both my styloids calcified and elongated. It all started after a night of painting my walls and I refused to believe something like that can so quickly turn my life upside down. But the more I read, the more likely that seems to be the cause.

Do we know how quickly the styloids can calcify? I tried reading up on it but can’t really find anything. If painting is the cause for me and some others, is the suggestion that the styloids calcified overnight or something like that?

Beach lady- I’m so intrigued by the path you had to take to get diagnosed. I too was diagnosed with reflux and none of the meds worked. They told me that they didn’t need to do a 24hr ph test because the barium swallow proved reflux to my throat (although after the fact, two GI’s told me otherwise). Since meds didn’t work, my ENT encouraged me to consider Nissin fundoplication surgery. I had the surgery, they proved I was no longer refluxing, my my pre op symptoms were still VERY present! My gastro surgeon and ENT all but called me crazy and like you, claimed it was anxiety. My pain was NOT due to anxiety…any anxiety I had was due to pain. I even saw a gastro and ENT within Mayo health system and much the same response.

Im anxiously awaiting my styloidectomy and hoping for positive results because like you, I want to go back and educate all the specialists who failed me.

I’m just floored at how incredibly similar our experiences are!

Best always to you!

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Curious to know if being a chronic neck cracker my whole life could have any impact? I’d assume so from the items you listed above. Just weird how all of my symptoms started so suddenly once I became pregnant!

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I am all too familiar with the anxiety card! I have had to explain so many times that my anxiety is triggered because of my WEIRD, UNEXPLAINABLE symptoms rather than just general anxiety creating my symptoms :roll_eyes:

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Elongated styloids might be lurking around for a while, but the trigger event might shift the neck/spasm some muscles/stretch some ligaments and the subtle changes might be enough to start the cycle…
Unfortunately, I have no idea how quickly the neck ligaments involved in ES may calcify too, but some sources mention that calcific tendonitis in shoulder tendons take about 3 months to form. Could be something like this. I’d say it’s unlikely overnight, but who knows.

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@vdm posted a research paper which was by Japanese doctors & there was a mention of how quickly the styloids elongated for a patient, here it is:
Chronological Progression of an Enlarged Styloid Process - Daisuke Maki et al - General / Research Papers - Living with Eagle

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Elijah,

I believe that when you painted it moved it due to the angle of your neck which is not normal for you. I could be wrong of course because I’m not a doctor but I would think the calcification takes a long time to happen. The angle of your neck while painting could have caused it to start irritating a nerve or poking into a nerve causing immediate symptoms. I did lots of work around my house during Covid. That’s when I started experiencing pain symptoms from the Eagle Syndrome.

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Tjmhawk01,

I too considered Nissin surgery. Luckily I went to the second GI doctor at Cleveland Clinic who did the 24 hour PH test and told me that he did not think I had reflux and told me to see an ENT. I think it’s sad that some doctors refuse to think outside the box. Good luck with your surgery and I hope you get some relief soon.

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Greenway 22,

That’s exactly how I felt. The ES and the pain and weird symptoms from the ES were causing issues not the other way around.

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For many people with rare conditions this is VERY common.
Personally, I’ve been given what I call the ‘All fixed’ speech a few times, but things were not ‘fixed’ at all. Part of the theory behind it was ‘We operated, so therefore there is no issue’. The easiest thing to point to as a cause for continuing issues is to label it all as a psychological because then the issue isn’t theirs to own, they put it all back on us, the patients. Yes, I was anxious, because I was in nauseating agony but trying to get that message across to the medicos, near on impossible. It wasn’t until everything had healed and that they could take a scan and then see ‘Ohh yea, there is a problem there…’ I’d been telling them, but no one was listening.

Please know, you are not the only one who has had to travel this route with Dr’s. I can assure you.

Merl from the Modsupport Team

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Thanks for the encouragement, Merl. Yours is an all too common scenario among those with rare diseases & syndromes!

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Wow, your symptoms are nearly identical to what mine were before my surgery, except mine were all on the right. The headaches you describe are exactly how I’d describe mine, and unfortunately can be a symptom of intracranial hypertension. I think the increase in symptoms can be related to aging, pregnancy, Covid or all of the above. Mine started intermittently in my early 20s and by 30 years old they were unmanageable and constant. Couldn’t tell you what caused it to get so much worse, but it did. I don’t say any of this to scare you. There is hope of feeling better especially if you find a doctor familiar with this condition, which is easier said than done, but it is doable. I had surgery in October to remove my styloid and decompress my jugular vein, and thankfully I feel a lot better now. Please message me if you’d like to talk more, your symptoms are SO familiar to me. Congratulations on your pregnancy, I hope after you have your baby you can find answers and healing! Good luck.

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Merl, thank you for adding this comment. I hope folks find your words early and consider them when self-advocating. Nothing said could hold more true!

With no rhyme nor reason for symptoms experienced, you genuinely believe that since the comments are coming from an educated and experienced doctor, that they must be right. And in my case, I went home thinking, “How did I suddenly develop a mental health issue where one didn’t exist prior?”

As I read Beachladys comments and experiences to my husband last night, he just rolled his eyes in disgust because he sat in with my final post-op appt with my GI surgeon and listened to him tell me that “it must be anxiety and if you get it under control, your pain will go”.

Now that I have a reasonable diagnosis with supporting evidence and a lot of knowledge gained, my thought process is so much clearer and any anxiety I did have is next to nothing.

I admit that it doesn’t take much thought to fuel the fire within where specialists fail their patients and use mental health as a crutch when they have nothing else. And some amazing post-ES diagnosis specialists who’ve heard my story feel very much the same way. Hindsight, there was so much evidence in my own scenario (even common sense) that should’ve been considered beforehand that contributed to a failed diagnosis and if I can see that evidence, surely so should an educated and experienced specialist….especially if this falls within their wheelhouse.

Much peace to you! :blush:

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I had covid horribly back in August and it lasted for almost a month! I’m clearly aging although I’m only 27 and everything escalated as soon as I got pregnant.

I’m currently able to get through my days but not without constantly rubbing my jaw, anxiety about eating some days and wanting to just be home in bed by the time 5pm rolls around. I find relief in heating pads/ice packs but that really only does so much for me. The internal burning mouth, weird tongue symptoms, trouble swallowing and feeling like something is stuck in my tonsil area drive me insane and I try to ignore them as much as possible. I truly can feel a bone sticking out in my jaw and through my tonsillar fossa so I’m hoping that I’ve hit the ES diagnosis on the head. Only time will tell!

I’m glad to hear surgery helped you & hope to get a quicker diagnosis than most once I have my daughter. I’m so thankful to have found this forum and so many others who experienced these weird group of symptoms and can relate.

How long did it take to get your diagnosis and what was the biggest break through in being able to get the correct ES diagnosis?

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