Not Diagnosed / Looking for symptom confirmation

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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I was very lucky in that I stumbled into one of the best Eagle syndrome surgeon’s offices not knowing what was wrong with me, but I went to him because my fiancé already had seen him for other issues. I was having throat problems - pain and a weird stuck in throat feeling. He connected it to the headaches I was having, dizziness and other things. But it took over a year, various testing and trying different treatments to rule things out. I was started on a blood thinner eventually and my symptoms went away within hours… that was a huge confirmation for me. The jugular or other veins/arteries being compressed can actually cause a lot of pain which I obviously didn’t even realize before my diagnosis. I think it’s different for people who go in with an idea or existing imaging but thankfully I found a brilliant doctor who never gave up on me, figured it out and fixed me.

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Some people are diagnosed in much less time than a year. the doctor @blossom saw is very thorough in his investigating & leaves no stone unturned which is a good thing especially w/ vascular ES.

The ENT I first saw (before I found this forum) happened to know about ES & tentatively diagnosed me immediately upon hearing my symptoms & feeling my styloid under my jaw. He sent me off for a CT scan. We reviewed the scan together in a week, & I was diagnosed. I booked surgery w/ him then found this forum & the list of other doctors who knew about ES & decided a second opinion would be a good idea. I was so thankful for that second opinion because the ENT I saw for round 2 was much more experienced w/ ES surgery & had a much better surgical approach than my diagnosing doctor. I cancelled my surgery w/ ENT #1 & scheduled w/ ENT #2. I had my first ES surgery w/in 2 mos of being diagnosed w/ ES.

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I’m almost positive I can feel the same bone under my jaw but I second guess what I feel sometimes as I’m clearly not a doctor! If you had to describe the exact location of it what would you say it was?

I only discovered it because I am constantly trying to find relief in my jaw area and also the underside of my chin but more back towards my ear. I thought it was extremely strange I could feel anything pointing out in that area!

Mine was in the soft tissue inside the bend in my jawbone. Mine felt like a hard lump (L side), & I thought it was a salivary gland or lymph node w/ a problem. When I poked it, it caused pain down the front of my neck (don’t worry if this isn’t the case for you…). After I was diagnosed, I could feel that it was “ribbed”, & sure enough, in my 3D CT images I could see that my styloids had a “ribbed” look to them. I never felt a point. I could also feel my right one if I pressed firmly on the soft tissue behind my right ear lobe. So interesting!

That is exactly where I feel mine on the left side! I can’t wait to have a scan and find out if this is all correct speculating for myself.

I can’t remember the post I saw from this forum but there was a woman who logged all of her symptoms and doctor visits prior to her diagnosis and she mentioned swelling in her submandibular region and I’ve also been experiencing that. I wish I could find the post again but it was a very detailed log of her visit dates, type of doctor she saw, symptoms she was experiencing etc. It was a great reference to look at!

Hey Tjmhawk01,
You speak of that thing known as ‘Common sense’. The problem is that common sense isn’t actually that common at all. What one person may see as common sense, another may have no clue of. I have also found that often medical arrogance out trumps common sense at every turn, that attitude of ‘Well, I’m the dr, so I know. You? you’re just the patient, you wouldn’t know…’ and this (again) only serves to make us question ourselves BUT you know ‘you’ better than anybody and if something is amiss or not right, you have to speak up.

Back in '13 I needed (another, No.4) neurosurgery, so they operated and a week later I was sent home. Things weren’t great but I figured it’d take a while to settle/recuperate, so I waited. I saw my pcp and he just minimised it all as recovery symptoms, but I knew something was wrong. I was to have a neuro review 4weeks post surgery and my pcp recommended I wait until then. So I did.

When I saw the neuro he was furious, there was an issue, a serious issue and I should have been referred directly back to him as a priority. But to see him I needed a referral from my pcp. He told me directly ‘Get a new pcp’, which I’ve since done. It turned out that I did need further neurosurgery to correct the problem and the outcome… …let’s just say the outcome has been less than positive. Now I question myself again “Could the outcome have been better if I’d yelled and screamed a bit more???” It’s a question I’ll never get an answer for, but here we are 9yrs on and at times I do still wonder, what if?

You owe it to yourself, speak up.
Merl from the Modsupport Team

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