Over 2 years of chronic pain - could this be Eagle?

General
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Hi everyone!

My name is Michael, I’m 21 years old, I live in Munich, Germany, and I’ve been having chronic pain for over 2 years now. Two days ago I stumbled upon Eagle Syndrome on Google Scholar (I typed in my symptoms in English and the American literature about Eagle Syndrome matched almost all of them) and came across this forum, which has been extremely helpful already. I’ll give you a brief overview of how it all started and which symptoms I have, and finally the steps I’ve already taken to diagnose Eagle Syndrome (which have been unsuccessful thus far). I’d be glad if someone could read all of it, I’ll try to keep it as concise as possible.

It started in October 2015. I’ve lived in Dublin for three months and started having a cold/flu which didn’t seem to go away. I had the sensation of something stuck in my throat on the right side which gave me a constant cough. Over the next months, my symptoms increased: Speaking became difficult, my right arm/shoulder started tingling and hurting, my jaw tingled, neck pain, plus the globus syndrome worsened. All in all, the first symptoms comply with Ian Deleon’s (https://www.youtube.com/watch?v=ttdrFGBYQj0&t=261s). After 6 months-ish, my cough faded away, as if my throat accepted that coughing doesn’t relieve me of my globus sensation.
I got diagnosed with a herniated disc C6/7 in July 2016 and had disc surgery in January 2017 (prosthesis) because the doctors attributed my pain to that. Surgery went well and I did ambulant rehab, but my globus sensation just kept on getting worse and became painful. Now, I’ve got all the typical Eagle symptoms (except for ear pain, I only have a constant tinnitus, and swallowing is normal - it feels like my left side is doing all the work when swallowing, whereas my right side just feels numb): rotating my neck makes things worse, same with jogging and exercising in general. Everytime I move my jaw (especially when talking), it increases my jaw pain and headache. My chest is extremely tight, I can’t breathe properly, and my right stomach cramps (vagus nerve?). My neck and sternocleidomastoid are ridiculously stiff, even nodding is hard. Finally, I have a constant pain on the base of my right skull. I’m 10 months post-OP now and tried everything to improve my condition (physio therapy, accupuncture, TENS, regular strength and mobilisation exercises for my neck, bite splint) without success.

I’m scheduled for a pain clinic this Friday - until I found out about Eagle. I read a lot in this forum and everything made perfect sense. I even feel a bone in my throat on the right side (at the exact same spot this guy had surgery: https://www.youtube.com/watch?v=czO8PFCdkWk&t=160s). I asked an orthopedist for a CT, which I had yesterday (without contrast, they said it’s unnecessary), but the radiologist denied Eagle Syndrome. He looked at the pictures (in 2D), measured the styloids and told me they are 2.5cm-ish long. He didn’t mention the ligaments. Now I’m pretty confused:

  1. Can you properly measure the styloid in 2D? It doesn’t make sense to me.
  2. Could I have normal styloid length, but calcified ligaments are my real problem? And you could you see this in a normal CT?
  3. Can you exclude via a normal CT that the styloid has a bad angle and therefore causes persistent pain?

(I asked them to give me a 3D recreation of the CT, which they did, but the pictures have pretty low resolution.)
I don’t know which steps to take now, really. If someone can recommend an Eagle specialist in Germany, I’d be extremely thankful. I want to fully dig into this since it matches my symptoms perfectly. The link to my pictures is underneath this post.

Cheers,
Michael

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I uploaded my pictures on an Instagram account (seemed the easiest option). I don’t have them in bettter resolution, unfortunately: https://www.instagram.com/michael.sai__/
I got more pictures in 2D, but can’t tell anything from them. If you can draw any conclusion from the pictures, I’d be over the moon.

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Hi Michael,
FYI, Eagle Syndrome is defined as calcification of the stylohyoid ligament(s) OR elongation of the styloid process(es) OR a combination of the two. Looking at your CTs (I’m not a doctor & can’t diagnose you), you could have calcification of your ligaments on both sides. Look at the tip of each styloid & you can see a tiny dotted line descending toward the posterior angle of your jaw bone. That could be calcification on your s-h ligaments. My ligaments were partially calcified & looked like dotted lines similar to what I see in your CT images. The styloids don’t look especially long but perhaps do look pretty thick. Since thickness as well as angle can play a role there might be something to that.
Unfortunately, doctors who deal w/ ES often don’t “think outside the box” when it comes to symptoms & the actual definition of ES i.e. they stick to what the “books/studies” say so it can be quite an ordeal trying to find someone who believes what you’re saying is credible. There was a member on this forum awhile ago who was from Germany & had successful ES surgery there. I’ll have to take time to dig back through old posts to recall his screen name. In the meantime, keep advocating for yourself. If worse comes to worse & you can get back to England, there are a couple of experienced ES doctors there.
I will pray that you are able to find help in Germany though.

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IThank you for your reply, Isaiah.
Were your styloids elongated, or did you “only” have calcified ligaments? And if my ligaments were calcified, could that explain the dot I can feel on the right side of my throat?
Anyways, I’ll try to get in contact with two doctors in Bochum and Regensburg who did surgeries before according to case studies, hopefully they’ll reply.


I’m just leaving those links here in case any other Germans read this.

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I believe the poster Isaiah is referring to went by the screenname of Benyon.

Here’s a thread by another German poster who had recently had surgery in Bonn, he put up a photo with the name and director of the clinic where he was treated:

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Thanks! The support in this forum is fantastic. I feel like every minute I’m getting closer to fully understanding my health condition - whether it turns out to be Eagle or not.

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I added a few more pictures on my Instagram site (https://www.instagram.com/michael.sai__/). Weird method, I know, but I don’t know where else I could cumulate a bunch of pictures as easily.

You can see my skull from behind. Call me insane, but I can clearly see little dots on my right side, but on the left side not at all. Would you agree this confirms the suspicion of a calcified stylohyoid ligament? Are those dots the ligament? And once again, apologies for the terrible resolution. No idea why my radiologists couldn’t create better pictures.

Thanks in advance, any help is greatly appreciated.

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Hi Michael!
I had bilateral elongated styloids & partially calcified s-h ligaments. My surgeon removed both. He errs on the side of caution & tries to remove the styloid to the skull base so there’s no chance of regrowth. This can only be done by the external approach. He also removes the ligaments so no further calcification can occur. They play a minor role in swallowing & are really not missed once removed.

I see the dots you’re talking about & again, not a doctor here so can’t diagnose, but the dots do look suspiciously like they follow the line of the ligament on that side. Some ligaments calcify totally so they look like an extension of the styloid process others partially calcify i.e. calcify in small segments (as the dots would indicate; a solid calcified ligament would appear as a line). Any calcification on the ligament does cause it to be restrained & at least somewhat immobilized which, of course, could cause all sorts of trouble thus a calcified ligament gets the ES label.

Smart idea to contact the doctors who wrote the research paper. Hopefully they will take your symptoms more seriously & investigate your situation in greater depth.

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Yes! I was thinking of Benyon. Also thanks for remembering the more recent member! I appreciate your good memory, callove!!

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Thanks callove- I thought we’d had someone else from Germany; will add those to the list. It’s a really good idea if you can get in touch with doctors who’ve written research papers, we have suggested people try that before, Michael.
Can’t see much from the images, I’m afraid. But it’s interresting that you’ve had surgery on your C spine as well- I was diagnosed with ES but symptoms were bearable, but I then had a disc problem C5-C6 (which thankfully resolved with physio so I didn’t need surgery), and the two together worsened my symptoms- I started getting some scary vascular symptoms, so decided to have the surgery.
What I would say is that it’s not always the length of the SPs which is important- the angle & width can make a difference too- there’s links to research papers in the ES INfo section about that. It could be that having the neck problem was enough to shift the SPs into contect with nerves etc, causing inflammation?
(I only had elongated SPs not any ligament calcification)

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Thanks Jules, that makes sense.

I’ve got an appointment on 5 January next year with Martin Kunkel in Bochum. He diagnosed and operated on the styloid process in the past and even appeared in a German documentary about Eagle Syndrome (https://www.zdf.de/verbraucher/volle-kanne/praxis-taeglich-das-eagle-syndrom-102.html).
In the meantime, I’ll try to learn as much about Eagle as possible. Another interesting thing I’ve read is that the styloid process can break and cause problems. Maybe that’s the pokey thing I can feel in my throat? I had a few sport accidents in the past, about 3-4 years ago. Maybe my chronic cough in Dublin was the final straw that fractured my styloid structures permanently? The styloid process doesn’t look persistent on my CT (https://www.instagram.com/p/Bcn0LWen0Pf/?taken-by=michael.sai__). Is this normal or a possible hint? Plus I don’t have ear pain, which most on this forum seem to have. I only have a constant tinnitus. Maybe a broken styloid causes a lot of Eagle symptoms, except for ear pain? Bold hypotheses, I know. It sounds far-fetched, but I can’t see any flaws in my theory.

Anyway, I’m 99% sure that pursuing the suspicion of Eagle syndrome will eventually lead me to the root of my problem.

Cheers, Michael

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I just found these articles:


So, obviously my styloids are broken! Jesus, if I hadn’t been adamant after the negative CT yesterday, this would have gone completely unnoticed. My 3D-CTs look exactly like those pictures. The styloids aren’t too long, but fractured.
It’d be great if anyone could support my suspicion or refute it.

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Hi Michael, as Isaiah said, the stylohyoid ligament can calcify in sections. The un-calcified sections won’t show up on CT, but the calcified ones can. This can give the appearance of a fractured styloid process, even if the styloid itself is actually intact.

What you could be seeing on your CT is: the styloid, followed by a band of uncalcified ligament that is radiotransparent, followed by a chunk of calcified ligament which is radioopaque. (Disclaimer: I’m not a doctor, so take my interpretation with a grain of salt).

In the CT from the article you posted, the styloid appears to be fractured right at the point where it emerges from the base of the skull. That doesn’t seem to be the case with your CT.

Unless you’ve had some kind of direct head or neck trauma, it’s unlikely the styloid is actually broken. The styloid is protected behind layers of muscle.

If you do have a calcified ligament, it could be causing your ES symptoms even if the styloid is “normal” length.

Since the doctor in Bochum has experience with ES, he should be able to interpret your CT scan. If you’re not satisfied with his answers, you can ask him to order a fresh scan.

Regarding your throat symptoms, ES can cause pressure on the glossopharyngeal nerve. The brain interprets the nerve signals from this pressure as the feeling of something in the throat, but it doesn’t necessarily mean there’s anything there. (Although some people have long, curved styloids which actually physically push into their throat).

The symptoms of ES are myriad, and as Isaiah says, no two patients present in quite the same way. So I’d not let the fact that you don’t have all of the “typical” ES symptoms stop you from pursuing this diagnosis.

Each ES patient seems to have unique symptoms that others don’t have. And many patients have symptoms that the doctors swear could never be related to ES, but which disappear after they undergo surgery.

Ultimately, ES is defined to be that constellation of symptoms which is relieved by surgical removal of the styloid process/stylohyoid ligament. So there is no way to determine whether a particular symptom is due to ES other than to undergo the surgery and see whether you get better.

After reading the experiences of those who post here (and going through my own experiences!), I’ve concluded the description of Eagle syndrome found in the medical literature is highly inadequate. Many papers just regurgitate the same definition that Eagle himself laid out in his original paper from 1937.

There are so many symptoms that the literature simply doesn’t mention. Doctors are very conservative and reluctant to go beyond what’s explicitly discussed in the existing literature. This can make getting a diagnosis very difficult if you have an atypical set of symptoms. (In your case, I think you have many of the “classic” symptoms of ES).

This disease demands a degree of self-belief from the patient. Doctors are often skeptical that you could have something so “rare,” and because ES is a diagnosis of exclusion, they often want to spend a lot of time ruling out other causes. Believe what your body tells you, and trust your intuition.

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Thanks for your elaborate reply!

I have an appointment at an oral surgeon tomorrow. I just found out on his website that he has digital volume tomography in his surgery. Fingers crossed he’ll take my suspicion seriously and grant me a scan. I’m feeling fairly confident, though.

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Michael,

It does look to me like your styloid could be broken, but as callove said, it could be an uncalcified gap in a partially calcified s-h ligament. That call needs to be made by a doctor who can read the CT scan with a trained eye. SPs, when long, can break somewhat easily. I recall a couple of people who posted on here a couple of years ago had styloids break - one from coughing & one from laughing. Another member went to a doctor close to his/her home for diagnosis. He diagnosed ES then intentionally broke the styloid & told the ES patient that he/she would be fine & would no longer experience ES symptoms. We, in the know, were aghast that a doctor would be so bold & presumptuous as to assume breaking the elongated styloid by external means & then leaving the little pieces in place would cure the symptoms. I don’t think we’ve heard anything in follow-up from that person. This event occurred in New York.

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Hello Michael,
Your simptoms , the side and your name perfectly match mine :slight_smile: .
Please reade my story here : Persistent ear pain , jaw pain , throat pain , neck pain ,sholder pain over 1,3 years
I see your pictuers and I don’t think you have eagle

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It’s definitely worth getting them reviewed by an expert- we’re not on here, so can’t diagnose one way or another, hopefully you’ll get some answers soon. Best wishes, & let us know how you get on!

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Hey, I’ve got great news. I went to the oral surgeon today who didn’t take me seriously at all. I told him about my suspicions, but he rejected them by saying “You should stop googling so much” and didn’t want to hear about broken styloids. He basically said the gap is due to a bad 3D-recreation of my skull. Obviously, he has never really learnt about Eagle Syndrome because he said that it can only occur if the bone is too long. A typical textbook answer, which, as everyone in this forum knows, is medically incorrect, or, to put it more bluntly, utter rubbish.

Anyways, I was madly frustrated as I was 100% sure this is the cause of my issues. I went to the casualty department of Klinikium Rechts-der-Isar in Munich and somehow convinced them why I think my styloids are broken. The doctors talked to me on the same level (finally!), confirmed my suspicions and told me my styloids look broken, yet my symptoms indicate Ernest rather than Eagle syndrome.

I suffered neck trauma four years ago, I was 16 years old by that time. It were two mid-level accidents within one or two weeks: I landed awkwardly on my back after trying to hit a ball that went over my head whilst playing volleyball, plus a stupid, overambitious long jump in school where I landed with my backside first instead of my legs. (That jump was my personal record, but in hindsight I’d have rather stayed healthy.) The incredible thing is: Both accidents were painful for about 20 minutes, but then I felt fully recovered. I even participated in a 100-metre-race thirty minutes later. It was only two years later, after I had a cough for two weeks, that my symptoms began to occur. Anyways, I’m going to read as much literature as I possibly can about Ernest Syndrome in the next days.

To conclude, they haven’t analysed the 3D-CT pictures yet, but they will at their weekly gathering next Monday. One of the doctors, who was the first to examine me and listened carefully to my ramblings, promised to call me right after the meeting. If it looks like Ernest or Eagle (which I’m 100% sure now), I’ll get a local injection next Tuesday. A two-year-long odyssey might have ended now. I just pray that my research on Ernest will prove it to be a fully curable disease.

I’m eternally grateful for your support on this forum. It is terrific that you guys keep on helping people, even if you have already gotten rid of your symptoms. I’ll promise to do the same, even if I’m fit again.

Cheers,
Michael

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The symptoms for Ernest Syndrome are similar to ES- I think there have been a couple of members before who have been diagnosed with this rather than ES, but not had follow-ups. (There is a brief section in the Newbies Guide- If not ES then what else?- with some other conditions which have similar symptoms so members can google it themselves).
I can see doctors point of view- they must get fed up with patients coming in convinced that they have weird & wondeful conditions they’ve found out about online, but equally doctors can’t be experts on everything & sometimes we can have a good idea about what is wrong with us, & more time to investigate it ourselves… it would be good if they could just be a little more open to ideas!
There have been members who’ve been helped (& it is also used as a diagnostic tool by some doctors for ES) by a local anaesthetic injection into the area where the styloids are, so I don’t know whether your doctors might do this or the same procedure for Ernest Syndrome, either way we hope that you get some answers & some pain relief.
Thank you for all the extra research you’ve done & shared, and let us know how you get on!!

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Thanks Jules, I totally agree. It’s hard to convince doctors that you actually did thorough research on scientific websites and that the condition you’re suffering from is so rare that you were forced to diagnose yourself. I understand that you somewhat offend the doctor’s honour by trying to self-diagnose and that way too many people doing that are off base with their own diagnosis. However, I did my best to tell them how long I’m in pain, that all other diagnoses have been wrong and that I know how to conduct proper research as this is basically my job in my course of studies (Communication and History). The arrogance and condescendence I received after my pleading is simply inexcusable, especially as I had proof on my CT disc. Telling people with chronic pain that they should “stop googling so much”, despite the fact that their suspicion is supported by CT pictures, plus the ridiculous statement that the gap in my styloid process “could simply be a CT error” and my pain “could be so much else”, without giving me an answer as to what else my pain could be, is appaling. That’s simply a matter of common sense. You don’t have to have a doctor’s degree (or an eagle eye, for that matter) to recognise that something isn’t right with my CT. I honestly thought I’m stuck in a Catch-22 situation: If I tell doctors it might be Eagles, they won’t take me seriously. If I don’t, they won’t consider it at all. If it wasn’t for the awesome docs in the clinic here in Munich, this ordeal might have never ended.

I can’t stand people who conceal their incompetence with arrogance and self-righteousness. If doctors don’t know about rare conditions, they should be honest about it. They are commited to their patients’ well-being, not their pathetic sense of honour. The amount of times I got laughed at by doctors in the last two years is unreal. Most of the doctors implied I have a mental disorder. One even said that I’m considerably dumb for a person who finished his A-levels.

At the end of the day, I’ve got two broken bones in my jaw, clearly visible in CT pictures, even if the resolution is 200x200. My entire history matches perfectly with the experiences people had to make on this forum. I find it inexplicable that none of the doctors realised this in over two years, despite radiographic evidence.