Do you have it,or know anyone that does?
I have just been diagnosed with it,and while it’s not a terrible thing,it sure clears up a bunch of questions about my aches and pains.
The doctor told me surgery is the only treatment.
Just looking to talk about it if anyone has input.
Hi,
Just read your post on Eagle’s syndrome. I’ve been suffering from a variety of pains, recently had surgery for it, and posted a good deal of info about Eagle’s here:
I hope this may help you.
Best of luck!
Eagle syndrome…makes you…soar?
Sorry had to be done. Good luck with the surgery!
Thank you for the link,very informative.
What were your symptoms, and what was the diagnosis process like?
I suppose it’s a testament to the rarity of Eagle syndrome that this thread only garnered four responses before going dormant for 15 years. I’m resurrecting it today to add my own story.
For them what ain’t read up on Eagle syndrome, it’s a bugger of a condition for several reasons:
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It’s rare. About four percent of people develop elongated styloid process bones and calcified stylohyoid ligaments – and only about four percent of that small group of folks actually develop symptoms. In other words, only 1 in 625 people might ever develop Eagle syndrome. That’s half as common as multiple sclerosis.
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Symptoms vary wildly. There’s a lot going on at the sides of your neck: jugular vein, carotid artery, carotid sinus, and a number of nerves running from your brain vault out to your face, neck, and points further south. Your styloid processes and stylohyoid ligaments run right through the middle of all this stuff. Depending on which nerves are getting harassed by those bits and pieces, you may experience numbness or pain in any of a number of areas. In vascular-variant Eagle syndrome, the styloid process and stylohyoid ligament can impinge on the internal branch of the carotid artery, potentially damaging it (carotid artery dissection) or compressing it to the point of inducing cerebral ischemia.
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Symptoms can be intermittent. They may only manifest with particular postures or head/neck movements.
Put it all together, and it can be difficult to find a doctor with enough experience to have ever heard of Eagle syndrome and enough experience to recognize that it might be a fit for the particular symptoms you’re reporting. And even after you get a diagnosis, the rarity means it can be challenging to find someone who actually has the skills/experience to treat it.
Me? I got unlucky, then lucky. I was one of the unlucky few who developed Eagle syndrome, and then I was lucky enough to progress from crisis to cure in a little over a month.
First, the unlucky part:
For the past several years I had been experiencing occasional popping/plucking sensations on the right side of my head/neck. Maybe once every day or two. Nothing major, sort of like the popping sensations you sometimes get when you move your joints, except they weren’t near any joint that was in motion. Over time, they increased in frequency and amplitude, eventually hitting maybe a few times a day. Still just a minor annoyance. I thought maybe they were bubbles of air escaping from my parotid gland (I started using a CPAP about six years ago).
Then about a year ago, some of these popping sensations were followed by a wave of really terrible nausea. It would start maybe two seconds after the pop, ramp up to “oh god I’m gonna throw up” over the next couple of seconds, and then fade away over the next twenty seconds or so, before my stomach could ever actually go into full reverse peristalsis. These were pretty rare, maybe once a month.
And then about six months ago, I had the pop and nausea, but then I also had severe lightheadedness along with the nausea. It felt like orthostatic hypotension, except I had been sitting down the whole time; it was so bad my vision started to gray out, and I had altered perception and barely managed to keep from falling out of my chair. This one got my attention, so I saw a doc and got an MRI scheduled for six months out. The doc didn’t have any particular suspicion in mind, so the MRI was just a “let’s see what we can see” kind of thing.
Over the next few months, I had maybe a couple more pop+nausea events, but none with the lightheadedness. That is, until about four months ago. I was sitting at the table eating lunch, and one of these popping events happened. A big one. The severe nausea hit, and with a mouth and stomach full of food, I was sure I was going to actually throw up this time. I got up and headed to the bathroom, but fainted before I could get there, landing face-first on a hard tile floor.
Syncope is played for laughs in sitcoms and cartoons, but when it actually happens to you, it’s painful and terrifying. My wife said the house shook when I went down. I woke up in a pool of my own blood with her kneeling next to me, frantically talking to a 911 operator about whether or not I was still breathing. Thinking of how long it took for her to get to that point, I figure I was unconscious for a good thirty seconds or so. As consciousness slowly returned and I gradually realized what had happened, I managed to give her a thumbs-up and, while still face-down, a rather slurred “I’m OK”. The ambulance arrived soon after and hauled me off to the ER for a thorough inspection.
Despite the scare, I had had my first bit of luck: the damage from my faceplant wasn’t nearly as bad as it could have been. I had bloodied my nose inside and out, but hadn’t broken it (though I did end up with some badass bruising). My lip was pretty deeply cut on the inside, but not cut through, no stitches required. My upper incisors were loose, but the dentist said they would tighten up over the next several months. I had seriously bruised my knee and would be limping for the next few weeks, but hadn’t actually broken any bones. My forehead was red, indicating contact with the floor, but not terribly hard contact; I’m pretty sure I have my soft, squishy nose and lips to thank for absorbing most of the impact. A CT scan showed no brain injury, no cervical injury, no skull fracture, no vascular damage. After about four hours the ER staff concluded I wasn’t going to die from my injuries, so they released me and said I should go get my fainting checked out. I agreed.
The next day I had a video consult with a family med doc, who got me lined up for a cardiac ultrasound and Holter monitor, both of which got done a couple of days later and showed no cardiac issues. Still no particular suspicion, just a “let’s see what we see” kind of thing.
The family med doc also gave me a referral for a video consult with a neurologist. That got scheduled a couple of months down the road, but then I had my next bit of luck: a cancellation let me move the neuro consult up to the day after my cardiac workup, just four days after my syncope. This was productive: at first the neuro was leaning toward cardiac issues (the “all clear” results from my cardiac workup hadn’t come in yet), but I emphasized that every single one of my episodes had begun with something popping/pinging/snapping in or near the right side of my neck, and she changed tack. She ordered an MRI of my neck, and on the test order, I saw that she very specifically suspected Eagle syndrome. That was the first time I’d heard of it.
More good luck: the MRI was originally scheduled several weeks out, but a cancellation let me move it up to just two weeks after my syncope. My wife and I started scouring the internet for info on Eagle syndrome. It turns out that a CT scan is the gold standard for identifying elongated styloid processes and calcified stylohyoid ligaments, so I was a bit puzzled that the neuro had ordered an MRI. Indeed, the radiologist who reviewed my MRI results said that the MRI showed I had those features. But then he went on to say that you could see them much more clearly on the CT scan that, by yet another bit of good luck, I had received in the ER two weeks earlier.
OK, so it turned out I had the anatomical irregularities and symptoms that line up with Eagle syndrome. It all made sense: the bone and/or ligament were snagging nerves in my neck, probably either the vagus nerve or the carotid sinus nerve, and causing reflex syncope and near-syncope events. My wife also found out that sudden-onset nausea like I’d been experiencing is a symptom of a sudden, large drop in blood pressure, which is almost certainly the thing that made me dizzy six months ago and had also just landed me in the ER.
After that I was walking on eggshells, trying to minimize my neck movements, living in fear of causing another one of these awful events. I now understood that if I had one of these ping/pluck/pop incidents and subsequent nausea, I didn’t have the luxury of running to the bathroom to throw up: for safety’s sake, my only option was to sit or lie down on the floor wherever I happened to be, in the hopes of staying conscious or at least mitigating the damage if I actually did pass out. In the middle of a grocery store? In the middle of a big meeting at work? It doesn’t matter, SIT DOWN, ON THE FLOOR, RIGHT NOW. If you’re going to throw up, throw up right then and there while everyone around you stares and wonders what’s happening. Or don’t throw up, and leave everyone wondering why on earth you suddenly jumped down out of your chair onto the floor. I stopped riding my motorcycle, fearful of syncope while in the saddle. Nobody told me I ought to stop driving, but a case could be made that I should have; I just did my best to minimize head movements while behind the wheel. Even with careful management of my neck movements I still had small ping/pluck/pop incidents now and then, but never again with subsequent nausea.
Meanwhile, I went back to a family med doc and asked for a referral to whatever specialty I ought to be seeing to deal with this. I got referred to a head-and-neck specialist within the university’s health care system. Their office said they’d review my case and get back to me with an appointment for a consultation – probably six months from now. Holy shit, I absolutely did not want to wait six months for a mere consultation, followed by maybe treatment I-don’t-know-how-many-months later.
It was around this time that my wife found this place in Los Angeles:
I paid for a Zoom-based consultation, and after uploading my CT scan data and other relevant medical info, I got to talk to the surgeon the very next day. He is a great communicator, very thorough and personable. The meeting was a detailed review of the proposed surgery (“stylohyoid ligament resection”), his extensive experience with it, the timeline, risks, side effects, recovery path, and so on. There was a chance my insurance wouldn’t cover this, but I was fortunate to be in a position to pay out of pocket for the surgery and just accept the risk that I might not get reimbursed afterward. So I made the appointment, and my wife and I started getting things in order. Plane tickets, hotel near the surgical center, rental car, a lot of documents to be filled out, and a pre-op physical and bloodwork from my local family med doctor.
The surgery was scheduled for two weeks after that Zoom meeting, so all of that stuff happened in rapid-fire succession. My anxiety ramped up over that period: I was still on edge about the risk of another syncope event, and now I also grew anxious about any little thing that could potentially derail the surgery, like a cancelled/diverted flight, a car crash or breakdown on the way to the airport, or even a cold (for the week before the surgery, I masked up when in public). It was a domestic flight, but I scheduled our Uber ride to the airport three hours ahead of departure so that we’d have time to call a taxi if the Uber driver was a no-show (he showed). No joke, I cried with relief when the plane finally landed at LAX, knowing that the surgery was pretty much a sure thing at that point.
We flew out there on a Monday and got settled in our hotel.
On the Tuesday there was a pre-op meeting with the surgeon, as well as a phone chat with the anesthesiologist, and I had to visit a pharmacy to get prescriptions filled for antibiotics and Vicodin.
The surgery took place on the Wednesday. It was expected to take only a couple of hours, but it actually lasted over four hours. Apparently access was a bit more difficult than the surgeon had anticipated, and there was a bit more calcified ligament to be removed than expected. The incision was supposed to be little over an inch long, but it ended up being about 2.5 inches long – starting from the top/front of my ear’s tragus and extending down below my earlobe. After a bit of recovery from the anesthesia, my wife drove us back to our hotel room in the afternoon. My head was snuggly wrapped with a compression bandage, and a drainage tube had been inserted through a separate small incision behind my ear. The pain wasn’t too bad; I was able to manage it with an occasional Tylenol, and never took any of the Vicodin.
Thursday was the first follow-up appointment. The compression bandage for that first 24 hours was quite uncomfortable, and I was relieved when they switched it out for something that wasn’t so snug.
Friday was the second follow-up appointment. This time the drainage tube was removed. It had been really annoying since the surgery, and the removal was rather painful. I was crying with relief after it was out; that irritating tube was finally gone, and this was a really big landmark on the road to recovery. We were free to go home at that point, though we elected to wait another day before flying back to Michigan.
Two days later, I was allowed to remove that kinder, gentler compression wrap. More tears of relief, another big step toward “normal”.
Seven days after the surgery, my wife carefully snipped out the stitches for me. The stitched incision looked like a tiny shibari-bound sausage on my cheek, but over the next few days, the skin relaxed and the scabs disappeared. Weeks later, the scar in front of my ear is virtually invisible, and below my ear it’s not terribly prominent either.
And even if the incision had been made with a rusty pruning saw and my scar had somehow turned out to be a jagged six-inch long mess, I honestly wouldn’t have cared. My symptoms – the popping/pinging/plucking, the sudden-onset nausea, the lightheadness/syncope – are 100% gone, along with all of my associated anxiety. Pure, joy-inspiring relief.
There were, however, some minor side effects:
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Jaw pain. For about a week after the surgery, I had difficulty opening my mouth very far without pain. I could bite with full force, but I had to chew very mindfully to avoid opening far enough to cause pain. This subsided over time and is now completely gone, but eating during that first week was an exercise in frustration and frequent pain.
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First bite syndrome. This is a thing that happens to some folks when there’s surgery on or near the parotid salivary gland (below your ear). Nerves in the area get irritated, and from then on, the first bite of a meal results in several seconds of pain in that area. It feels sort of like the pain you get when biting into an extremely sour lemon, but a good bit stronger. It only happens with the first bite of food; I have to pause and wait 10-15 seconds the pain to subside, and then I can finish my meal without any trouble. The pain doesn’t happen again until the whole thing “resets”, i.e. if I stop eating for half an hour or so. The surgeon had warned me that this might happen, but said he’s never seen it persist for more than a few months.
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Severed greater auricular nerve. The GAN provides sensation to your earlobe and a bit of surrounding area. The surgeon warned me that for some folks, this nerve is simply in the way and there’s no choice but to cut it to gain access to the target area. Turns out I’m one of those folks, and now my earlobe is completely insensate. It feels like a dead piece of ham taped to my ear; you could probably hack it off with hedge clippers and I wouldn’t feel it. This is likely permanent. While it’s technically possible to reconnect severed nerves, it takes special expertise and equipment, and adds time and risk to the surgery. Supposedly it’s not something that gets done unless it has a major impact on quality of life (e.g. motor control nerves for your arms/hands/fingers). In the scheme of things, being able to feel one’s earlobe just isn’t that important, so it looks like I will live the remainder of my life with one dead-ass earlobe. No biggie.
In the past few months I’ve read a lot of horror stories from people with Eagle syndrome who have struggled for years to get a solid diagnosis and treatment, and I’m relieved that things have moved so uncommonly fast for me. If you or someone you know is dealing with intermittent unilateral face/neck pain/numbness, or nausea/syncope associated with certain head/neck movements, ask about Eagle syndrome. If resection surgery is indicated and nobody in your area is qualified to do it, I’d highly recommend the surgeon I used, although I understand there are a few other experts around the US who have comparable experience. Best of luck to you as you seek answers and a cure.
Wow! The human body sure is complex in its modes of failure. I’m glad you have relief, and hope that insurance comes through!
Great post, thanks.
I’ve been experiencing sudden nausea without dizziness for a few years now and worked with my doc a little on it. It’s usually minor and, as you describe, passes quickly but very unpleasant during. I’ve vomited twice. I’ve mostly eliminated ear & balance causes as well as food (mine are almost always empty stomach in the morning) but I hadn’t heard of Eagle or considered a similar referred nerve cause.