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Eagle Syndrome - Online Support Group

Newcomer Here (06-2019) Eagles as result of Trauma

Hey everyone. I am so thankful to have found this community, it has given me some hope and outlined important steps I have to take…

I am 23 years old and have been suffering with eagles since i was 22.
My condition started one terrible morning where I was yawning extremely wide and stretching way back after just waking up from sleep… Then the most earth shattering snapping sound happened inside of my throat and the pain immediately brought me to my knees. I didn’t immediately go to a hospital from advice from family (honestly probably a poor choice) but suffered severe neck pain on both sides for 2 weeks, and was basically confined to bedrest.

Eventually the more severe pain passed and left me with many of the common eagles symptom, usually only on my Right Side:

  • General Pain and Muscle Tightness
  • The feeling of something in my throat when i swallow
  • Sometimes a “thumping” (NOT CLICKING) sound as if something is getting caught and grazing against some inner structure (id love if someone can explain that one to me,it only happens when my neck is already tight, and makes my neck pain get much worse for hours after these events)
  • Sharper pain and discomfort in Certain positions that makes sleeping difficult
  • And a whole lot of anxiety

After two months of those symptoms and waiting for busy ENT specialists i finally got my eagles diagnoses with a ct scan. (he didn’t see any signs of a fracture, so idk what the EVENT was months ago that caused all this) Was told it seemed to be a “mild case of eagles” whatever the heck that means, and that surgery was the only option IF i couldn’t handle the pain… He made it seem that it shouldn’t be that dangerous if i didn’t get the surgery… straight up told me i shouldn’t worry about stroke… So i procrastinated for a looooong time on making progress toward bettering my condition (looking for surgeons) and tried to live through it with some medications and other techniques like cold&heat, etc.

Fast forward 6 or so months and my condition has (as expected) not been alleviated. I haden’t slept well in so long… I started developing other random symptoms… Severe digestive issues, twitches in my neck, face, and temple, and a constant dry mouth…

Drs (despite knowing of my eagles and my pushing for that being a possible reason for ALL of my symptoms) pretty much ignored the eagles and went all out trying to treat my stomach symptoms as they had gotten more unbearable than the neck issue itself… I was put on omeprazole for 3 months, and my stomach problems only got worse and worse. I kept asking if i should stop taking it and my doctors always said no… I lost 20 pounds… im 6 foot and only weighed 140 beforehand… i was skinny already and didn’t have the weight to lose… Eventually i said screw this, and stopped taking the omeprazole and my stomach problems lessened a bunch in just a few days… While i was on the omeprazole i had a tension-like headache that lasted for nearly two whole weeks, hard to say if that was another newly developed symptom or a result of the medication (it can cause headaches) or both… haven’t had a long-standing headache like that in a month or two since stopping however…

Now its been almost a year since my original event (10 months since diagnoses) and things have been particularly tight in my neck this week… I don’t think I can handle this stress anymore… I lost my job because it was a high stress (0 downtime for 8 hours) environment and couldn’t handle even the lighter physical labor aspects of it anymore between the neck and stomach issues… Not having money has been an issue now… medical debt on top of school debt is very tough and stressful in itself… my GF has gone into some credit debt taking care of me and i feel more guilty about it every day… the family i come from is poor and have helped all they can, but times are tough…I’ve been trying to work from home, but haven’t had much luck with online jobs that pay anything decent… if you guys have any advice on navigating the US system for any kind of monetary support for people with health conditions, I need it.

Just this week i found this support forum and read through many many stories, it was like looking into a mirror. I wanted to cry but… the “choking up” sensation when your throat gets tight when you cry always causes me great pain… (laughing too hard as well for that matter…) i’ve legit not been able to show/have my emotions because of this condition for months and months… sigh…

I live in North Carolina and after reading through all of your stories I’ve decided surgery is probably the best option, with institutions like DUKE being here i hope i can find someone, if anyone has any names of DRs from the region id love them… Also realized that i should definitely get another CT scan (though i had 3 in the last year for my stomach/neck problems already ugh) WITH contrast this time to make sure things havent progressed and that i’m not gonna get a stroke from this… fortunately i haven’t been feeling many of the common vascular symptoms other than that one headache for that one period of time, and the occasional weak headache. (No wooshing, no dizzyness, no lightheadedness) … ONCE OR TWICE during bad flareups i feel my heartbeat bad in my throat and thought i was going to die >.<

Honestly my arms and mind are open to any support or advice… I appreciate this community just for existing… This is a sucky condition and It’s good to know we aren’t alone…

I’ve been dealing from intense anxiety and i can never get my condition off my mind… im going to be seen for the anxiety issues soon but as i understand it; eagles is not only is a stressful condition that can cause anxiety because it’s scary, but due to the specific nerves it can aggravate (as ive learned from this community), it can physically trigger anxiety (just as its likely caused my stomach and salivary issues) so i don’t know if i should go forward with those appointments… as i can’t really afford them to begin with hah…

Hi ThisisHard,

So glad you found us & have learned some good info about ES here. Thank you for sharing your ES story. I am so sorry for what you’ve been through & that you’re now struggling so hard financially. You’re very blessed to have a GF who loves you enough to go into debt to help you. That is really great! She sounds awesome! Were you diagnosed w/ bilateral ES or just on the right side?

I want to say straight up that there is no such thing as a “mild case” of ES. Anyone who’s had it will tell you that. I continue to secretly wish that any doctor making a comment like that should experience ES him/herself. :upside_down_face:

Several of your symptoms can be attributed to an irritated vagus nerve i.e. stomach issues, extreme anxiety, dry mouth & even possibly the neck tightness. A number of our cranial nerves “live” in the area where the styloid processes are & thus can become irritated when the styloid(s) is/are elongated or the stylohyoid ligament(s) is/are calcified. Most ES symptoms are the result of irritated cranial nerves. Each nerve when irritated can cause a variety of symptoms & pain in areas that might not seem related to something going on in the neck. That’s one reason ES is hard to diagnose.

You are right in saying ES can cause anxiety, and I speculate that anxiety is exacerbated by the pain & other symptoms & not knowing/understanding what’s going on or what to do about it.

I’m curious about the “thumping” in your neck. Does it happen when you turn your head or when you’re sitting still? Generally, clicking/grinding happen w/ movement & often indicate some calcification of the stylohyoid ligament. When the s-h ligament is calcified, it “tethers” the hyoid bone so it’s not free to move w/ head movement or swallowing thus pain & clicking/grinding sounds can occur during head/neck movement & then pain can remain afterward. This may or may not be your situation. A lot of doctors only diagnose ES if they see elongated styloids, however, calcified stylohyoid ligaments or a combo of elongated styloid & partially or fully calcified stylohyoid ligaments are also considered to be ES. It’s a shame that some doctors limit their diagnosis to just one possible variation of this syndrome.

It is my belief (I’m not a doctor) that your headache may have been predominantly caused by the Omeprazole, BUT another cranial nerve often irritated by ES is the trigeminal nerve. It has 3 branches in the face which radiate from the area of the ear. When irritated, the trigeminal nerve can also cause a world of hurt - everything from migraines to aching ear(s), eye(s), nose, cheek(s)/face, teeth, TMJ & probably some other things I’ve forgotten. If your headaches continue at any level, it is possible they’re coming from a trigeminal nerve issue caused by ES.

I have happy news for you - there are some doctors on our list from your state & a couple of them are at Duke:

North Carolina:
•Dr Donna Sharpe , Duke, Durham 919- 220- 2020 https://www.dukehealth.org/
•Dr Richard Gillespie, Monroe 704- 289- 8220 http://richardgillespie.md.com/
•Dr Matthew Ellison, Duke, Raleigh 919- 862- 5730 (recommended by one member although didn’t diagnose her calcified ligaments as ES)

If you’re interested in what the forum members who saw them have to say, use the magnifying glass icon above to search a specific doctor’s name. Any post where that doctor is mentioned should pop up for you to read.

I’m not sure you need to get another CT scan. I’d contact one of the doctors on the list & present the scan you already have at your appt. If the doctor wants more information, then (s)he will request you get another scan at that time. The symptoms that you think might be vascular could also be stress related & not actually vascular. My ES surgeon wouldn’t even look at a CT scan w/ contrast. He wanted just a plain CT which fortunately is what I’d had done as requested by the ENT who diagnosed me. My diagnosing doctor was not my surgeon which is often the case here.

I hope you find this info helpful. Please feel free to ask any questions, voice concerns or just come here to chat & find comfort & encouragement.

:blush:

First, thank you so much for responding! <3 Yes i am very grateful for my girlfriend, they’ve given me everything i need to get through the hard times… and have given me more love than i could ask for. But hearing from you is amazing. And thank you for the links to doctors, the calming words, advice, and camaraderie.

The “thumping” is honestly the most concerning part about my entire condition to me,
as when it happens things always feel much worse afterwards…

It occurs when my neck is already particularly tight, and i can usually feel it coming like a growing pressure. Usually its a change in position, yawn, or often a swallow that pushes my tightness over the edge and results in this “thump” sensation. Best way i can describe it is if you put pressure on a tendon in your wrist or leg with a finger, and sliding your finger across the tendon, making the skin “thump” across it.

My greatest fear is that maybe this sensation is a bone grinding against an artery or vein, as occasionally after a bad “thump” or series of them my pain and tightness gets bad enough where i can feel my heartbeat in my neck… its almost like a dislocating feeling but not really…

Sounds like you’re having a really tough time, but getting diagnosed is half the battle, so you’re part way there, some members have struggled for years to get that!
I hope that you can get some treatment soon; I’m UK so can’t give any advice about finances & the US system I’m afraid, only to say stick to a doctor on the list to avoid wasting time, as Isaiah says, & I agree too about not rushing to get another CT done for now.
Good luck!

Hello

You are totally doing the right thing to explore surgery! I am in the UK and trying desperately to find someone who will operate. My symptoms came out of the blue in January (age 40) and I too was treated for reflux with Omeprazole. That drug is hideous, I had every side effect in the list and my blood pressure dropped to dangerous levels. I have had an endoscopy and a barium swallow because the motor function of my swallow has changed, and it has been so painful to swallow even my own saliva. I dont have saliva now I am on neuralgia drugs, constant dry mouth, which doesnt make the pain in the throat any better! I was also treated for bacterial and fungal throat infections although neither actually existed, and was then offered anxiety support because it was ‘globus’ and all in the mind. I saw a private ENT who put me on amytryptiline, which has been helping mask the symptoms but im on a very high dose and im still in agony a lot of the time. 3 months in…my symptoms sky rocketed when, like you, I was opening my mouth wide. I was merely doing front crawl at the swimming pool. Something snapped, my tonsil area (no tonsils) stretched and then all hell broke loose with neuralgia and mechanical ear/head/neck/throat/tongue/chest/arm pain. The ‘bone’ now pokes and prods all around my throat and pharynx depending on what angle my head is at, and I have started getting choking/vascular pains. I do believe this condition can present you with a risk of vascular difficulties and as im sure others will tell you, the styloid doesnt have to be very long, it can just be at an odd angle to give symptoms. I dont think mine is that long but its certainly there! I want stroke risk removed regardless of the risks of surgery. Im currently consulting with consultants (!) to find out what options I have and then I will be sitting it out until surgery can be done. Wishing you bucket loads of good luck in finding help quickly. Thank goodness for this forum and all these wonderful people.

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@ThisIsHard

I am sorry to hear that you are having a difficult time. I completely understand your anxiety. My anxiety was through the roof before I had a diagnosis and when the pain spiked. If there is a place, distraction or method that you find relaxing, like meditation, a hot bubble bath or a walk in nature, do that as often as you can. I used a guided mediation on my phone that helped. I also started painting which was a huge distraction. Ultimately my general practitioner prescribed an anti-anxiety med which I took in very low doses to sleep. A good nights sleep helps with stress and your body ability to recover from the day’s activity.

I had a thumping sound - best described as if the styloid got stuck behind a muscle, then sprang loose creating the thumping sound. When that happened it would take my breath away. It happened enough that I (almost) got used to it.

It is always worse when my neck got tight. I found some relief with hot showers followed by ice packs. Most nights I could be found at home binge watching tv with an ice pack on my neck. I also noticed that my neck got tighter if I didn’t sit up straight at my computer - or when I bent my head too long looking at my phone. Our heads weigh on average 10 pounds. Bending ones neck all day with a 10 pound weight hanging off causes lots of stress on the neck. I understand that didnt start the pain, but it may exacerbate it.

I had stomach issues as well and went through lots of test to find out that there was nothing “wrong.” My doctor wanted me to take the purple pill but I did not go on it. The side effects from that only added to the anxiety - and it only masks the issue, not relieve it. I found other ways that helped - apple cider vinegar and sleeping propped up. (Something I got used to and helped me post op)

All of the above was limiting in the relief it brought and I ultimately chose surgery. I am now almost two weeks post op for external styloid removal on the left side. The healing will take time but I already notice a difference in the poking, cheek, teeth and choking pain. yay!!

Everyone is different but you have to be your own best advocate. This is a journey, currently without direction, and eventually you will see your path to healing. I wish you all the best.

Peace,
BG

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Your particular symptoms seem VERY aligned with mine, that thumping sensation in particular sounds exactly like what i experience, it happens quite often at times and yes, is very very scary… To get more info that likely relates to me, seeing how similar our symptom were, were you diagnosed with any kind of vascular compression as well? (Or am i misunderstanding vascular structure in that it’s more random than i thought and person to person with what is affected, even with similar symptoms)

You are brave to have gone through with the surgery, and I hope you have a speedy recovery and that I can get to where you are at in this journey before too long <3

When the “click” I had when I swallowed was at it’s worst, I described it as being flicked in the throat from the outside. The calcification makes everything tight and pulled in the wrong direction. Mine are both gone now and my swallow feels “free”. We’re here with you as you search for help.

Yeah i have to wonder if theres a difference between the “clicking” some people report and the “thumping” ive been experiencing. My styloid length is (likely) a result of trauma and as of 10 months ago was not showing signs of calcification.

@ThisIsHard Thank you for your kind words for speedy recovery.

The left side of my neck was visibly and palpably swollen. My ENT felt that it was my carotid artery so he sent me for a sonogram of my neck. My CT scan with contrast prior to this identified the elongated styloids as well as mild calcific atherosclerotic disease of my carotid artery.

The sono report indicated that there was “no atherosclerotic plaque within or visualized luminal narrowing of the common carotid or internal carotid arteries.” Two tests, two different results. Because of this I did not have a vascular ES diagnosis. With that said some symptoms I felt could be attributed to vascular ES: dizziness when standing suddenly, when lying flat on my back without my head propped up, when exercising, especially using my upper body that would stress or tense my neck, like lifting weights; immediate pressure in my head when bending over; frequent heart palpitations. It was my GP who said that if the carotid is compressed it sends signals to the heart to pump more blood.

So far, at almost 2 weeks post op, most of these symptoms are diminishing, though not gone. I haven’t lifted weights yet so I don’t yet know about that. Once the full swelling from the surgery is gone maybe all of these symptoms will pass as well. Here’s hoping.

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Well that calms me a little, I have not been experiencing most of the usual symptoms for Vascular ES (apparently some drs dont even differentiate though?? Why?) No dizziness, no lightheaded-ness, no bad headaches or passing out, no change in those when i turn my head around.

Though lesser headaches occasionally, rarely i can feel my heartbeat in my neck. Oh and my temple on the affected side twitches a lot and has some pressure, though its hard to say if that’s a vascular or nerve issue.

I can also SEE my pulse in my neck when i bend the neck back a little (even on the unaffected side though, so im guessing im just a bit skinny haha)

I really appreciate you taking the time to respond, BG. I’ve gotten more useful info,help, and support from this forum than months of time with the doctors I’ve seen.

I’ll likely start calling doctors offices suggested on Monday to see how to move forward towards surgery, but from what I’ve seen on the forums here it can sometimes take a bit to get an appointment. In the meantime, were there any medications that seemed to help you? Ibuprofen has had mixed results for me, and as it increases blood pressure and INCREASES risk for stroke i dont know if its the best choice for something that could also be vascular in nature haha. Maybe Aspirin??

It’s brutal that this disorder effects many different systems (bone, muscle, nerve, and veins/arteries) cause medicine that claims to help one, has side effects that can hurt the other. Same with heat/cold. Heat loosens my muscles but dilates the blood vessels and makes the nerves more sensitive >.<

Nerve pain medications like Amitriptyline can help- there’s more info in the Newbies Guide section about those. Some people have found lidocaine patches on the neck help too. Also muscle relaxants like Baclofen can help.
Dr Samji doesn’t seem concerned about whether ES is vascular or not, he treats it regardless, other doctors do use CTs with contrast to see what’s going on. It does sound like maybe you don’t have vascular ES. We are all a bit different anatomically, & as the styloids vary hugely with their shape, size, angle or pointiness (if that’s a word?!), that’s why symptoms vary so much, & can make it hard to compare symptoms exactly.
It is great to have this forum with so much input from members, advice & suggestions!

Thank you so much Jules for being an active voice in the community…

Since I posted unfortunately things have seemingly gotten worse. Do you know if vascular symptoms can come and go with time. And if I can not make these symptoms worsen through any type of head rotation, Is it likely that they are vascular at all?

In the last few days i have developed a lot of pressure in my temple and jaw (close to ear) regions. Occasionally turning into a slight headache for a minute or so at a time… Also for the first time today i had a dizzy spell while walking that frightened me as well as possibly this “brain fog” i’ve heard about…

And i can definitely feel what is my actual heartbeat in my temple (timed against taking my pulse) when doing anything remotely strenuous…

Should this be an urgent care or hospital type concern, or should i wait for a coming appointment in a few weeks?..

Worrying about debt from another hospital visit is nothing compared to having a stroke or something…

Vascular symptoms definitely worsen with head position; some members have even found they blackout when their head is at a certain angle.
I had bilateral jugular compression, which caused a build up of pressure in my head; I had headaches, pressure in my head & ears, constant off-balance feeling, strange feelings of falling, feeling pulse in my neck & pulsatile tinnitus. If arteries are compressed it can cause pain along the artery & eye pain, dizziness & black outs, so not sure whats possibly causing yours, although it could be from both maybe!
Stroke is very rare from ES, obviously if you were to get stroke symptoms then I would suggest that you go to hospital, but tbh for the ‘usual’ ES vascular symptoms there’s not the urgency unfortunately, & you probably wouldn’t get much help! I know they’re worrying- been there- but again I stress that strokes are extremely rare.

Hi ThisIsHard -

The sensations you’re feeling in your temple & jaw close to your ear that turn into a slight headache could be coming from your trigeminal nerve. This nerve often gets irritated by ES & can produce the symptoms you’re describing.