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Eagle Syndrome - Online Support Group

The oddities of ES

Hey everyone,

I’m new here and I want a thread to discuss the unique oddities of our ES diagnosis. Everyone’s body is different, therefore calcification and bone growth of the styloid can happen in different ways and cause varying symptoms.

With my recent Eagle Syndrome diagnosis, the doc noted two weird things in the CT scan. The first was that the styloid process is disconnected from the base of my skull on both sides. Not sure what caused this. Second, the other end of the calcified ligament does not connect to the Adams apple area. Instead, it just extends straight down my neck and finally tapers to a point, avoiding my arteries entirely. The last weird part is the swelling right around my parotid glands. It’s most visible when I open my jaw.

Aside from that, I’ve been having an endless list of symptoms. Nose pain, eye pain, you name it. I’ve had lidocaine injections in my nose and orbital area. I will be seeing the doctor in a few weeks. He will tell me if the bone is interfering with any nerves and if I should get the surgery. My gut feeling is yes, what else would cause me this pain? LOL

Tell me about your weird bone shape and odd symptoms I know everyone is different.

Hi BlueRiver!

Welcome to our amazing forum. Sounds like your ES case is extra interesting (none are ever boring, mind you!). Styloids can break off from the skull base for many reasons, but the most common would be neck injury such as whiplash or falling. Sports injuries to head & neck can also create that scenario & even coughing hard or laughing hard can cause that to happen. It all depends on the angle, rigidity, length, etc. of your styloids & how they’re compromised by your activities. The stylohyoid ligaments actually connect to the lesser horns of the hyoid bone so more to the sides of the neck than to the Adam’s Apple area.

https://www.google.com/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&ved=2ahUKEwijyPrB2d_iAhWS0J8KHaOhBkgQjRx6BAgBEAU&url=http%3A%2F%2Fnursingisinmyblood.tumblr.com%2Fpost%2F159992174245%2Feagle-syndrome&psig=AOvVaw3zqxh8FOuhmxdmcvCSmm2A&ust=1560282950613918

Your facial pain sounds related to trigeminal nerve irritation, but I’m not a doctor so please don’t take this as a diagnosis, just a possibility. A number of cranial nerves run through the area where the styloids “reside” & when the styloids elongate or the s-h ligament calcifies, these nerves can be impacted & thus create the crazy symptoms we get from ES. I’m attaching a picture below that shows the areas of the face affected by the trigeminal nerve. All are places you’ve mentioned having pain. Other nerves that we have most often noticed can be affected by ES are the vagus nerve (heart rate, vocal cords, anxiety levels, gastrointestinal issues), the hypoglossal & glossopharyngeal nerves (tongue, swallowing & speech), the axillary nerve (shoulder, arm & upper back pain), facial nerve (facial expressions & taste). My description of what each nerve influences is very general. You can Google cranial nerves & get more detailed info about each one & where each generally goes as it exits the skull.


The fact your parotid glands are irritated could explain why you have FBS. A few members have had it before surgery, but typically it doesn’t show up till post op. It’s a common side effect of surgeries in the part of the neck where the styloids are but also often resolves several weeks to several months post op.

Regarding surgery, it’s important to use a surgeon who has done a few (or many!) ES surgeries & is well acquainted w/ that part of the body - these are generally skull-based ENT surgeons or skull-based head & neck surgeons. Many are cancer specialists. There are several doctors on our US ES Doctors’ List who have done more than 300 ES surgeries each. Getting a second opinion from one of them is worthwhile even if it’s just to confirm what your doctor is telling you. I’m happy to give you names if you’re interested.

If you do consider surgery, it’s also important for you to know your surgeon’s surgical strategy - i.e. intraoral or external approach; both sides at once or one at a time; hospital stay or outpatient? We generally advocate the external approach for several reasons - better access to the styloid & s-h ligament so they can be completely removed from skull base to hyoid bone AND nerves & vascular tissues can be monitored. There is also less chance of infection w/ external surgery. Intraoral is through the throat & access to the styloid process is limited & there is little or no access to the s-h ligament. That said, there are a few doctors, who by making multiple incisions in the throat & roof of the mouth, have been able to remove the styloid fully & some of the ligament using intraoral surgery. Nerves & vascular tissues aren’t visible or able to be monitored as well this way. We do have forum members who’ve had good results w/ intraoral surgery. External surgery isn’t perfect either but does seem to be a bit safer.

If you feel comfortable about it, you can post a 3D picture of your CT scan so we can see your styloids & ligaments. It’s always interesting to see different cases of ES. Most of us are not so good at understanding what we’re seeing in CT slices though.

My styloids were long & ligaments partially calcified. I had a wide range of symptoms which started w/ neck pain. If you search my posts, I did list all my crazy symptoms some years ago (I’ve been a member since 10/14) & perhaps you can read them there.

Thank you for jumping into our conversations so quickly after joining. I hope you’re able to get great information & feel supported by this wonderful community!

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Thanks for the info, that blog you linked is very informative. When I visited the neurologist they did mention it seems like I have Trigeminal neuralgia and the ENT gave me the ES diagnosis after that.

I’ve been suffering with bad pain for years now and it’s very therapeutic to see others dealing with the same mysterious thing.

I’m going to get the image soon if I can. My styloid looks quite interesting, I would describe it like a shark tooth with a needle pointed end.

Hi BlueRiver,

Trigeminal Neuralgia is different than general Trigeminal nerve pain. I have Trigeminal nerve pain whenever I chew something because I have a deteriorating jaw joint. The pain radiates into my teeth, nose, behind my eye & causes an ear ache & can cause a migraine type headache but is not Trigeminal Neuralgia. I’ve read that Trigeminal Neuralgia causes sudden, unprovoked “lightning bolt” jolts of facial pain. I’m sure there are variations on that theme & am sorry if that’s what you’re experiencing. Facial pain of any variety is no fun so I do hope yours resolves if you have ES surgery.

There’s 2 types of TN : the electric shock type pain, & the constant aching or burning pain. I have the type 2, helped with amitriptyline, surgery has helped & stopped it worsening but not stopped it completely.
TN & GPN seem to be quite common symptoms with ES

my%20styloid%20bone2

The imaging notes 48mm length on both sides.

In the picture you see a cross-sectional of my neck. The 3 white areas on each side represent my two arteries and one styloid bone. The arteries appear white due to the contrast injected. Arrow points to the styloid bone (I think).

Hi BlueRiver,

I’m having trouble telling where your styloid is in the top picture. There is a lot of other stuff in the area where I’d expect to see it. My ineptness is due to the fact I’m not a doctor & don’t really know how to read x-rays. I’ve learned where the styloid processes, s-h ligaments & hyoid bone are over time as I’ve looked at others’ CT scans on this forum. Can you put an arrow on the picture to identify the styloid for us?

Thanks for posting this. There are always new things to learn!

Gladly.

I edited both pictures in my post so they are more clear for everyone. I think my arrows are accurate however they could be off. Good Day =)

Thank you! I thought that’s what you were looking at, & I questioned whether or not it’s the styloid process because it goes so straight down. In hindsight, that could be because of your head position when the scan was done. It does look quite long & pointed, however, part of the length could be some calcification of your stylohyoid ligament.

I would say that my head was in a normal position, laying on a contoured pillow.

In regard to the physiology of my skull, I notice the corner of my jaw seems to line up with the 3rd vertebrae, whereas in most human specimens I have seen the jaw lines up closer to the 2nd vertebrae.

Finally, I will say the doc noted the styloid process was unusually straight and the stylohyoid ligament is indeed calcified; it doesn’t attach to anything at the bottom.

Next visit with the doctor is in 3 weeks. I will make sure to clarify these details for the sake of science!

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Good plan regarding your next doctor visit, BlueRiver. Are you seeing someone who’s fairly experienced w/ ES? If not, have you read over the US ES Doctors’ List?

Here’s the link for it in case you haven’t seen it:

Hi everyone,

First I want to add a correction. I will remove the image that I didn’t accurately represent. That profile view didn’t have a good read of the styloid process and the arrow was just pointing to my neck ligament. My bad! =)

Adding a few updates: had a procedure to test the pressure in my jugular veins. They started at the upper thigh, tapping into a vein and putting a tube that would go through the femoral artery and all the way up to my neck. The result is some minor interference on the left side with the jugular. When I turn my head to the left it does interfere with the jugular even more. This alone can cause headaches. Very exciting results.

Now that my veionus interference had been diagnosed, it is time to assess the nervous interference if possible. EMG (electrode) testing to evaluate arm and shoulder involvement. I will be seeing the eye doctor soon to test ocular pressure. I will be doing a sleep study to assess breathing and sleeping patterns.

With all of that is out of the way, hopefully we can better determine the next step. Thanks for tuning in.

Good job leaving no stone unturned, Blue River! All the symptoms you’re describing besides the vascular ones can be chalked up to irritated cranial nerves. In your case, I would say accessory (shoulder & arm), trigeminal (eye issues) & vagus (breathing) nerves. I’m not sure whether or not an EMG will give you that specific info though it will be interesting for you to try it. The symptoms you have all align w/ ES & w/ the nerves & vascular tissues that get irritated by elongated styloids &/or calcified stylohyoid ligaments.

Please continue checking back in & letting us know what you learn. We are all students here. :blush:

Very thorough…good to have lots of info to help make decisions about future treatment.