Figured I would see what ya'll think

Hello, still pretty new here. It’s been a really weird week for me. I’ve had jaw pain and tinnitus for quite some time but ignored it because I thought it was related to my autoimmune disease. I wound up getting a CT scan a little over a week ago because I started experiencing facial numbness and discomfort on swallowing. I thought I just herniated a disc in my neck. The report listed nothing of concern and they sent me home with muscle relaxers. But I picked up a CD to show my rheumatologist and my husband really wanted to 3d print my skull. He immediately thought something was weird with a long spindly looking bone behind my jaw. Upon some googling we came across eagles syndrome. We showed it to my rheumatologist but she admitted she didn’t really know anything about it but promised to send me to an ent and do some research.


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CRAZY that the radiologist who evaluated your CT didn’t comment on your styloids. They’re so obviously elongated!! Good work on your husband’s part creating the 3D images from your CT so you two could see what’s REALLY going on in your neck!!

You have a nice set of bilaterally elongated styloids, my friend. They are most likely contributing to your symptoms. Since your CT was done w/o contrast, there is no way to tell if they’re causing compression of your IJV or ICA. If you want to pursue that information, you’ll need to request a dynamic CT scan w/ contrast to view your internal jugular veins & internal carotid arteries w/ your head in various positions or in the positions you know cause your symptoms to increase.

I hope you’re able to see Dr. Old SOON so you can move forward toward getting those spikes removed!!

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They’re certainly long, as @Isaiah_40_31 says, how could a radiologist not comment on that :astonished:
If you don’t have symptoms of vascular ES (briefly dizziness, fainting episodes, head pressure, brain fog, more details in the Newbies Guide Section about common symptoms), then it might not be necessary to have a CT with contrast as that’s more radiation…but certainly worth seeing a doctor with experience in ES!
Great work by your husband!

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Yeah. I’m just scrambling to figure out how bad this is. My husband and I are supposed to be going to Japan in a month and we already had to cancel this trip because of my health once. Its incredibly frustrating. I do have daily headaches and neck pain its hard to differentiate possible ES with my autoimmune disease because it can cause neck problems and tmj. I’m still recovering from a nasty flare up after covid. I also sent my disc to a few people who do econsults.

If I were you, I’d move forward with investigation and any surgery very cautiously. I can see that @Isaiah_40_31 is excitedly suggesting to get the growths removed, but there are a few observations from my side:

a) in general, the 3D model shows a few additional things than elongated styloids/calcified SH ligaments. I highlighted them. Also the neck is quite unevenly looking, some spots might be just due to the position while lying in the scanner, but others could be something due to arthropathies/AS or other possible causes.



2, 6 - right side arcuate foramen
1, 5 - while many facet joints look uneven on the left side vs the right side, the left side facet joint I marked with 1 (and 5 in the other view) seems to look really odd to my eyes. Could be just position while lying in the scanned, could be some muscular tension pulling it sideways, or something else.
3 - I highlighted the part of SH apparatus which in my opinion shows just where the styloid process ends and the calcified ligament begins. While in reality they can be hard to tell apart as they eventually may become “one”, I believe this is quite a visually nice case where it might be possible to say, the styloid process looks quite normal length but the ligament starts becoming calcified/ossified.
4 - something that I have no good idea what this might be. Some calcification/growth is seen only on one side, opposite from the arcuate foramen, and it’s hard to tell what it is from just the 3D view. But it’s not supposed to be there in “typical” anatomy. I would guess it could be some congenital “bump”, a calcified lymph node, a growth (benign calcified tumour?), something like calcified tendon of one suboccipital muscles (ever had a trauma on the side of the head, or whiplash from one side?) or calcified segment of a blood vessel.

b) AS is a sneaky condition. I don’t know if it’s safe to have surgery in that area with active AS which is not for AS-related reasons, but that’s better to discuss with the experienced surgeon who had seen similar cases. I would be cautious about how the increased inflammation after any surgery may impact the spine in that area.

c) Given AS, there is a chance, that the body put the calcifications in place as the neck in that area was “too weak” to deal with all the affected joints, and surgery might destroy that additional reinforcement. Some people with mild instabilities in C0/C1/C2 area reported that the styloidectomy surgery worsened their instability. So that’s something to considered as well, and discuss with the surgeon before committing.

d) There is always a good chance the jaw pain and other issues aren’t caused by the styloids or calcified ligaments and they might have been just an accidental finding, but by ongoing inflammatory condition as you mentioned. Nerves can be very sensitive to inflammation in general without being directly irritated by bony structures.

P.S. Just found something not exactly related (the article talks about intervertebral ligaments) , but worth skimming through re AS and calcifications
https://pubs.rsna.org/doi/10.1148/38.2.160

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Thanks so much for the reply. The majority of the issues with my AS seem left sided. The only accident that I could have injured my neck in was when I was very little. I just started physical therapy for my neck so maybe things will get better. My rheumatologist has a copy of my scan I hope she takes a close look and will see something the radiologist didn’t. That was the case for my diagnosis as well.

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Update! My rheumatologist is an absolute blessing. I don’t know how she ended up in my very rural area but I am eternally grateful. She referred me to dr old and she shared with me that she is very interested to see what he thinks as well. I don’t know if surgery will be the right option for me given my other issues but I’m hoping I can get answers soon.

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That’s fantastic! I hope you’ll find the answer to what’s been going on.

As a side note, it might also be a good idea to talk with the physiotherapist about all this anatomical “layout” of your neck to make sure that no harmful exercises/stretches/maneuvers are performed, as those calcifications actually can increase the risk of neck blood vessel injuries. Especially while performing neck-stretching exercises like chin-tucks or head lateral flexion.

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Are you a medical professional? Just curious :sweat_smile:

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Nope - just went through this myself… Not the AS in particular, but all the sorts of neck issues…

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Further to @vdm’s suggestion about talking to you physiotherapist, it might be an idea to share this article; one of our ES members co-wrote this article:
WESTBROOK et al. (2020) - Eagle’s syndrome, elongated styloid process and new evidence for pre-manipulative precautions for potential cervical arterial dysfunction – Doctor info and research article - General / Research Papers - Living with Eagle

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Thanks for all the info. Dr. Old’s team contacted me they are gonna look at my scans first and call me in a few days to make an appointment if he believes this is eagles syndrome. I’m trying my best to not stress too much.

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I’m sorry you had to go through this too. I completely get you picking up medical terminology. My husband had a very rare cancer and as a chronic worrier I did WAY too much research. Everytime I spoke to his oncologists nurse she said she wanted to hire me because of it :rofl:

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Never too late to join the forces!!

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That’s rough luck, both of you having rare conditions…is your husband all clear now? :hugs: :pray:

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For the most part. He had some liver spots show up recently but they believe that is because of all the chemo he had. They are keeping an eye on it for now.

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That’s good :hugs:

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A post was merged into an existing topic: Possible jugular compression, CSF leak, intercranial hypertension. Advice?