Firstly, I’d like to comment on what a wonderful community this is. In the last two years of searching for answers, this is the healthiest, most helpful, and informed space I’ve come across.
Primarily, I’m looking for input on my CT images. They were done due to suspicion of mastoiditis and, as such, have a limited view of the styloid. The image I have inserted is a maximum MIP ( essentially, a selected number of slices are overlayed, and the maximum signal for each pixel from all the slices is retained in the final image).
Complete signal break occurs ~4mm from the temporal bone and is also present in the axial sequences when scrolling through (seems unusual for the SH ligament to start there)
Signal disappears completely
Slices are separated by 0.75mm (#2 and #3 =no partial volume averaging)
All the imaging artifacts that I have researched don’t fit
Strong aggravation from a bump on the bedframe in mid-2023
Had a neck that felt like iron for 2 weeks
Lasting symptoms since then, with a few aggravations here and there, and perhaps a 15% improvement in symptoms that could also just be through lifestyle adaptation( no more chewing gum, etc.)
Symptoms
Headache. Awful in the mornings, with activity, or eating/chewing
Generalized aches and soreness in the face, jaw, and submandibular glands
Stabbing pain in left eye, right throat, ear, and atlas area, with head rotation but not particularly repeatable ( if I get stabbing pains, it’s typically upon initiation of head movement; however, if I repeat the movement, I don’t get the pain again)
Fluttering sensation in the ear
Extremely sore anterior neck muscles
Occasional bouts of a strong burning sensation focused on the anterior neck and a little in the face (especially after eating)
Jaw clicks on the left side( jawpain is also worse on this side)
Pulsing vision on the left side( after, not during Valsalva, in the mornings, or exercise), as well as some transient visual obscurations on the left side when lying down
Occasional TOS symptoms
Sore lymph nodes, with prominent, dilated vasculature, especially on the left side. Somewhat enlarged (my lingual lymph nodes rose in 2022 to be visible in my mouth after COVID)
Dry heaving with activity, or neck exercises involving flexion and rotation
Tinnitus
My teeth click together with my pulse
Some thoughts and additional notes:
It is perplexing that I have symptoms on both sides. It does seem like both styloids are elongated, though the imaging is not sufficient. On my MRI, I found a saggittal slice where the right styloid seems to be visible(large dark stalicite, measuring 46mm), and cross-referenced the position relative to different structures on the MRI to the CT, which fit well. We’ve ruled out the typical neurological issues, and TMD alone just doesn’t seem to account for everything, especially given how functional my jaw still seems to be. Still got botox in the masseter muscles recently. My MRV came back relatively clean, though I’m still a little critical. I have an appointment in Bonn, Germany, next month that I am placing an unreasonable amount of hope on.
Thank you for enduring my rambling: I sort of lost the structure at some point, and it is very late here in Germany. Any input is appreciated.
Welcome to our forum, @TLEUR2004! Thank you for posting your imaging. Your right styloid looks quite long & on the left, it appears your styloid is short to normal length w/ a space between its terminal point & the longer piece of stylohyoid ligament calcification. However, it could also be that what appears as ligament calcification is actually a piece that broke off your styloid & has migrated slightly toward the hyoid bone. Regardless, both sides are plenty long enough to be causing you to have some uncomfortable symptoms. From the sounds of it, you may have some vascular compression, most likely of your internal jugular vein (based on symptoms you mentioned). Stabbing eye pain can relate to internal carotid artery irritation or compression. It can also be caused by irritation of the facial or trigeminal nerves which is common w/ ES.
Getting a CT scan w/ contrast should be helpful for you to get a more clear diagnosis. I’m really sorry it’s already been two years of pain for you without a diagnosis.
If you don’t come away w/ a solid diagnosis after your appt. in Bonn, Dr. Martini in Solingen has gotten some great reviews on here. You could try getting an appointment w/ him:
•Dr. Martini at St. Lukas Klinik in Solingen/Germany
Mund-, Kiefer- und Plastische Gesichtschirurgie - works together with Dr. Sarah Neering
Thank you for your reply. The ongoing database you have here of informed doctors is very helpful. An ossified stylohyoid ligament is always more likely I suppose though I suppose I am bothered by how early this ligament starts. If the signal break occurs at 4mm from the base of the temporal bone, would this not mean that the original styloid was only ~4mm long?
It does look as if your styloids are elongated, & given that you have symptoms common with ES it could well be that they’re causing issues!
Headaches are common, & if you’re noticing this in the morning it could be that you’re getting an increased pressure in your head (intracranial hypertension) which can happen with IJV compression- maybe try sleeping propped up with a wedge pillow or prop the mattress up a bit & see if that helps?
The Trigeminal nerve & facial nerve are often irritated with ES, which can cause pain/ stabbing sensations in the jaws, teeth, aide of the face, eyes & over the scalp. There’s some good pictures of these nerve paths by @Isaiah_40_31 & @babsbr in this discussion: Have chronic facial nerve pain diagnosed with ES, do you have nerve issues? - General / Eagle Syndrome Stories - Living with Eagle
The shoulder muscles can be painful or weak because of the spinal accessory nerve which can get compressed…
Quite a few members have painful, swollen lymph nodes too, maybe from the inflammation the styloids cause?
Visual disturbances have affected some members too, it could be from IJV compression, the facial nerve & trigeminal nerves can affect the tear ducts & motor function of the muscles potentially…
We’ve had a few members who have ES & TOS, so it seems some people are predisposed to compressions, it’s worth you getting a CT done with contrast to see if you possibly have some vascular compression from the styloids. Some members have managed to get dynamic CTs done, so if head turning affects symptoms this can be seen on the images, but it’s not easy to get done!
