Hello! I recently got to a specialty TMJ clinic so that I can have an oral device made for my sleep apnea that won’t aggravate my T-M joint, as I couldn’t tolerate a CPAP. In going over my dental cone x-ray (I think that’s what they called it, uploading 2 of my glamour shots below) imaging results they saved the best for last, 7 cm ossified styloid ligaments! The doc initially thought they were elongated processes but the official radiology report says ligaments, so I’m not super sure.
Anyway, I’ve definitely had neck / ear / face pain, headaches, and kinda weird swallowing for years but honestly, it was mild in comparison to other pain issues (endometriosis, fun!) so it just kind of sunk to the bottom of my priority list. I’ve also been seemingly stuck at the tail end of long-covid recovery since I got sick about 18 month ago, just cannot beat the brain fog and fatigue, and my migraines have increased. I thought my lack of healing was due to poor sleep caused by the apnea, which is what drove me to the TMJ clinic and this accidental discovery.
So now I’m kind of reeling from this news; feeling edified that I wasn’t imagining this pain and hopeful that it’s not fibromyalgia (which is where I assumed I’d land at some point), and wondering which other symptoms of mine are actually caused by this. The TMJ doc referred me the University of Minnesota neurosurgery and ENT clinics, but before they’ll even consult with me they’ve ordered a soft tissue MRI of the neck, with and without contrast, which will be done tomorrow night. I’m not sure how useful that will be but I feel like I can’t get through the door without it.
Any thoughts on the usefulness of a plain old neck MRI, and whether I should sink any energy into trying to get something potentially more useful done like a dynamic MRI or MRA on such a short timeline? Or should I just let them do this and suck it up if I need more / different imaging later?
I’m really glad I found this forum. Like I think is the case with many of us, I have an uncanny ability to end up with a lot of “rare” things, and it’s exhausting and isolating. It’s really nice to know I’m not alone.
Your styloidhyoid ligaments are pretty spectacularly long, @EagleRay! I can see that the right one is separate from your styloid process, however, your left side looks to be more like a joint where the styloid meets the the s-h ligament. Elongated styloids were given 3 classifications at some point - Langlai’s classification of elongated styloid process is based on three types of complexes—Type I, elongated; Type II, pseudoarticulated; and Type III, segmented. ( MacDonald-Jankowski DS. Calcification of the stylohyoid complex in Londoners and Hong Kong Chinese. Dentomaxillofac Radiol. 2001;30:35–9. [PubMed] [Google Scholar])
I’d say your left side is a Type II.
The thing about ES that’s not well defined is whether the styloid itself actually elongates or whether it elongates via the stylohyoid ligament calcifying. I believe this isn’t clear because the path of elongation for styloids is most often along the line of the stylohyoid ligament. When I was diagnosed w/ ES, I was told I had calcified stylohyoid ligaments, but when I look at my images, I see one styloid might have elongated on its own, but the other definitely was along the line of the stylohyoid ligament. I think how ES is defined depends on the perception of the radiologist or doctor who diagnoses it.
If you’re able to request the MRI be done dynamically & focus on the internal carotid artery (ICA) & internal jugular vein (IJV) (these are considered part of the soft tissues in your neck) that will provide the best information. Your doctor should be able to change his orders for the MRI w/o too much trouble IF he’s willing.
Wow, they are impressive styloids! I’m sure that you’ll feel better if you can get them removed, it will be interesting to see what difference in your symptoms that makes…
Unfortunately many members have to jump through hoops to get seen/ diagnosed, even when it seems pretty obvious what the cause is to any of us! So if you have to have an MRI & it doesn’t delay things then I would do it- I had to have one to rule out any other causes, & they did find a prolapsed disc C5-C6, which I was able to get some physiotherapy for, & it did help some of my neck symptoms while I waited for surgery, so it was worth it for me. If you could get the instructions changed it might be helpful as some of the issues you mention (tiredness, brain fog etc) could be vascular ES.
And I would definitely check who you’re due to see at the ENT clinic, as you don’t want to waste time seeing someone with no ES knowledge. There are several doctors on our list there with experience, here are their details in case you’ve not seen the Doctors List:
Dr. William Omlie, Surgical Consultants, 6405 France Ave S Ste W440, Edina, MN (952) 927-7004, Dr. William Omlie, MD, General Surgery Specialist - Edina, MN | Sharecare Dr. William Omlie works with his nephew, Dr. James Omlie, Maxillofacial Surgeon. They do the ES surgeries together. James is the expert of the skull base area & William is the expert of the jugular & arteries (vascular) areas.
•Dr Cha, Headache Clinic at the U of MN works with Dr Omlie, can diagnose ES & refers to Dr Omlie.
•Dr Frank Ondrey, University of Minneapolis Medical Center 612- 625- 7400 (Does intra-oral surgery in most cases & breaks styloid off close to normal length not at skull base. Also questions whether neurological symptoms are related to ES) https://www.ent.umn.edu/bio/ent-faculty/frank-ondrey
Best wishes & glad you’ve found the forum helpful!
Ohhhhh, I’m so glad for your message @Jules. Last time I called Neuro they said they were thinking of assigning my case to Dr. Ondrey but it wasn’t confirmed. Def. does not sounds like a good fit if that’s his approach / attitude, given my particular issues. And I didn’t even know UMN had a headache clinic?! Good to know. @Isaiah_40_31 had informed me that Dr. Omlie is not currently treating Eagle’s so I called to check and that’s indeed the case. He is no longer treating Eagle’s, nobody else in their office treats it, and they are not providing referrals to anyone else in the area. Their office phone number has changed also, FYI. It’s now 952-929-6994 (this goes to the UMN Vascular Health Center which is apparently where he is now). What a bummer.
I’ve been seeing a pretty good neurologist through the long covid rehab clinic, but when I told her about these findings she didn’t seem concerned that it had anything to do with the symptoms she’s been treating me for. I’ve already been through so many years of medical gaslighting that I’m both prepared for and already too exhausted by the BS for what I can already tell will be a battle to get this taken seriously. Anyone seeing the images I shared should immediately be concerned, right?? The TMJ doc certainly was, she had to call a colleague before she went over the results with me to make sure they were what she thought they were; she’d never seen them so long.
I TOTALLY AGREE with this statement @EagleRay!! Thx for the update on Dr. Omlie & his phone #. I guess we should remove him from our list as what you learned sounds pretty permanent.
I also have to say that I disagree w/ your neurologist. Though some of your symptoms may be long COVID, I would bet those long stylohyoid ligaments are either exacerbating the symptoms or are actually causing them. Of course, this won’t be totally clear until they’re out of your neck. If you can afford to travel out of state, Dr. Cognetti would be a really good doctor to see, but that will require going to Philadelphia for surgery. He will do an initial consult via video call so you could at least get an opinion from him w/o traveling.
Dr Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760 (Has done many successful surgeries on members). Only removes ligaments if calcified. https://hospitals.jefferson.edu/find-a-doctor/c/cognetti-david-m.htm
Well, this report does not feel very helpful. I wasn’t able to convince any nurse to ask the doctor to change the order to a dynamic MRI so they just did the standard. All they say is I have elongated calcified ligaments. DUH. I Guess I should be glad they didn’t see anything else scary but seems weird that there’s no comments on how the ligaments are sitting next to other important bits? I thought they could see nerves on MRI, no?
MR SOFT TISSUE NECK W/O & W CONTRAST
Not yet reviewed by care team.
IMPRESSION: 1. No acute abnormality within the neck soft tissues. 2. Elongation of the styloid process/calcified stylohyoid ligament typical of Eagle syndrome.
EXAM: MR SOFT TISSUE NECK W/O and W CONTRAST
INDICATION: Eagles Syndrome. Neck pain. COMPARISON: None available at time of dictation.
CONTRAST: Gadavist 7 mL
TECHNIQUE: Multiplanar multisequence neck MRI performed without and with IV contrast.
MUCOSAL SPACES/SOFT TISSUES: The aerodigestive tract is unremarkable without evidence of in-situ mass, however there is elongation of the styloid process/calcified stylohyoid ligament typical of Eagle syndrome.
LYMPH NODES: No pathologic lymph nodes by size or morphology criteria.
SALIVARY GLANDS: Normal parotid and submandibular glands.
VESSELS: Expected vascular flow voids are identified.
VISUALIZED INTRACRANIAL/ORBITS/SINUSES: No abnormality of the visualized intracranial compartment or orbits. Visualized paranasal sinuses and mastoid air cells are clear.
BONES: Normal marrow signal.
I’m sorry you weren’t able to get a dynamic MRI, but perhaps what needs to be seen is visible on the one you had but not fully discussed in the results. We’ve seen that repeatedly among our members.
Nerves can only be seen on a specialized MRI called a FIESTA MRI or neurogram (I’m not sure they’re one & the same) so your nerves weren’t visible even w/ the contrast.
A point of curiosity to me in your report is VESSELS: Expected vascular flow voids are identified. What does “expected vascular flow voids” mean? Does that indicate compression was noted? If so, it would be nice to get some elaboration there as that can definitely help determine whom you’d see for ES surgery.
Oh, that’s apparently a normal finding. Since MRI can’t visualize flowing blood, it shows a ‘void’ where there is blood flow. It does not denote compression.
I can’t get an appointment with Dr. Ondrey for a month with my work schedule, so now I wait…
Well, I took a look at my imagery and what do ya know, I have a slight bulge between C5 and C6 from what I can tell. That’s what I’m seeing, right? Odd and annoying that the radiologist didn’t catch this on an MRI for neck pain…
So it seems more likely that at least the neck and shoulder pain would be from the disk issue, right? That would be encouraging. I’ve had annoying neck / shoulder pain for a few months and thought it was just from poor sleep, then I thought the shoulder issue might be referred pain from the styloids, but looking at this maybe not.
Not an expert on reading MRIs, but if you’re right then it could definitely explain some of the neck & shoulder pain! I had a prolapsed disc in the same place, I was in lots of pain but it did improve with physiotherapy, and I had to stop sports which were aggravating it (cycling especially). I still had face and jaw pain from the styloids aggravating the Trigeminal Nerve and neck pain if my head was turned for too long, and vascular ES symptoms.
@EagleRay - It does indeed look like your disc is bulging a bit or something else is going on there, but your neck/shoulder pain could also be contributed to by your styloid since one of the nerves often irritated by elongated styloids is the spinal accessory nerve which innervates the SCM in the neck & upper trapezius & other muscles. When the SAN is irritated, pain can radiate from neck to shoulder & even down the arm. I had terrible pain in my collar bones from this but thankfully it went away after my ES surgeries.