Help please! Detached Styloids

[Kimberk615]

I’ve been dealing with “a typical facial pain”—primarily around my eye, ear, and cheek on the left side—for the past 5 years following a car accident. The pain also radiates down my neck, and during flares, I experience throat tightness near the left tonsil. I’ve seen multiple top specialists in my area but still don’t have answers.

I have 3 CT scans, 1 CBCT, and 2 panoramic X-rays. All show that my styloid processes aren’t attached to the skull base—there’s about a 2mm gap. Could this be contributing to my symptoms? Any insights would be appreciated. Thank you! When using Radiant my styloids are only 1.87cm long so I don’t think elongation is the issue, but in all the scans I have the styloids are not attached to the skull base.

I also got POTs after the wreck so I feel like the Styloid may be compressing the Vagus nerve.

I can’t attach pictures - hopefully can once this post is approved.

[Isaiah_40_31]

@Kimberk615 - You should be able to attach images now that you’ve posted on the forum. I’ll check your account to make sure it’s upgraded so you can.

What looks like detached styloids to you may be calcified stylohyoid ligaments as they can calcify separately from the styloids. We’ve had some members who’s styloids were perfectly normal but the ligaments were calcified below the styloids.

Since I don’t want you to feel I doubt that you know what you’re talking about, I’ll also offer that the styloids can break off & move a bit away from the skull base, & even though there are muscles & other soft tissues in the area that help hold them more or less in place, if they don’t have an anchor point, I expect they can shift around a bit & be causing the pain you have. It sounds like your trigeminal nerve is being impacted by something as that’s the nerve most likely to be affecting those areas of your face.

Here’s a visual of the trigeminal nerve to help you understand what may be causing your pain:

[Kimberk615]

[Kimberk615]

[Kimberk615]

Thank you for approving me. It did allow me to attach pictures now under the comments. If you have a chance I’d love to hear your opinion. When I use Radiant to measure them, it appears it’s about 1.87cm or so. The “nub” on the skull measurements maybe 4mm and then there is the gap of 2mm or so. I definitely think my Trigeminal nerve is effected. They’ve tried blaming this on TMJ (even tho my condyles are fine) and now recently Occipital Neuralgia. I’ve been getting nerve blocks and Botox. They do help some of the symptoms but it’s never solved anything. I have told them over and over I have a weird pain under my ear and it’s just strange that’s exactly where the Styloid is. I see some of the top doctors at Vanderbilt. I even asked them about the Styloids having any abnormalities today and they completely blew it off. Very frustrating. I also have a lot of neurological symptoms especially when I’m in a “flare”.

Thank you for any advice

[Isaiah_40_31]

Sadly, Vanderbilt is not the place to go for ES. They are ignorant about every aspect of ES, & all of our members who’ve sought help for ES there have been turned away as hypochondriacs or stress cases or been told ES doesn’t cause the type of symptoms they had. I’m sorry you’ve had that experience, too. It’s sad that some of the largest & most advanced medical institutions in the US can’t help our members because they are clueless about this very significant syndrome.

Looking at your imaging, I’m having a hard time deciding whether your styloids are naturally very short & your s-h ligaments have calcified below them or if they were slightly elongated & a chunk has broken off each side. Regardless, you have serious calcification in your neck, likely stylohyoid ligaments. I suspect each side is longer than 2 cm, in spite of what RadiAnt says, & is most likely what is causing your symptoms.

These are the doctors we have on our list for TN. I believe any one of them would diagnose you w/ ES, however, if whomever you see doesn’t, and if you can travel, you should get an appointment w/ Dr. Trevor Hackman in Chapel Hill, NC, as I believe he would agree you have ES.

•Dr Mark Williams, Southern Hills, Nashville (615) 832- 2200 http://entson.net/contact-us/
•Dr. Kyle Mannion, 1215 21st Ave S #7209, Nashville, (615) 322-6180 https://vanderbilthealth.com
•Dr. David Armstrong, 901 Riverfront Pkwy #300, Chattanooga, TN, (423) 698-8981 http://chattanoogasinusrelief.com
•Dr. Marion Gillespie - Memphis - Department of Otolaryngology | UTHSC

•Dr. Trevor Hackman, UNC Ear, Nose and Throat Oncology Clinic – in the N.C. Cancer Hospital, 101 Manning Drive, Chapel Hill, NC 27514, (984) 974-6484

[Jules]

Very interesting images! Like @Isaiah_40_31 says, it’s impossible to say whether both styloids have fractured, or whether what you see are calcified stylohyoid ligaments, either way, it doesn’t matter as you have ES symptoms…although not as long as we see sometimes, they are very needle-like so easy to believe that they could be irritating nerves, and quite angled too. In some images though they do come down to the C1 level, which generally the ‘average’ styloids wouldn’t. It’s not easy to tell for sure from the imaging but it looks like on the left side the calcification is quite close to the C1 process, so could perhaps be squashing nerves between them?
I agree with @Isaiah_40_31 that it sounds like you could have Trigeminal Neuralgia, & possibly the Facial nerve could be affected, some of the nerve pathways are similar, & they’re both often affected by ES.
I hope that you’re able to see one of the experienced doctors!

[Kimberk615]

Thanks so much for all the information. I was going to go see Mannion but Vanderbilt has failed so many people I’m not going to even waste my time. I even reached out to the orofacial pain/dentistry people I see at Vanderbilt and asked them do I have Eagles syndrome or any abnormalities of my styloids and of course their response was no there are “no signs of Eagles”. They didn’t mention the gap or anything. I see the autonomic clinic there, neurology, pain neurologist, orofacial pain specialists and saw ENT / Neurotology when this started.

My PCP put in a referral for Dr. Hackman for me today so I’m hoping I can get in to see him and hopefully get some help - insurance seems like it’s going to be battle.

I had a MRI on my TMJs back in 2022 when they were determined it was TMJ. I happen to have a picture of the MRI still on my phone when I was attempting to look at the MRI myself. I’m going to upload it for y’all to look at. I’m pretty sure I have a picture of the Styloid in the picture and it looks like there is something wedged between the styloid and calcification? Or the broken styloid - whatever it is.

Thanks again I really appreciate the insight

[Kimberk615]

Thank you for your reply! I definitely have had worse symptoms on the left side until recently I’ve been having headaches daily and very strange neurological symptoms - my vision just seems off, sort of dizzy but it’s different. Both ears are full now. I keep having facial and ear flushing( not sure if this is a common occurrence or if it’s just because I’m hurting?). Also have very very low tinnitus which is new

I have a referral to Dr. Hackman so I’m hoping he can help me.

I have a MRI of my TMJ I’m going to upload and I believe you can see the styloid in the MRI. It appears there is something like scar tissue between the styloid and the calcification or the break?

Thanks so much for the insight

[Kimberk615]

@Jules @Isaiah_40_31

[Isaiah_40_31]

I’m really glad you’ve gotten a referral to Dr. Hackman. He WILL be able to help you. He’s very experienced w/ ES. Your recent symptoms of headache & dizziness could point to your calcification causing a bit of vascular compression, possibly of your internal jugular vein or internal carotid artery. Either of those can cause headaches, dizziness & visual changes. The sensation of ear fullness is a somewhat common ES symptom & can be caused by the trigeminal nerve. Facial & ear flushing are less common but we’ve had some members mention them, too. Tinnitus is a common ES symptom as well. Is your a steady sound or does it pulse with your heart beat (called pulsatile tinnitus)?

In the images you posted, it does look like you have some soft tissue in the space between your styloid stub & the longer bit of calcification, but I don’t know what it would be. It could just be a perspective issue i.e. something further inside that just appears to be sitting between them (does that make sense?)

[Kimberk615]

I really hope so! I’ve looked at so many pics of styloids and mine seem so odd which seems significant. He is not in my insurance network but surely I can make the case of all these doctors I’ve seen and no help and misdiagnoses (Blue Cross has spent well over 200k for nothing)

I’m cautiously optimistic that this has been causing all my symptoms since 2020. I don’t even feel like myself anymore especially when I’m having these neurological symptoms. I’ve read of some with IIH and I kinda wonder if that’s what the headache is too. This facial and ear pain is so strange. It literally started out as the most minor ear fullness and continuously has progressed where it’s almost unbearable at times plus the POTs just adds to the mess. I also had a lot of neck pain in the area about 4 inches under my ear (almost like a sharp cramp but no amount of stretching helped).

In 2023 I kept having the feeling something was choking me constantly - it was awful. I had all sorts of tests and the doctors blamed it on globus sensation from covid. It eventually subsided after maybe 6 months but I still have this pressing sensation halfway down my throat on the left side (I assume about where the hyoid is). It waxes and wanes but when I’m in a flare I really notice it.

It’s more of a static-y sound. Thankfully it’s extremely low and not overbearing like some people have. I’m sure that drives them crazy.

I agree. It’s super odd looking. I originally assumed it was maybe where it broke off and that was scar tissue attached? When I get everything squared away and send all my scans to Dr. Hackman I’ll include that one too just in case it may be helpful.

Obviously I have no official diagnosis yet but I really appreciate y’alls input and it holds a lot of weight to make me think this is a real problem. I can only imagine how many peoples images y’all have seen.

I will be ecstatic if this is causing issues as it seems like for most it’s a easy fix after the healing process. I’m still blown away that NO one has mentioned this has a possibility or even told me I had some sort of abnormality to keep an eye on. Every single doctor knew I have Pots and orthostatic hypertension and none of them thought that a detached bone or calcified ligament by the Vagus nerve could be an issue. No out of box thinking

[Isaiah_40_31]

@Kimberk615

No out of box thinking

ABSOLUTELY TRUE!

We have members whose POTS symptoms went away after their styloids were removed so hopefully you’ll be among them @Kimberk615. I’m glad your tinnitus is just static-y sounding & not pulsatile. That bodes well for your eye & headache symptoms not to be from IJV compression. Even the trigeminal nerve can cause migraine level headaches (I speak from personal experience). Headaches don’t always have a vascular cause.

I feel very optimistic about you seeing Dr. Hackman. I hope your insurance battle doesn’t go on long. There have been discussions on the forum about reaching out to the medical advocate in your insurance company. It seems health insurance companies employ people in that role. If it comes to that for you & there isn’t someone in that capacity at your insurance company, I’ll help you search for the posts about that on the forum.

[Kimberk615]

Thank you I really appreciate it. I will keep you posted on what’s going on. I was looking at the most recent panoramic I had at my dentist back in May of 2024 (all the other CTS and scans I have are from 2021 to 2023). Does the the tip of the styloid look broken to you
Or have you seen anything like this? It doesn’t appear to be just an artifact

?

[Jules]

They look jointed in the panoramic x-ray you’ve uploaded- that is quite common & the way the ligament calcifies, almost looks like finger bones! But the gap between the calcification isn’t common…Hopefully you’ll be able to get Dr Hackman’s take on it soon!

[Isaiah_40_31]

I agree w/ what @Jules told you. You do have an interesting situation, @Kimberk615. Again, I’m confident that Dr. Hackman will be helpful.