All - an update to my original post. I had a CT scan without contrast and unfortunately, they did not find any elongation or calcification of the styloids. I was shocked because my symptoms lined up with eagle to a T, and I can literally feel (what I thought were) the styloids on the side of my neck away from the jaw line. My question is - could I still have some sort of compression/weirdly Angeled styloid which could be causing issues? Just holding out any hope that this could still be eagle because the alternative seems like it would be CCI (based on convos with chat GPT).
Symptoms include
• Voice tightness / strain
• Loss of vocal resonance / nasal buzz
• Globus sensation (lump or pressure in throat)
• Clicking when swallowing
• Choking sensation when lying flat or tucking chin
• Weak or absent gag reflex
• Loss of upper throat sensation during swallowing
• Constant throat clearing / mucus buildup
• Ear pressure and popping when swallowing
• Crackling or snapping sensation when pressing under jaw (like fingernail clipper)
• Tender, hard structure under jaw (cracky on touch)
• Swallow-induced clicking
• Symptoms worsen with THC (vagus sensitivity trigger)
• Palpable pressure or pain along styloid path
• Worse after talking, swallowing, or upright activity
• Brain fog flares when upright or post-exertion
• Temporary relief when reclining
Hi there @AugustWest94 . I’m sorry that you didn’t get clear answers based on your most recent CT scan. I am sure that you are frustrated because you are having a lot of symptoms and no one can seem to figure out what exactly is going on. I had CT scans, x rays, & MRIs & finally an ENT said that it could possibly be something called “Eagle Syndrome” but not to worry about it if my symptoms weren’t interfering with my life. After looking into it more myself & joining this forum which provided so much information, I went to one of the doctors recommended here to have him look at my images to see if he saw anything concerning. At that consultation, he said that he would go ahead right that day and schedule me for bilateral surgery for Eagle syndrome. So I was then officially diagnosed with that. I had been seeing multiple doctors who looked at imaging and they never picked up on the styloid involvement. I did do a little more investigating because I wanted to avoid surgery if possible and see if there was anything else I could do. I went to ,FL to have further imaging and an atlas-orthogonal adjustment to see if it would help at all (it didn’t) and the doctor there also recommended that I have surgery. I say all of this to encourage you to not give up trying to find the answers because you have a lot of symptoms that can be consistent with ES. I also just watched a video on CCI and some of your symptoms sound similar to that as well. If you haven’t already done so, I would suggest going for a consultation with one of the doctors recommended on this forum who have treated ES and know exactly what to look for and who can give you an expert recommendation of what else you can look into if it is not ES. Some of your symptoms also seem like they could be involving the hyoid bone. It is pretty complicated because the symptoms can vary so much from person to person and there are so many structures in that area of our bodies. I hope that you will find the answers very soon.. BTW, I am in VA too. I didn’t find any doctors in my area that seemed to have any expertise regarding ES. If you know of anyone, please let me know. Although I had bilateral compression, I have only had the operation for one side, so may have to have another surgery in the future.
I agree w/ everything @vap told you. We have quite a number of members who’ve been told they don’t have ES when they’re styloids were very long or ligaments were significantly calcified. It’s crazy that a radiologist/doctor would somehow look at a gnarly set of styloids & say nothing is wrong, but it happens.
I am highly suspicious that your hyoid bone is involved in your symptoms. You can contact Dr. Karuna Dewan in Louisiana to see about getting a consult w/ her as she specializes in Hyoid Bone Syndrome & would certainly be honest with you about whether or not your hyoid is a problem.
Dr. Hackman in NC is very experienced w/ ES & would be a good choice for a second opinion which I think you should get.
•Dr. Karuna Dewan, Ochsner LSU Health Shreveport - Academic Medical Center - Specializes in Hyoid Bone Syndrome surgeries
1541 Kings Hwy, Shreveport, Louisiana, 1-318-626-0050
•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
I agree with the others, we’ve had so many members who have had CTs done & been dismissed with nothing untoward, then we look at copies of the imaging & they do have elongated styloids! Sadly there’s a lack of understanding about ES still, plus it’s not just the length of the styloids which can cause symptoms, but the thickness and angle too, as well as the space between the styloids & C1 processes…As @Isaiah_40_31 mentioned about your hyoid, that may not even have been evaluated either. I certainly wouldn’t give up, try & get copies of your imaging, and as the others have said see if you can get a consult with a doctor who has experience.
Keep strong!
Your styloids may not be overly long, but they look pretty snug to your C1, and area where the internal jugular vein passes through.
Do you have the non-3D of your imaging? I find the axial view the best to see the compression. I’ve attached what the axial view looks like with my own imaging. Even without contrast the axial view can give you a good idea about the styloid-C1 distance.
Not with me but can grab that view and send it after work and tag you! Would there possibly be vagus/glossophareangal nerves there? The reason I ask my main symptom is vocal/throat issues which idk if the jugular involved that @TML
Yess! Between the styloid and C1 runs the IJV and both those nerves. See attached a photo showing where they are. If a styloid is too close to C1 than it could pinch all of those. Another area potentially worth checking in the axial view is your hyoid bone to see if they are jabbing into the carotid arteries, because the nerve run around down there too! Here’s a screenshot of the left greater horn of my hyoid bone jabbing into my carotid sinus, an area where vagus and glossopharyngeal nerve is as well.
Here’s the diagram showing the nerves around the carotid arteries which are typically at least nearby the hyoid. Sometimes (like me) the hyoid will get hung up in the area and wreak chaos
It would make sense though because for the past 5yrs or so, I have constantly and unconsciously been pressing and pulling down the area on my neck right beneath the ear lobe to relieve pressure. I have the biggest hunch in the world that something is indeed going on in that spot. @TML
Consider a telemed consult with Dr. Ryan Osborne. He informed me that the length is NOT the diagnosis. Too many Drs. for one are too unfamiliar with this condition and stick to outdated black and white text book description. This condition is NOT A ONE SIZE FITS ALL. In my case I was diagnosed with ES due to the length of my left styloid but my right styloid was the one causing symptoms. ( the one of “normal” size!) Why because of how thick it was. Not only that, I am so small framed that a “normal” size styloid wouldn’t fit my anatomy. Don’t give up, only you know your body. I am shocked that so many of my symptoms I over looked because I was told it was anxiety, it was stress, it was normal.
Your left styloid is VERY snug. Can’t tell if it’s entrapping the IJV or not since theres no contrast, but I’d be surprised if vagus and glossopharyngeal wasn’t getting irritated.
Take a look at the journal article by one of the doctors we frequent here, Dr. David Cognetti. Your styloid-c1 spacing looks similar to his patients in his study. They all had complete relief of their symptoms after styloidectomies.
@AugustWest94 I’d suggest opening your imaging using radiantviewer. It will let you measure the space between your styloids and c1 like I did in my photo above. Although research is limited, it seems that the space between styloids and C1 in healthy individuals is about 9mm. I have 3.5mm on one side and 4.5mm on other. And mine is warranting a surgery consult and yours look even more snug than mine. Again, there’s no contrast so I can’t speak to your IJV, but I’d be surprised if your nerves aren’t getting irritated in that tight space. I suspect that the ear fullness you experience could be IJV becoming on and off compressed but I’m not sure. An expert like Dr. Cognetti or other established head and neck surgeons often cited on this forum will know!
Edit: I labeled your CT so you know what parts are what
@AugustWest94 - What I notice in your 3D image is that your left styloid is significantly angled down almost like it’s partially wrapped around the transverse process of C1 on that side & is very close to C1. That position alone could be impacting your IJV & local nerves on that side. Your right side is straighter but still close to the TP of C1. @TML mentioned several times how snug your styloids look up against C1.
Additionally, the greater horns of your hyoid look thick, close to your cervical spine on both sides, & detached from your hyoid. This is not totally abnormal but is more rare than greater horns being connected to the body of the hyoid. The hyoid’s proximity to your cervical spine (i.e. how close it is) could be related to how straight your cervical spine is i.e. no lordosis whatsoever. Loss of cervical lordosis brings the styloids & potentially the greater horns of the hyoid closer to the nerves & vascular tissues in the neck than when the lordotic curve is present.
Finally, your thyroid cartilage has some interesting calcification, too, which may also be impacting your vagus/glossopharyngeal nerves. You’ve got sort of a packaged deal going on w/ several possible culprits contributing to your symptoms.
Getting a CT scan w/ contrast would help to show whether or not your IJVs are being impacted by your styloids. Unfortunately, nerves don’g show up in CT scans or MRIs unless you get a very specialized MRI called a FIESTA or CISS MRI. It can be challenging to find a facility that does that type of MRI & it may be very costly & isn’t really necessary at this point.
I think having a consult w/ Dr. Karuna Dewan in Louisiana would be money & time well spent. She does not do virtual initial consults so you would have to travel to see her. She also requires a referral from a PCP or other specialist. Another option is Dr. Cognetti in PA, whom TML is seeing in January.
Thank you @Isaiah_40_31 this is all such good info. I’m going to make my next step to be reaching out to a Dr who specializes in all this. I know you mentioned a couple of suggestion, but do you have any suggestions who are willing to do virtual consults?
I agree with the others that the gap between your styloid & the C1 process is really small - where the styloids are at the base of the skull, there’s a small opening called the jugular foramen, where the IJV, ICA, and the cranial nerves exit (glossopharyngeal, vagus nerve & accessory nerve & possibly the hypoglossal nerve) all together in a bundle, called the carotid sheath. So if the styloids compress these between itself & the C1 process because of it’s angle, the length of the styloid doesn’t really matter!
I can never remember which doctors do virtual consults, I’m sorry, hopefully others can remember!
Thanks! This kinda surprises me as I have most issues on the right side. I thought the pointy figure at the top of that image you edited was my nose so originally assumed the one with the smaller gap was the right styloid @TML
Doctors who I know do virtual consults are Dr. Cognetti in PA, Dr. Costantino in NY, Dr. Osborne (SoCal) & Dr. Samji (NorCal) in California, & maybe Dr. Nakaji in AZ. Dr. Cognetti does styloidectomies, hyoid bone surgeries & has a neurosurgeon assist when IJV decompressions are necessary, but I’m not sure about thyroid cartilage. We’ve heard Cognetti doesn’t charge for an initial consult but are not sure about that. Dr. Costantino does styloidectomies & also has a neurosurgeon assist for IJV decompressions, but I don’t think he works w/ hyoid bone or thyroid cartilage. Dr. Nakaji does styloidectomies & IJV decompressions. Drs. Osborne & Samji are excellent surgeons for non-vascular ES surgeries and both would be good for a diagnosis. Dr. Osborne’s initial consult fee is much lower than most.
•Dr David Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760 (Has done many successful surgeries on members). Only removes ligaments if calcified. David M Cognetti MD | Jefferson Health
