Am I looking at the right thing on my xray here?

[Kmarty14]

Hi all! New to the forum but I’ve been looking into Eagle for a while.

Brief health history
I am a 31yo female. I have had chronic migraine, daily headache, anxiety, and depression most of my life. I also have been recently diagnosed with fibromyalgia and ADHD. I have military neck and have had neck an shoulder pain for most of my adult life. Also, in case it is relevant, I have had a benign bony growth removed from my left year (9yo) (recent visit to ear specialist showed no issues in that ear). I also had a my tonsils and adenoids removed (10yo) and septum deviation and sinus surgery (29yo).

Main symptoms
My biggest issue is headaches and migraines, though honestly brain fog and sluggishness are a pretty big issue too. I just kind of never know if I’ve have energy and concentration or if I’ll be in pain and out of it, which makes it hard to be a reliable, functional person. My migraines have gotten much worse the last few years to where I struggle to function without preventive medication. At their worst, the migraines have features of vertigo, nausea, photosensitivity, sound sensitivity, facial pain, some optical issues, speech issues, etc.

Eagle Connection?
Someone with Eagle pointed out that my symptoms and some of my medical history sounded like they could be Eagle related. After a MRI at my neurologist I was told there was no Eagle present. More recently, I had my head and neck xrayed at an upper cervical chiropractor and the pathology report noted calcification of the stylohyoid ligament, which immediately sent up red flags for me.

I was able to obtain a CD of my xrays and do some looking myself. I am no doctor so I could be entirely off base with my reading of this xray, but after studying lots of images of Eagle online and comparing them I really feel there may be an issue with the left styloid or the stylohyoid or both.

To the best of what I can tell one measurement showed my left styloid process and/or stylohyoid ligament ossified or calcified for 42.4mm. Another view showed it at 38.5mm.

What I could use from the community here
As many of you know, it is a real difficulty finding and getting to an Eagle specialist. I did some research and I did find what I think is my nearest Eagle Specialist. But they would be out of state, over 500 miles away. I’d have to take off work and I am not yet sure my insurance would cover it.

I have done my best to label my methods for measuring and clearly show what I’m seeing. I was going to attach images or links to images here, but it won’t let me so if you’d like to help me with a second pair of eyes we’ll have to email or something.

Either way without or without seeing the images, based on my untrained eye looking at some xrays and on the symptoms, is it worth it to go to the time, effort, and cost of seeking out the specialist?

Am I barking up the right tree or am I grasping at straws?

[Isaiah_40_31]

Thank you for sharing your story @Kmarty14. I’m sorry you’ve been suffering for so long.

This site’s system won’t let new members post images until they’ve posted a few times. I will go into your acct & make an adjustment so you can upload images sooner.

Your symptoms definitely sound like vascular ES & probably with IJV compression (usually the IJV is compressed between the styloid process & the transverse process of the C-1 vertebra in these cases). The best doctor to see for this is Dr. Hepworth in Denver, CO, though Dr. Hackman in NC has also helped a number of our members who have VES. I hope you’re able to travel to one of them for your care.

[Kmarty14]

Thank you! Yes, I was looking at Dr. Hepworth. Next week I’m seeing a headache specialist in OKC so I’m kind of juggling that first but then after that I’m thinking I’ll likely give this a go.

[Kmarty14]

Also, after doing some reading on here and kind of studying those xrays, I decided to palpate around my neck.

Definitely can feel a difference. Right side in that area no pain, no hardness.

Left side I run into something. Unsure if it is a hard muscle knot or bone but, from looks of it, bone would make sense.

Most notably, when I press in on the area I hear loud pulsing in my right ear. Pain radiates up through head and I get lightheaded. Noticing particular discomfort behind bridge of nose and forehead. Its been probably 10 minutes since I did it and I still feel a little wonky. Not awful at any point, but certainly not pleasant.

[Isaiah_40_31]

Your styloid does look quite long. It would be good for you to get a Ct scan of your head & neck that shows the area from skull base to hyoid bone for a
more definitive diagnosis. It would also show whether your stylohyoid ligament is calcifying from the hyoid end as well as showing what the right styloid & s-h ligament look like.

It’s not uncommon for people to be misdiagnosed based on MRI images because MRIs predominantly show soft tissues which can block the styloid. Besides that, some radiologists aren’t familiar w/ ES & don’t know exactly what they’re looking for in that type of scan.

[Isaiah_40_31]

What you did most likely closed off your IJV temporarily & the response you feel is a result of that. The facial pain is likely coming from your trigeminal nerve which is also often annoyed by an elongated styloid. It has 3 branches - one that runs up above the eye brows & down into the nose, one along the upper teeth & one along the lower teeth.

I could feel my left styloid under my jaw. I thought it was an inflamed salivary gland at first. When I poked it, the front of my neck would hurt in my thyroid area. I could feel the right side even though it was also elongated because it was growing at different angle & was deeper.

[Kmarty14]

Tickling the trigmenal nerve would certainly explain the migraines. The older I get, the more sensitive I get to any headache stimulus. It has reached the point that if I’m not on Aimovig, it feels like that nerve is constantly firing. Even with the Aimovig, I wear special migraine glasses, regulate diet, stay away from loud noises, etc.

I have always wondered about the possibility of trigmenal neurolgia because nothing has ever come close to explaining the intensity of pain I get at the bridge of nose in particular, though the muscles over my cheeks and the area of upper inner eye socket near nose take a bad beating too.

I always thought I couldn’t have trigmenal neuralgia bc you hear such horrifying stories. I am not that touchy, though a while back once I did call my mom sobbing in despair repeating over and over “my face hurts so bad.”

[Isaiah_40_31]

I’m sorry for how much & long you’ve suffered. The pain behind your eyes can be from the facial or possibly trigeminal nerve, IJV compression or both. One of my symptoms was the sensation that my left eye was being pushed out of the eye socket from behind. I got to the point where I checked myself in a mirror several times a day to see if that eye was bulging out further than my right one. When my left styloid was removed that sensation went way. This syndrome can cause the craziest pain & symptoms!