Hi y’all. My symptoms started in 2019 (entering my sophomore year in college), when I began having an intense pressure sensation in the left side of my throat that would simply not go away. It was intense and unrelenting, and I started noticing voice changes along with the pain. I jumped around from urgent cares to ERs being told it was probably strep, or allergies, or GERD. I eventually ended up at an ENT who basically told me “I can’t help you. Go to a research hospital.” During the pandemic, a neurologist said it was likely glossopharyngeal neuralgia. Eventually, I did make it to a University/research hospital. They told me it was occipital neuralgia, cervical dystonia, and myofascial pain syndrome. At the time, that made sense to me, as my pain had become I suppose more muscular in nature, in at least some sense, with pain now radiating to my shoulder (specifically shoulder blade), neck, and jaw muscles, though there was something odd about how my ear hurt. Whenever I put on a mask, the string would pull on my left ear and that would cause a very uncomfortable and painful sensation in that area. The pain has always somehow radiated up there. In any case, I still more-or-less think the doctors have it right probably, but recently I’ve been curious if Eagle’s is a possibility, since they only performed an MRI when they evaluated me at the University hospital. Recently, I’ve developed some more symptoms. I had to go to the ER for unilateral pulsatile tinnitus and migraine. That’s where these images come from. The radiology report said there was no “acute intracranial vascular pathology.” I do have to admit I have no clue what I’m doing as far as grabbing the right frames from the disc they gave me and was pretty lost doing the 3D reconstruction, but I tried my best (I’m not even sure if the styloid process is actually in these images, or if I goofed up). I’m wondering if anything looks concerning Eagle’s-wise when taking a look at my images. Thanks everyone!
Welcome to the forum… I’m so sorry that you’re so young and having to deal with this. Hopefully landing here will help get you to a resolution and perhaps the good side of that is you’re not living with this like many of us have into the later years of our lives.
You have landed on (in my opinion) the kindest most helpful group on the Internet. I wasn’t able to use the link to pull up your images. There is a security feature within the forum that you have to post a couple of times before you can post your pictures. So how about replying back to me on this post.
You definitely have symptoms that would fit with an Eagle Syndrome situation. I had much of the same with the shoulder blade, neck and jaw… The shoulder was the spinal accessory nerve, my neck was constantly in a spasm as well as pronounced TMJ on that side.
We will chime in on your images as soon as you can get those on here, and I’m certain you will get very good advice from multiple members of the forum.
Thank you, Henrik!! You’re amazing!!
@AdamLeavesEden based on the 3D images, @Henrik posted for you, your right styloid is quite thick & elongated & looks like it’s broken. The longer section which has broken off is dislocated posteriorly (toward the back of your neck) from the main styloid (attached to your skull base). The left styloid is also significantly elongated & has an “elbow” which angles the styloid inward. If I could download your images, I’d annotate them to show you what I’m talking about, but I can’t download them the way they’re posted.
You have lost the curve in your cervical spine which can also cause symptoms because that puts the spine out of balance. There are some simple exercises you can do to help restore the cervical lordotic curve. @vdm has posted quite a number of YouTube & other PT links to help restore muscle & cervical balance here:
Thank you @Leah @Henrik @Isaiah_40_31 for all your input. I appreciate all your observations and suggestions. So, it looks like this is something worth pursuing as a possible diagnosis. I was also especially puzzled by that odd looking right styloid. As for the left, it looks like it’s touching an artery in the 3D model. What would that artery be? What symptoms would it cause?
Now, here’s a problem. I’m absolutely terrible at advocating for myself. I’ve had certain reservations about my care in the past but I’m not great at speaking up. I do have a referral to a neurologist currently in the works. I’d be seeing him in March or so. Is that something I should bring up then? What should I say specifically to be taken seriously? Or, if he’s not the kind of specialist I need to see, what should I tell my PCP? Who should I be referred to? Thanks everyone for your help.
Hi! Looking at your scans I’d say definitely worth pursuing…the artery your left styloid looks like is touching is the Internal Carotid Artery, but it could just be the way the scan’s showing it from that angle. It would also be interesting to get an opinion on your hyoid bone, as the processes on that look quite long and also close to the ICA.
It’s hard to put your case forward to doctors, they can be quite intimidating! We suggest that members try printing off a couple of research papers which mention symptoms like yours to take with you & show your doctor.
There are some links in the Newbies Guide Section in the Common Symptoms & possible explanations section:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
And also in the Research Papers section.
There’s also info about advocating for yourself here:
Latest Patient Self Advocacy topics - Living with Eagle
And try to get a referral to one of the doctors on our list who have experience with ES; Dr Samji is very knowledgeable, and Dr Osbourne, there are quite a few others in CA too, here’s a link:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
Otherwise consider taking someone with your for support?