My story and the start of my journey for diagnosis pursuit

Thank you so much for letting me join.

My story…
I’ve been disabled since 2020 from my career as an RN. I’ve battled so many symptoms that fit for rheumatoid, MS, EDS, Lupus and others. Specialists will feel confident it’s one of these but then labs consistently come back normal. I’ve seen so many specialists and different providers trying to find answers. Some 3 & 5 hours away. I was diagnosed last fall with mixed connective tissue disease, I’m pretty sure it was because my rheumatologist was tired of me nagging for answers and he didn’t have any. Though my symptoms don’t really line up, I’ve had a couple providers diagnose me with fibromyalgia because sometimes it’s a catch all diagnosis providers will use for people complaining of chronic pain with no clear reason.

I have TMJ prosthetics due to arthritis and had a perfectly straight bite and facial symmetry since my surgery about 12 years ago (better have, after two rounds of braces and two different jaw surgeries). Over the past several years I started having some neck pain. The neck pain has progressed over the years. My swallowing started being overly exaggerated and very loud with liquids or soft/liquid foods like watermelon. I’ve had it pointed out to me on several occasions and it was quite embarrassing, but I can’t do anything to change it. I hear clicking, squeaking, snapping, crunching and grinding in my neck. MRI’s show some issues of my C-spine that typically wouldn’t cause the pain and issues I’ve struggled with. I’ve had shoulder and elbow pain, radiculopathy pain and neuropathy pain in arms and hands, but EMG studies come back normal. However, the last one she mentioned issues with my accessory nerve which didn’t make sense to her so she said it was pretty much normal EMG. I have left arm and hand paresthesia, left jaw has shifted significantly to the left, my bite is completely out of alignment now. It’s as though the left side of my face is being squeezed together from top to bottom at the same time. My left shoulder is rising up to my jaw along with a winged scapula. I have muscle contraction with spasms on the left, my ear feels like it’s full and muffled all the time but hearing tests come back normal. I get fluid stuck in my left ear frequently due to the abnormal mechanics of my ear canal and get horrific ear infections to the point the ear canal swells completely shut. I have an annoying post nasal drip and sinus issues but ENT says everything is pretty normal. I have Trigeminal neuralgia at times when yawning, eating or brushing my teeth. There’s some kind of neurological disconnect with fine motor movements and weakness in my hands (though this may be arthritic related). I fight lightheadedness all the time, tinnitus, ptosis of my left eye lid to the point I need a brow and lid lift due to vision field obstructions. I battle chronic fatigue, gastrointestinal issues, I feel like I have a large ball in my throat all the time with a scratchy throat, anxiety and periodic depression and the list goes on and on. Yet, doctors look at me as though I’m making things up or being overly dramatic because none of it has made any sense. I found myself minimizing things, feeling defeated and starting to believe I was crazy, imagining stuff and questioning if it was all just stress related to my anxiety and depression. I recently had a discectomy with ADR in my c-spine with hopes it would fix it all, but it didn’t.

Last summer I drove five hours one way to see a Maxillofacial surgeon about my TMJ prosthetics thinking they came undone or something was wrong with them and they were the source of my issues. While working on a insurance claim for services this surgeon provided I was reviewing my records and found on my CBCT and panaromic views it’s noted as incidental finding of: ossification of stylohyoid ligament noted in the superior and inferior attachments. The unfortunate thing is the Maxillofacial surgeon never even mentioned these incidental findings to me and from what I’ve read they’re the ones that typically discover this syndrome. Either way it was complete negligence on his part that caused me another year of appointments, specialists and unsuccessful treatments because he didn’t properly inform me of these findings. As I’ve started researching this condition I see pictures of faces with the exact same malformations I’ve been having. I’m currently waiting to see my neurologist and PCP to discuss these findings.

Through my research it appears I’ve done all the suggested management and treatment strategies with acupuncture, PT, NSAIDS, massage therapy and even large volumes of Botox injected with no successful relief. So I’m assuming surgery will be my next option.

My questions to this group…
Who (what type of specialist) diagnosed you or did you pursue to manage your treatment and care with this syndrome?

Those that have had surgery did you go somewhere special or stay local to where you live? As I understand it’s a pretty significant surgery and I definitely want to seek surgeons that are familiar with this procedure.

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First let me say welcome and I’m so sorry that you have been through so much with no resolution. I think you will find that you are in good company here. My journey started in 2019 and I am finally scheduled for surgery at the end of July. I was seeing Dr. Hauser in Florida for prolotherapy…it helped for some things but was not helpful for my Eagle’s symptoms) who ordered a CT venogram of the head and neck which I had done at Radiology Regional in Florida. Either your neurologist or PCP could order this. I just had mine done in neutral position but I believe others on this site have had it done in neutral as well as flexion and or head turning. It provides a 3-D image of the styloids to be able to see the length and width. I have the symptom profile of vascular Eagle’s so following the results of the CTV I contacted a local neurosurgeon who ordered an IR angiogram with manometry to determine whether or not the internal jugular vein stenosis was causing intracranial venous congestion. That was performed at UCSF by a neuro interventional radiologist. Based on your symptoms I’m not sure whether or not you would need that. Hopefully not. Once that was confirmed I started consulting surgeons whose names I found on the resource list on this site. Since this is still an emerging area there isn’t yet a best practice surgical plan and each doctor I spoke with proposed a slightly different plan. I ended up choosing Dr. Nakaji in Phoenix and now I’m just waiting for my surgical date to arrive.

I encourage you to take a look at the doctor list, use the search tool to put in your symptoms and read what other people have posted about it, and take a look at the research section with links to loads of publications.

Keep us posted on your progress!


Hi & welcome to the site!
What a long fight you’ve had to get to the root of alot of your symptoms, well done for not giving up!
If you haven’t already looked at the info about symptoms in the Newbies Guide Section it’s worth a look to compare yours, here’s a link:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
You could ask for a referral to one of the doctors on our list who are familiar with ES:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
There are several doctors in Florida with experience, you can use the search function on the site to look up any discussions about them. Others opt to travel further afield, for example lots of members with bilateral elongated styloids see Dr Hackman in NC, as he removes both sides at the same surgery- most doctors only remove one side at a time, as there can be significant swelling, but he’s done lots of these surgeries successfully. Other members with significant vascular compression or C1 involvement opt for doctors more experienced in those areas.
Very frustrating that the styloids/ calcified ligaments were seen on a scan already and nobody connected the dots, unfortunately not uncommon…given that you do have some symptoms of vascular ES- lightheadedness, muffled ears- it might be worth trying to get a CT with contrast as it could be that you have some jugular compression. I’m not sure with the US system if your PCP could refer you for a CT, otherwise perhaps your neurologist could, and I would think it’s worth making an appointment with one of the doctors on the list too if you can afford to do that.
Best wishes, I hope that you get a formal diagnosis & can get treatment soon!

I am incredibly grateful for this group!!

The information on the additional tests for vascular involvement is very helpful! I actually have a tilt table test with a cardiologist for my episodes of lightheadedness/pre-syncope because they’ve gotten so bad but heart monitoring doesn’t show any significance.

Having discovered this, I now look back at all the unusual and unexplained symptoms and findings and see how it all has been related. They randomly noted I had mastoiditis on a previous CT scan but I had no symptoms of infection whatsoever. Which typically is a very serious infection. I was diagnosed with TIA twice and I knew it wasn’t that. The first was for facial drooping on one side which resolved, but my facial expressions continue to be very different one side compared to the other and there was never any findings on a brain CT. The second TIA was related to my left arm & hand paresthesia which has been chronic for a few years now.

about 12 years ago, I was having a lot of dizziness and pre-syncope episodes (I still have, just not as frequently and quit talking about them) I had all the heart tests and the tilt table, stress tests, etc… Heart doctor said didn’t find anything, Neurologist said it wasn’t in his field … I now believe it was the styloids and their growth. My current PCP said she can absolutely see why I quit telling Docs about symptoms that clearly point to Eagles when I’ve been made to feel hypochondriac… Nothing has felt better than to finally be validated!


@aholtswarth - I’m sorry for all you’ve been through but am very glad you’ve landed here where you’ll get good information, support & hopefully find the best doctor to help you.

The type of doctor who most often diagnoses ES is either a dentist or ENT. There are other specialties that know about it as well, but many of our members have had their dentists tell them they had elongated styloids after having a panoramic x-ray or CBCT. I was diagnosed by an ENT after I found a hard lump under my jaw & was referred by my OBGYN at my annual visit w/ her.

Since you’ve had some symptoms that were diagnosed as TIA but not justified via a follow-up scan or monitoring, I guess you might have internal carotid artery irritation or compression by your styloid. As @Chrickychricky noted, getting a dynamic angio/venogram can help clarify what is being compressed by your styloid(s) as having this done w/ the head in neutral doesn’t always show compression even if it’s present. TIA type symptoms caused by irritation to your ICA may not show up on a scan or via monitoring in the manner that a true TIA does.

The facial nerve is another nerve often affected by elongated styloids. It’s the nerve of facial expression so I’m guessing w/ the change in appearance of half your face that your facial nerve may be irritated or injured due to your elongated styloid on that side.

There is a series of YouTube videos called Two Minute Neuroscience that has a two minute video for each of the 12 cranial nerves. The nerves most often affected by ES are the facial, trigeminal, glossopharyngeal, hypoglossal, accessory, vagus & possibly the vestibulocochlear. You will likely find the videos quite interesting if you choose to watch them.

Here’s a link to get you started:

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