What the Heck Do I Do Now?

Despite the reason that we’re all here, I hope everyone is doing as well as can be expected.
I have been lurking around this forum for months, but only just signed up a few days ago, because I can no longer continue to advocate for myself without additional resources, like the ones found here in the members and in all the data shared via radiographic images, personal medical reports, and peer-reviewed articles. I’ve gotten myself to this point, but in order to move forward I need to share my story with the community in order to figure out next steps.

I’ll start by sharing that I have always been somewhat peculiar, as far as my health is concerned. I was barely in my teens when I had already been diagnosed with fibromyalgia, chronic fatigue syndrome and Raynaud’s phenomenon. I was fitted for my first pair of glasses before I turned 3, had my tonsils removed at 5, and suffered from painful ear infections including my annual bout with swimmer’s ear well into my teens. The mysterious case of enlarged glands under both arms and groin disrupted the summer vacation to Cape Cod when I was 14 or so. And a raging case of mono kept me in my college infirmary with an enlarged liver and spleen for close to 2 weeks. It also kept me from attending my brother’s wedding. I was told by the college physician that I was THE worst case of mono she had seen in her 30 years of practice. Not too long after college graduation, I had my first episode of periodic paralysis. In that moment, I quickly laid down, because I felt like my battery was about to die, the same way the little battery icon on your phone turns red to notify you that your phone is about to die. When this happens to me, I am unable to move any part of my body. I remain conscious and can hear and see everything. I just can’t move until after a few moments (or minutes, maybe 10?) when power is restored and my systems begin to come back online. My muscles begin twitching and shaking for a few additional moments, and then I have enough steam to get myself up and onto the sofa or to bed. It happens far less frequently now than it did when I was in my 20s and 30s.

Having shared that history brings me to my present situation and the symptoms that made getting to my diagnosis of Eagle syndrome such a major slog. I struggle with balance and have since about 2012 or so. That struggle led me to stop driving on the expressway as well as at night. When I drive faster than 40-45 mph, I feel like my car is leaning to the left like I’m on an incline, and so I lean right towards the passenger side of the car to counterbalance myself. Strange, right? I’ve taken a couple of pretty good falls including one in a parking lot while trying to walk from my car to the sidewalk. I now park in handicap, because of that incident. In 2018, I was sent to an ENT, who diagnosed laryngospasm. Every time I opened my mouth to speak, I sounded like Susan Collins, the Senator from Maine. The spasms eventually resolved on their own. Between 2018 and 2020, I experienced a precipitous decline in my overall health: an overwhelming sense of depression, bone-crushing fatigue, and brain fog. I was referred to several different doctors to treat drug-resistant depression and to finally diagnose the cause of the periodic paralysis along with the vestibular disturbances.

Around March 2021, I wrote to my doctor about a painful lump on my left mastoid that I noticed when I ran my hand through my hair. The lump and pain subsided over a matter of days and then was followed by an earache. I hadn’t had an earache since my teens, so this was odd to me to have an earache out of the blue at 54. My doctor prescribed drops that failed to offer any relief, so he prescribed a second medication that did nothing more than the first. I was referred to the local medical center’s ENT department where I saw multiple doctors and had a variety of tests including videonystagmography. No one could figure out where the ear pain was coming from or why I feel like the planet is tilted to the left.

The unilateral headache began the following year. Along with it came pain where my jaw just meets my left ear and what felt like pressure in my left eye. Suddenly bending forward, laughing, sneezing, clearing my throat, and doing just about anything akin to the Valsalva maneuver causes extreme pain in my left eye and the top of my head. That sent me rushing to my amazing team of eye doctors, who quickly jumped into action and began testing me for everything they could think of. In addition to a fluorescein angiogram to examine my retina, the team ordered chest x-rays to rule out sarcoidosis and ocular staining to rule out Sjogren’s due to symptoms of dry eye and mouth. I suddenly had a cascade of diagnoses including glaucoma, followed by cataracts, then corneal dystrophy, and finally retinal vasculitis. The team said I have raging inflammation somewhere in my body that is affecting the health of my eyes, the left eye in particular.

I’ll try to bring this post home, because I know it’s long. In the last year, I have seen multiple neurologists, otolaryngologists, a brain surgeon, an oncologist, a maxillofacial pain specialist, an oral surgeon, a dermatologist, gastroenterologist, and last but not least, a cardiologist. The kitchen-sink-list of my symptoms follows:

tremors in hands and feet, particularly the left foot;
erythromelalgia, both feet;
occasional edema, both feet, more so left foot;
nerve pain progressing from both feet through legs and occasionally the torso;
an unexplained and sudden GI bleed;
ear pain, left side;
jaw or salivary gland pain, left side upon turning head;
headache, left side upon Valsalva maneuver;
eye pain, left side upon Valsalva maneuver;
corneal dystrophy;
dry eye and mouth;
retinal vasculitis;
inappropriate sinus tachycardia;
exercise intolerance/post-exertional malaise;
heat intolerance;
sleep disturbance;
brain fog;
extreme fatigue and weakness;
sensitivity to light;
vestibular issues;
difficulty swallowing, choking on occasion; and
the sense that something is poking me in my neck.

Aside from lab work including genetic testing for a host of autoimmune disorders, I have had 3 leg biopsies, a lip biopsy, and an arm biopsy. I have had multiple nerve conduction studies, a couple of MRIs, CTs, ultrasounds including carotid, 2 tilt table tests, a Holter monitor, and stress test. I am currently taking corlanor and aspirin for the cardiovascular symptoms, duloxetine and gabapentin for the neurological symptoms, modafinil for the cognitive issues, and latanoprost for my eyes.

In February, I went to the dentist for a cleaning. When the hygienist completed the cleaning, a dentist walked into the room and said, after looking at my medical record, that he thought I have Eagle syndrome. Dentists rotate in the clinic I visit for cleanings, so I’d never seen him before, but he still managed to do what none of the specialists were able to do, see the big picture. I was sent back to the maxillofacial pain clinic for a panoramic x-ray that showed bilateral elongated and calcified stylohyoid ligaments. Because no one here knows what Eagle syndrome is, apart from one dentist, I didn’t have a CT to confirm his diagnosis until May, and have thus far received no treatment. So, like most members here, I now understand that I have to look outside of network for a physician who specializes in the diagnosis and treatment of Eagle syndrome.

That is my story. Thank you for taking the time to read it and provide any helpful feedback that you can think of. I should add that I have read a tome of articles about ES on the forum and know there is only a limited list of providers in New York State. Also, given the limited testing and imaging that I have had, I really can’t say what form of ES I’m looking at, but I know it is the cause of my neurological as well as my cardiovascular symptoms.

Again, thank you.


Good morning and welcome to the forum,
What an incredible amount of suffering you have been through. I am fairly new here and know you will be hearing from many others. Do you have a copy of the panoramic x-ray? If not and can get, you can look at it yourself which I found extremely helpful. There is free software Radiant which is a viewer for medical images. I’ve now viewed my panoramic x-ray, CT w and wo contrast, and MRI’s. Members here can chime in on what they see.

At a minimum, seems Eagles can explain a number of your issues. There are docs in NYC and nearby who can help. Type in list of docs in the search and you can see them by state. Dr. Costantino in Manhattan/White Plains would be a good start.

Suspect you’ve landed on a big piece of your puzzle.


Welcome to the forum! So sorry that you’ve been having health issues for so long, but glad that your dentist spotted this on the x-ray! I can’t say that all your symptoms could be attributed to ES; the leg & feet symptoms particularly, although we have had members with similar issues. I’m sure you’ve read the info about symptoms & possible causes, so are aware of the common ones. You mention having had a CT- was that with contrast? And did the carotid ultrasound show anything? Unfortunately if you get symptoms when in certain positions & CT etc aren’t dynamic it doesn’t always show if there is any vascular involvement.
I’m curious about the Sjogrens Syndrome testing that you had- I presume that it was negative as you didn’t mention being diagnosed with it? I have dry eyes & mouth which started when the ES symptoms ramped up, (& Raynauds which can be linked), & quite a few members have mentioned these as well. My blood tests didn’t show anything, & I decided that the lip biopsy wasn’t worth the pain, so have lived with it. SjS can cause fatigue too, Ben’s Friends do have a site for that as well if you’re interested, & Fibro.
@Leah has given you good advice; with the software and with the doctor, he would be a good starting point. Unfortunately many members have had to travel to see doctors, and if this is difficult some will do phone consults initially, or view your CT first then contact you (as I believe Dr Cognetti does in PA). You can search the past discussions for info on different doctors…
I hope that you can get someone to help you soon, best wishes!

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Hello Leah,

Thanks so much for your kind words of support! They truly are meaningful. To answer your question, I do have radiographs that I was taking a closer look at last night. One of the things this forum has already taught me is to really study the x-rays, MRIs, and CTs rather than simply taking the word of a radiologist or medical provider at face value. One of the things I discovered from following that important advice is that the panoramic x-ray that I thought was from this year was actually taken in 2019 and clearly indicates the presence of elongated and calcified stylohyoid ligaments. And yet, no one said anything to me.

I have spent the morning contacting my neuro-optometrist (who out of all my doctors I trust the most) as well as Dr. Costantino’s office to assure that he will accept me as a new ES patient and accept my insurance. Having to find a provider out-of-network, then have my pcp make a referral, and then wait for insurance to authorize care is really frustrating. But I am glad to finally feel like there is tangible hope. While I wait for that process to work itself out, I have asked my trusted eye doctor to look at the CT and give me her assessment. I’m not sure that my left eye is supposed to look like a big balloon compared to my right eye. I would also like to know her overall thoughts about what she sees.

I am going to post my x-rays and other radiographs in a bit. I struggled with the coronal and sagittal views from the recent CT, but perhaps someone on the forum can lend me a hand with them. I don’t have all of the images, but started making requests this morning to receive copies.

Thanks again for the kind words, Leah.


The insurance issues must be so frustrating, I hope you get this resolved! :pray:

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Hello, Jules! Thank you for the welcome! This diagnosis has been a long time coming, so I am grateful to the dentist, Dr. Ali. As I mentioned, the dentists in the clinic rotate, so patients never know who they might see. As I shared in a previous reply, it looks like an x-ray caught the ES in 2019, but no one thought anything of it until now. If not for Dr. Ali, I’d still be in the dark. But yes, I have taken a look at the symptoms that others on this forum have mentioned and see that tremors are not completely uncommon. I also recently read an article that identified cranial nerve palsy as being characteristic of ES. One of the main takeaways from learning what I have thus far is that the symptoms of ES are incredibly vast depending upon which structures are affected. Because there is a family history of autoimmune disease and because one of my brother’s had cancer of the throat - mercifully, he is now free of the disease - I had a number of tests to rule out any such diagnoses. Along with cancer and Sjogren’s, MS, Lyme, lupus, Hashimoto’s, Behcet’s, sarcoidosis, RA, Fabry’s, and a few other autoimmune diseases were ruled out. Instead, the symptoms I am experiencing and along with subsequent tests point to dysautonomia. As for the dry eye and mouth, I’m thinking inflammation caused by ES is what’s disrupting the lacrimal glands’ ability to properly function and produce tears, and the same with salivary glands. But those are the least of my concerns compared to everything else. I have already reached out to Dr. Costantino’s office and hope that I can be seen by him without too much red tape. Travel is not so much an issue for me as is the question of my insurance. Many thanks for the welcome and kind wishes, Jules!


If not for the insurance, I would travel to California where I could stay with an aunt and uncle. I used to live in Fremont, not far from Dr. Samji, so I know the area. I also have a niece in med school at U Penn, so I could go and stay with her. But I know that I am not alone in being hindered by the question of whether my insurance is portable.

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@CoHDa - Some of your symptoms sound like those for ICA compression. When you noted the disparity in your eyes, I immediately wondered if you might have Horner’s Syndrome though your description made it unclear if your left eyeball itself is enlarged or if it’s your pupil. I think w/ Horner’s it’s a difference in pupil size along w/ other symptoms, but it’s a very one-sided issue & is linked to ICA compression.

Here’s info that @KoolDude posted for one of our members that might be helpful for you. This post is on Day 16 of a pretty long thread so if you don’t want to read the entire thing, you can jump to that point.

Left Internal Carotid Artery (ICA) and Styloid Contact : I have found that your elongated Styloid is rubbing against your ICA and could potentially be compressing/irritating it when you look down. Typically, Carotid compression/irritation mainly manifests as (Syncope, presyncope, vision changes, dimmed vision, slurred speech, difficulty speaking, lower cranial nerve dysfunction. Horner’s syndrome, ptosis (drooping eyelid), constriction of the pupil, loss of sweating over the ipsilateral face, upper/lower extremity paresthesia. Weakness or paralysis of face, arm or leg, dizziness, unsteadiness, or falls.). So this needs to be investigated with dynamic angiogram specially in flexion position (bending the neck down) to see if it is compressing it. I am not a doctor, but based on literature, it could potentially cause stroke as well so this needs an urgent addressing.

Link for the full thread: Buzz. My case history, findings and radiology images - #47 by KoolDude

Dr. Samji did my ES surgeries. I thought he was great but some of our members who’ve seen him more recently haven’t had as good outcomes. I’m not sure if he’s changed how he’s doing surgery or if my case was less complicated. Obviously Dr. Cognetti is in Philly, & he would be another good option for you. He will do your initial consult via phone or video call which would save you having to travel.

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@Isaiah_40_31 I appreciate the thoughtful feedback. One eye is not enlarged (a la Bill the Cat. Ack!) and my pupils are not asymmetrical. I should clarify that I expressed to my eye doctor concern about the fact that, if you look at the axial view of my CT, my left eye appears large and perfectly round whereas my right eye does not. It actually looks far less defined and almost diffuse. I might have mentioned when you and I chatted earlier this week that it was a struggle just to get a CT with contrast, because the medical community here in Rochester is unfamiliar with Eagle syndrome. I pleaded for a CBCT and was refused. When the “basic” CT was finally ordered, and I asked the technician if I could turn my head for the scan, I was told no. So, even though the CT shows no evidence of compression, it does not provide an accurate picture of what is going on, because I believe compression is triggered by the movement and position of my head. An ultrasound showed what was described as a thin fluttering band in the bulb, which is located in the ICA. My cardiologist was waiting for a thorough assessment of ES to determine if one is related to the other. That will have to wait until I can see Dr. Costantino. In the meantime, I was given a prescription for 81 mg of aspirin that is to be taken daily. So, in a round about way, I’m trying to say I suspect that I might have stylocarotid artery syndrome in some form.

I’ll definitely check out the recommended thread. Thank you for taking the time to point me in the right direction.


I think the Trigeminal Nerve has some function with the lacrimal glands so I wondered otherwise with myself if that was affecting them, as I have trigeminal neuralgia…