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;
glaucoma;
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.
