I found this interesting article about a rare case of ES involving facial palsy. When my symptoms started over 6 years ago for awhile I had what felt like Bell’s palsy but without drooping. I constantly felt strange weakness on the left side of my face/jaw but when I looked in the mirror my face looked normal. I later noticed that I developed a small synkenesis in my left cheek and when I blink my cheek pulls up. Anyone else with similar neurological symptoms?
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Thank you for posting this link, @Elena! The more information we get about rare symptoms, the more ammo our members have when fighting their cases especially when unusual symptoms are present.
The treatment for Bell’s Palsy is an antiviral & steroids. If his palsy was truly caused by his styloids (which is most likely), the steroids would have been the agent that relieved his symptoms.
I CANNOT believe this guy refused surgery. His styloids are ENORMOUS!! He needs to find our forum & get some support so he will consider surgery!! 
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From the article’s CT images, it’s clear that the person has other neck/skull anatomic variations. It’s possible the thick calcifications have been holding his head in less affected position to avoid damaging vital arteries.
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I honestly can’t believe he refused surgery too. Either his symptoms weren’t severe enough or he was terrified of his throat being cut open. Where I stand right now I’d even agree to a head transplant surgery
If that’s ok I want to post another link that a member of a Facebook ES group shared today. It’s a testimony of a lady who on top of other symptoms lost her voice. A deeply moving video that a lot of us can resonate with.
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You think his styloids/calcifications have nothing to do with the symptoms he was experiencing?
Thank you for posting this video, @Elena. It’s actually been posted on our forum before, but it was awhile ago so I just watched it again. Nora’s talk is very inspirational.
I emailed with Nora some years ago to encourage her when I was early in my ES journey. I had no understanding of how much some people go through to get to some point of recovery. She showed me I had much to learn. She is a very strong woman & her story is well worth listening to.
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It’s hard to say. The more I learn about the human body (not only the Eagle’s syndrome; if you search for my other posts, you’ll find a lot of anatomy-related posts), the more I realise how interconnected various structures are and how many possibilities exist for the “Butterfly effect” (or the snowball effect, whichever you may prefer). Especially with age, it’s not impossible that a minor injury or anatomical variation start causing myriads of seemingly unrelated symptoms (indirectly).
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Thank you, Wendy, it’s wonderful that you got to correspond with Nora, she’s definitely a very strong person and very courageous. I’m grateful for people like her trying to raise awareness about rare diseases and all the gaslighting and mistreatment associated with them. I hope to be a light at the end of the tunnel for other people some day 
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This is a very interesting point you are making. I’ve been trying to solve the puzzle myself for over 6 years. Still don’t know what specifically triggered my issues that cascaded into a myriad of seemingly unrelated symptoms like you’re saying. Our body is still so understudied and underinvestigated. I’m actually thinking about leaving my body for the scientific community to study after I pass. I wonder if there’s a lack of consensus due to lack of cadavers for direct hands on research as opposed to only surgical investigations.
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Interesting article, thank you! I did just move it into the research papers category, hope you don’t mind!
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The other day I was contemplating about the same - it would be cool if someone in the future tried to figure out what is happening with my body now.
But then the other thought crossed my mind… Perhaps nobody cares too much about it when doing autopsies and dissecting cadavers for scientific purposes, the same way few doctors really care about finding the root cause(s) of the illness(es) while we are still alive… 
No wonder that such situation allows alternative medicine to flourish, from total quacks like magnetic or crystal healers to more educated chiropractors.
Saying that, I’m leaning towards the idea that skeletomuscular problems might often be one of the primary but overlooked causes of apparently unrelated symptoms by either causing some disturbances in blood flow (leading to insufficient oxygen/nutrients delivery to various organs), spinal cord/nerve irritation, or simply holding muscles in spasm and through some feedback-like mechanism, which I don’t know about, overloading the sensory system. Perhaps it’s something simple, like muscles constantly sending intense electrochemical signal to the brain demanding immediate action/reaction to keep the body in balance, eventually overloading the brain and putting the whole body into some sort of fight-or-flight state without any real need.
My guess is that eventually the body has enough of wear-and-tear injuries to be unable to perform repair at the rate the injury is happening, and the body starts demonstrating all sorts of mysterious symptoms.
Perhaps similarly to the cancerous cells (sorry, my knowledge is very limited here), when they start multiplying at rate higher than the body’s ability to fight off, and then quickly overload the body’s defence mechanism in late stages.
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Absolutely, the more information is spread about all the ways ES can manifest the better. Thank you
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Unfortunately I tend to agree with you on the lack of desire to research and I suspect it not for very noble reasons. For example in the case of cancer there’s is so much money involved in chemotherapy/radiation and all other concomitant treatments that it’s not in certain people with power interests to ever discover the cure for it. As for ES and similar rare disorders there’s probably not enough incentive to push for more research simply due to the low number of patients compared to let’s say patients with diabetes or cancer again.
I have given a lot of thought to the constant “fight or flight” state affecting the body’s ability to heal at some point. I have exhausted so many avenues of treatments including snake oil holistic stuff, TMS, trigger point therapy etc etc. I even went to a Neurologic Wellness Institute in Chicago where for outrageous rates they put vibrating tools in my ear and shook my leg in a weird way That is how desperate for a relief I have been. I looked into stress extensively as this is how my symptoms started perpetuated by a horrendous amount of 24/7 debilitating stress and anxiety. I have since come to a conclusion that psychological aspect of it is only a small part and can’t be used as an excuse in diagnosing patients. Once structural damage is done fixing emotions won’t help. Finding a specialist experienced in differential diagnosis as opposed to throwing the only diagnosis they know at you is the utmost challenge and in almost 7 years of searching unfortunately I haven’t found anyone knowledgeable enough.
That’s why I like approach used in my home country. While universal healthcare is by far not perfect and has tons of flaws the fact that you can be admitted to the hospital without having to wait for months and multiple different specialists in different fields of medicine will work together on figuring out the issue is something I wish we had available in the US.
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My best medicine so far was general anesthesia. I had it twice, the first time in 2021, the second one was just a year ago.
Both times I had one of the best sleeps in my life. And each time I had lots of symptoms resolved after waking up, until something clicked in my neck putting certain neck muscles in spasm and re-starting the symptoms again.
I am slowly learning how to disengage everything I can think of in the neck, sometimes it’s easier, sometimes it’s harder.
So far I have found these things that I think of as if they were typical for people like me (obviously every one of us is more or less anatomically different, but that’s just my guess that people with Eagle’s syndrome, IJV compression, straight neck etc. might have more in common compared to healthy people):
- Carrying a backpack affects shoulder muscles
- sitting all the time “straight” affects back muscles, psoas, quads and hamstrings
- Using mobile phone, computer, esp.laptop (in general) affects pectoralis muscles
- Forcefully trying to keep straight posture and avoid slouching affects erector muscles
- using a smartphone while walking or carrying a coffee cup with elbow bent, unilaterally or bilaterally affects pectoralis, deltoid, and biceps/triceps muscles, not counting forearm/wrist muscles, causing significantly uneven (lever effect) centre of gravity and thus unevenly engaging abdominal/back muscles to compensate for it
- most recent thing… Bulging things in the pockets affect proprioception of leg muscles and also may make it harder to bend the leg at the hip (e.g. a large phone in the pocket may start poking into the pelvis bones when the hip is at certain angle, and the body learns to rely more on pelvic movement for that leg than movement of the hip)
- Dozens of other small things, like weak neck flexors or extensors may cause overuse of scalene and lev.scapula muscles, and some of them may restrict blood flow to/from the brain.
I guess, during the anesthesia the body is totally relaxed (they inject a lot of muscle relaxants too), plus the neck is stretched/rotated/extended during the surgery forcefully stretching the muscles around, plus there is a lot of movement during the transfer from the operating table to the hospital bed possibly stretching out/mobilizing a lot of muscles too, and finally intubation requires certain position of the jaw which, I speculate, again stretches out certain muscles that may be occupying that very tight space near the skull base when they are hypertrophied (e.g. digastric).
I am too just a person seeking for answers and it seems the deeper you go the more trees in the woods. Perhaps doctors simply cannot learn everything we know, and “anxiety”, “depression”, “migraines” are good-enough for them to start symptomatic treatment that may work for 80% of the patients. The remaining twenty percent, unfortunately, is less lucky.
It seems so. It’s both due to the politics (of grants at universities) and monies involved. If my memory serves me well, mRNA-base vaccine research was deemed to be doomed and had little interest/progress until pandemic started.
This one worked quite well for me, but more in some educational way. The therapist would stab the needle and tell me “ok, this is this muscle, now I will push another needle nearby into that muscle”. It gave me some muscle-brain feedback so that I started feeling certain muscles and could tell them apart/activate them consciously. Before, everything was just “some muscles here” and my understanding of the layers of muscles was, politely speaking, very primitive.
How about Mayo clinics? Aren’t they something like an integrated centre of medicine with all the specialists under one roof? I’m in Canada so we don’t have much choice as most of the healthcare is “public” with very few exceptions (and very expensive exceptions, usually not covered by private health insurance, i.e close to a thousand bucks out of pocket for a consultation).
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Was the global anesthesia a separate treatment or part of a surgical intervention? It’s an interesting observation of yours in regards to the symptom relief. I’ve only been under general anesthesia once during a stomach surgery and it was by far not a pleasant experience. But have to take into account it being at a public hospital in Russian with no comfort medication post op and all the other “perks”.
I have given Mayo a thought but from what I have read about other’s experiences especially in regards to diagnosis of very rare diseases Mayo isn’t of much help.
I would like to read your story or some of your posts but your profiled is hidden, do I just search with your name as a key word? Thank you for your detailed comprehensive answers, I appreciate them.
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Both times it was styloidectomies, the first round gave me very little relief (mostly it took off the compression from one of the carotid arteries and reduced certain sharp pain in the neck), the second was bilateral (which finally took my headaches away).
I guess you should be able to find all my public posts using the handle @vdm:
https://forum.livingwitheagle.org/search?q=@vdm
Though you’ll likely find that over the time, my opinion of many things kept changing as soon as I learn something that makes me rethink and reevaluate my beliefs. So today I am quite convinced that Eagle’s syndrome is rarely an isolated condition but has some comorbidities, some of them caused/causing muscular issues, and very related to traumas/posture/lifestyle/injuries.
Tomorrow I might change my opinion radically if someone discovers a gene causing hEDS and shows that significant numbers of hEDS’ers suffer from calcifications with or without injuries.
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I’d be grateful if a surgery took my headaches away, this is one of my most debilitating symptoms along with nerve pain. But I understand that’s it’s also a gamble since there’s no definitive diagnostic criteria for ES and the only way to tell is to go in surgically and even then oftentimes it depends on the technique utilized and experience of the doctor.
I’ve been wondering about the genetic component too, my father had headaches, migraines and nerve pain in the face, he also had 2 strokes and died from the second one. My mom told me after the first stroke he had some sort of surgery on his neck supposedly to fix congenital carotid artery abnormality that helped with the nerve pain in his face. I’m not sure how accurate this is but me having similar issues can’t be a coincidence. But again I’ll never know. The search continues…
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Interesting discussion @Elena & @vdm. I agree with your thoughts. One problem leads to another then that leads to yet another & so on until it becomes incredibly difficult to try to figure out how &/or what to treat.
Elena, I had a similar situation w/ my dad. When he was older (early 80s), he began having what he thought was a very strange heart problem (he’d had quadruple bypass surgery in his early 70s), & often felt like he would pass out so would spend time lying on the floor w/ his feet elevated to try to get more blood into his head. I was diagnosed w/ ES during this time, & it didn’t occur to me until after his death from a cerebral aneurism, that he might have had VOO caused by elongated styloids. The aneurism was blamed on the many years he took NSAIDS to control physical pain, but if his IJVs were dramatically compressed, & he had IH from that, the IH &/or vascular compression could have been sufficient to result in an aneurism. He was an OBGYN & spent nearly 50 years doing long surgeries plus delivering babies thus probably thousands of hours of looking down. He had to have multiple surgeries on his hands to release “trigger fingers” which developed from doing all those surgeries. I can’t tell you how much I wish I’d known more about vascular ES when he was alive as I would have insisted on him getting a CT scan w/ contrast to look at his styloids, IJVs & C-1.
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What an interesting story about your dad, I too wish you had the opportunity and the knowledge you have now to investigate into your father’s health history and possibly get to the bottom of it. I didn’t realize NSAIDs can cause aneurysm? I’m popping ibuprofen like candy even though it barely does anything. I’m surprised with your dad’s history of Ian they never did any imaging of his head/brain, and possibly discover the aneurysm.
In my father’s case cause was probably different as he led a very unhealthy lifestyle prior to his first stroke, he was an alcoholic and a smoker which im sure contributed to the ischemic stroke he had on top of headaches/migraines/high bp. But I still feel there’s a correlation between his symptoms and mine. I’m trying to find out exact name of the surgery he had although it might be difficult due to the amount of time lapsed.
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NSAIDS are a blood thinners so it’s most likely they were blamed because his blood was very thin so when the rupture occurred he lost a lot of blood very quickly. What’s fortunate is it’s a pretty fast way to die. We have no way of knowing if it’s painless though since people who have this happen lapse into a coma soon after symptoms begin.
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