How to tie symptoms to ES?

Hello, I am new here! I wanted to make a post introducing myself and trying to get some guidance on where to go next. I am 34 years old and for the past year have been really, really strugging with severe tension-like headaches, and other crazy symptoms. The facial/head tension NEVER stops, it can get a little better but never lets up completely like a migraine or stress headache usually will. My symptoms resemble TMJ disorders quite closely, so it’s been hard to figure out if it’s just that or something more rare.

It started last december when I noticed ringing/hissing in my ear, I didn’t think much of it, but it kept getting more noticable, then about 2-3 weeks into that I started to get really bad ear pain in both my ears, fullness, and some sound distortion. I thought it was for sure an ear infection so I went to the ENT and they checked my ears and said I had no infection and sent me home.
It then progressed to what felt like a sinus infection, runny nose, sinus pain, face pain. So I went back to the ENT and they did a sinus CT and a scope and found no sinus infection, just a little bit of post nasal drip. Then the pain quickly started spreading to my jaw, which started to become very tight, then one night I opened as wide as I could to “stretch” it a few times and awoke in the middle of the night in absolutely unbearable face pain which felt like my face was being crushed, I went to the ER and they did a brain MRI, which came up clean and sent me home.

After seeing some neurologists who just said I had a migraine or “daily persistent headache”, I knew it was not either of those, so I chalked it up to a TMJ disorder and saw a dentist who made me a mouthguard. After all, I used to wear a sleep apnea device which totally messed my bite up and made my jaw click, but I never did have any jaw pain until all of these symptoms suddenly hit me. One odd thing that I did was try to fix my bite by myself and continually shove my jaw back to the original bite position, it would cause some temporary pain but never lasted, I stopped doing this a month or so before these symptoms hit me. At the time of onset my neck started to get super tight and crackle all the time. After about 5 months of wearing the mouthguard, doing botox, and PT my jaw stopped clicking and popping but I still have tremendous facial pain, along with scalp, neck, jaw, ear pain. I also got an MRI of my TMJ joints and they came back perfectly normal. So I began to consider other possibilies.

I also suddenly got some pretty intense neurological symptoms at the time of the pain onset like severe anxiety, stuck in an adrenaline-filled fight or flight response, muscle twitching, tingly skin (especially in the face), muscle jerking, shallow breathing, brain fog, hearing loss, insomnia, jolting awake at night…and maybe some others I’m missing.

Due to the fact I have a lot of neck pain and even back pain (I’ve had the back pain for longer than the hehadache symptoms) I got a full spine MRI. My thoracic spine showed a few pockets of diverticulum and suspects there MIGHT be some csf leakage somewhere, I am still waiting for the neuroradiologist to investigate further, he is very booked up.

I was also diagnosed with ES by Dr Ryan Osborne in LA after he did a CT w/ contrast and found I had bilateral calcified ligaments with my left one measuring 2.7 cm and my right one is measuring 4.3 CM. He said he doesn’t really know if he can attribute ES to my symptoms but he feels comfortable doing my surgery if I decide to. I also had a CT angiogram of my neck in the hospital and they didn’t mention any sort of vein or artery compression so I am assuming I am not suffering from the vascular type of ES. The styloid resection surgery is crazy expensive and there is no guarantees it will fix anything.

So in summary, I am having trouble tying my symptoms to a cause. I think it could be either a CSF leak, ES, or even both. OR maybe CCI or just a plain anxiety/TMJ/clenching type thing (but my symptoms do seem very severe to be just this, and my tmj joints feel fine and look fine on images, I can even press on them without pain). Most of my jaw pain comes from below my ear and jaw, not from the joint area. Another interesting thing is my face and jaw pain is much worse setting at the computer with my head a bit forward, and is better when I wake up in the morning, so maybe CCI or csf leak related?

So after seeing a bunch of neurologists and doing almost every scan possible. I have narrowed the cause of my symptoms to either a CSF leak, or eagle syndrome, or both. Or CCI, or even just anxiety/tmjd/clenching (but I find this hard to justfiy with the severity of my symptoms, there is no pain coming from the tmj joints themselves, there is no more clicking after using my mouthguard, and the tmj MRI showed no joint issues, only the opening and closing being slightly off center). Maybe Ernest syndrome too from messing with my bite, but not sure how I’d even investigate this.

I am looking for advice on how to proceed from here. Right now I have evidence for ES and a small bit of evidence for a CSF leak (but I am still waiting to get a mylegram to confirm that). I don’t really have hard evidence for anything else yet. My anxiety is so bad that I have trouble being objective about what is caused by my body and what is caused by my anxiety.

Along with MRIs and CTs I also had a lumbar puncture which showed an opening pressure of 21, which is considered normal, they did it in the sitting position though, not lying down.

Here is a complete list of my symptoms. I appreciate any advice! As the “specialists” in my area have been completely useless. One “facial pain specialist” even charged me $2500 out of pocket for some trigeminal nerve blocks that didn’t do a damn thing, and was convinced it was just “upset nerves” that was my issue.

Extreme muscle tension/pain all over my face, head, jaw, temples, and neck
Tinnitius/hissing sounds in my ears (much worse on the side with the more elongated styloid ligament)
Inability to open mouth wide, pain when doing so, it’s not really that hard to eat but after I am done eating my muscles are pretty sore
Very tight neck muscles in the back of my neck
Pain in the occipital area right below the skull
Sinus pressure/pain and nasal congestion
Tingliness in the face
Fatigue
Vertigo (this only happened a few times when the symptoms first started, haven’t really experienced it since)
Parasthesias around my face and body
Muscle twitching in my face and body
Muscle jerking, especially with sleeping
Teeth pain (mainly upper teeth but have had lower teeth pain too)
Ear pain and pain below ear
Pain between the shoulder blades
Anxiety/feeling of doom (I’ve always had some anxiety but never nonstop anxiety like this)
Discomfort/tightness at the base of my tongue (no sharp pains though)
Submandibular glands seem to swell up randomly
Random blood pressure spikes
Sometimes dizziness after lying down
Crackling from my spine when I breathe or move slightly
My pain symptoms seem to be much better when lying down for a while with my bite guard on, and MUCH worse when sitting at my computer.
Sometimes dizziness and high heart rate when standing up from lying position

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Given that you have had a clear MRI for your TMJ I would think that you could rule out TMJD being the cause of your symptoms. If you do have a CSF leak then that could cause your headaches potentially, but wouldn’t explain the facial pain, tingly skin, hearing loss etc which can all be due to ES.
If you read the info about ES symptoms in the Newbies Guide section, you’ll see that your symptoms could be explained by ES; it sounds as if you have either Trigeminal neuralgia or Facial nerve pain, as well as this possibly causing the tingling - there are some informational videos on YouTube which explain these, or you can look up images of where these nerves are & see how that corresponds with your pain, both these nerves are commonly affected by ES.
The vagus nerve is also often irritated by the styloids, & this can cause anxiety & the flight/ fight feelings, if irritated it can cause heart arrhythmias and possibly blood pressure spikes.
The vestibulocochlear nerve if affected can also cause dizziness, and that can be a vascular ES symptom as well, although it sounds as if that’s been ruled out, unless it’s positional.
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
2-Minute Neuroscience: Trigeminal Nerve (Cranial Nerve V) (youtube.com)
ES symptoms worsening with posture is very common too- the head forward position looking at a computer particularly can alter the angle of the styloids enough to worsen the nerves they’re in contact with. It’s definitely worth looking into changing your work station & possibly exercises to correct posture, and isn’t necessarily indicative of CCI. @vdm posted info about it in this discussion :
List of my favourite resources on YouTube to learn anatomy - General - Living with Eagle
Not being able to open your mouth wide could be ES, & pain in the occipital area could be base of skull pain from the styloids, or tight muscles from the pain etc causing the occipital nerve to be painful.
Other members have had sinus issues, muscle jerks have been noted, pain in the shoulders can be accessory nerve related or posture muscle tension…
Some of us also have had issues with the salivary glands, pain, stones, swelling etc Not sure if it is related, I think the Trigeminal nerve may be involved (not sure), & the parotid gland can be affected by the hypoglossal nerve, again I think.
Re the Ernest syndrome, we have had a few members with this, it does cause similar symptoms to ES. Whether that would show on a CT I’m not sure, it could be that the jaw would obscure any calcification there?
There are other doctors on the list who could help you with surgery, from what we gather Dr Osborne doesn’t take some insurances, I don’t know what area you live in but it might be worth getting a second opinion?
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle

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Hello and welcome @kline
Your symptoms sound so similar what a lot of us have been experiencing with ES and vascular ES
Just know your not alone with all this and there is hope to get it figured out
I felt so all alone early on with the wild symptoms , anxiety and muscle twitching to name a few
This websight has been a blessing all in itself to just relate with others going through similar struggles
What I learned about scans is they are only helpful if the one reading them is experienced and knows what to look for
I’ve also had some normal scans that were abnormal when the right person looked at it
Being told it’s all in my head and to just take the anxiety meds “I’ll feel better”
I also have had bad flare ups while at the computer, previous to being diagnosed I thought it was do to being to close to the Wi-Fi router , but all along just related to my poor blood flow while sitting, very much positional
I think in many ways finding the calcification of styloid ligaments is “finding the needle in the hay stack”
This was also my case on the left as well as the styloid being too close to c1 and a focal area of compression on the internal jugular vein.
Dr Hepworth did my surgery last year September and although I am not symptom free quite yet I have had a tremendous reduction of symptoms after the procedure and feel that we are in the right tract as far as treatment goes.
There is a wealth of information here and so many knowledgeable people to help guide you along
I wish you the very best on getting this all figured out
:pray: :heart::call_me_hand:

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That’s kind of funny @mekanX , I had the same thought about my wifi router…I even came up with crazy theories about this being caused by supplements I was taking like B6 or some nootropics (I still stopped taking all my supplements, but without any improvement in my symptoms). I finally gave up on silly theories after a while.

Can I ask how you discovered the jugular compression? I’ve done a neck CT but Dr Osborne did not mention anything about compression, I assume you need an ultrasound for that?

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@mekanX - Dr. Hepworth has scheduled an ultrasound and CT venogram of tye head and neck for next week.

Did he do these tests on you?

He looked at my scans and determined my left styloid, near 6 Cm, is fracturd and laying on my artery. The right is 5 cm and compressings as well. Both styloids appear to have attached to my C1.

He also believes I have a CSF leak at C6/C7 and I also have nutcracker syndrome.

Any information about your journey with Hepworth is so gresrly appreciated.

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I’m so pleased for you that the surgery has helped improve some of your symptoms, it’s good to hear a year on that it’s still the case, and thank you for still sharing your experiences & encouraging others :grinning:

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Hi @mekanx and @kline ! I also thought that something was going on with our wi-fi router causing my issues. We had just changed systems when my symptoms started up Since my surgery I’m pretty sure it wasn’t that :), although I’m not symptom free at this point (but improved). I also had many of the symptoms that you are experiencing.@kline & most of the issues were due to poor blood flow from the IJV compression. I have bilateral vascular Eagle syndrome but have only had surgery on one side so far. Also I noticed differences depending on the position I was in. I could change my posture and make my pusatile tinnitus go away in general. My IJV compression was able to be seen on the CTV of the head & neck.

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Yah I was looking at everything I could think of as well, got rid of Wi-Fi completely but no noticeable difference,

Well initially I believe it was the whooshing that got me the referral to dr Hui , if I remember correctly we did and MRI with contrast that looked at the veins and arteries in the neck and the head,
These were reported as normal with only some genetic variation in anatomy
Then I did the CTV/CTA with contrast that that looks at the veins and arteries, and initially only did a normal lying down in back with a looking down “provocative position”
This showed some compression in the left but the timing of the contrast was not perfect to help “fully illuminate the veins”. We also did another CTV with better timing and turn to the left.
At that point dr Hui recommended doing a venogram of the neck and head to better understand pressure differentials. During the test a catheter is placed in the leg vein and is fed up to the neck area and contrast dye is released so they can watch real time the flow direction, as well as taking pressure readings.
During that test he found severe compression in the styloid c1 area with pressure above the c1 area (don’t remember the numbers of hand) while turning to the left
Better flow straight and better when turning right, but still showing a hourglass shape at styloid.
We tried a few medications to help with the pressure head aches, and symptoms
First diamox with complications, then plaix with amazing initial results, but not symptom free
Things escalated to my feeling the need for intervention surgically as the only choice I had.

No ultrasounds we’re performed up to this time although I thought this would be the easiest and less invasive, they recommended the venogram as the gold standard for this type of thing.

I Saw dr Hepworth in February of 2023 and a new CTV with contrast was ordered
He went over the results with me and walked me through the imaging to show the areas of compression and we discussed what he can do in my case,
Left styloidectomy and a right side ohmahyiod resection
Surgery was set for September 2023

The ohmahyoid muscle goes from the scapular bone to the hyoid and at some point crosses over the internal jugular vein, this area was also showing compression when Turing to the right and arm raise.
He believed that there may be scare tissue or adhesion to the jugular, and said this may be common in whiplash patients,
And he would cut it back or disconnect the ohmahyoid muscle in that area.

Fast forward to the one year follow up and we did an ultrasound that showed some high reading in the mid neck (c3-c6) I am not as familiar with the ultrasound and readings but dr said that the numbers were three times as high as they should be in this area.
We also reviewed my CTV (taken at 6month post op) which showed a compression at the c1 on the right side
Suggesting we should do a right sided styloidectomy next
Whew sorry to be so long winded
Lol, but this is the latest

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@harrisonboy I sure hope he can help you out
Being so close to the arteries is thought to be the worst and could be very dangerous with sudden movements and all.:pray:
I hope I answered correctly for you questions as well,
Yes he orderd the CTV , but we did not do the ultrasound till follow up.
He did however order the ultrasound at about the 4-6 month time when I started having return of more bothersome symptoms ,
But for some reason the team at queen’s hospital (in Hawaii) was not able to perform the test the way he wants it performed. I am not sure of the difference in procedure but, we did the ultra any ways (at the six month) and they reported as normal lol.
You can reach out anytime I am here for you and all of or members “in the family”
We are all is this together :heart:
Again this site and the members here has made all the difference in my journey I am so forever grateful

@vap :pray:
I am not totally convinced about the Wi-Fi , I just don’t really understand how it could affect the compression or if it does, but with the Wi-Fi getting stronger and stronger I believe it requires more research for sure
I am glad to hear about the one side going well and will do some catch up readings tonight in your journey.

@Jules Thanks a bunch
Big hugs out to you my dear
I am always so glad to hear your responses , you are just so knowledgeable and loving :heart:

Wishing you all a great painless day
:pray::heart::call_me_hand:

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So sorry for your situation. I know I am terrified that this will never end. I have been chasing this for at least 5 years. I am not good with tests as i tremor really bad.

I am praying I can make this trip and get the test done.

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Yes, he said the left styloid was fractured and laying on the artery. This must have been like this awhile as another growth came in behind it.

I am really worried. I have to admit.

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@harrisonboy know that you are in our prayers and that there is hope this will be resolved
Dr Hepworth has helped a lot of folks and I believe your in good hands
I was also about 5-6 years till I finally had a diagnosis and understanding of what was happening internally, and could finally get treatment
If you find yourself getting worried about potential bad outcomes and “the what ifs” remember that this can be a pattern, recenter and refocus on the positive outcome that you want , just breathe

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I agree. I am in that rut. I have just been through the mill for 5 years and can barely stand up at times.

I just pray I get the answers, because I dont think I can do anything past this.

Bless you.

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A couple of things that have helped me during the early stages
For the anxiety I started to take cbd oil (in a mtc oil base)
Initially I took about 20 mg which I believe is one dropped three times a day, i noticed very little difference until I stopped taking it and had some major anxiety episodes
I did a little more research and found that the dose per person is not very well defined, so I upped my dose to 63mg or three droppers three times a day
This made a huge difference in my anxiety attacks as well as some of the depression moments
I felt that I also had an intolerance to stress and now had more of tolerance to stress than before
For me this helped and I think everyone that’s considering it to do there own research as well as starting out with a small dose to find what works for them
I did not have any complications to speak of and also want to be clear there is no thc in what I was taking, as well as no psychoactive affect,
I did not feel high or stoned or drunk, almost to the point of not feeling any affect other than no anxiety .
I also began to look at the other types of oil with cbd and cbn for helping with sleep
These had also helped get me to sleep when dealing with insomnia
:grinning::call_me_hand:

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I can’t get over how much my symptoms resemble TMJ and just overall jaw issues and sinus/back of the neck pain (which are both kind of far from the styloids) . Also I don’t really have any throat issues like poking or difficulty swallowing. I’m terrified of getting the surgery for no reason, mainly due to cost but also possible complications.
Can anyone validate these symtpoms as caused by ES? Should I continue wwith looking into treatment? There’s still things like CCI and dental malocclusion I could look at, or even just a weird case of TMJ where only the muscles are affected.

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@kline - Unfortunately, the trigeminal nerve is the nerve that causes pain when you have TMJD & is the same nerve that causes very similar/identical symptoms w/ ES so it can be very hard to differentiate between the two. TMJ doesn’t typically cause sinus pain/symptoms, or skull base/back of the head pain, but ES does. You are wise to carefully consider whether or not surgery is right for you as it is a major surgery & takes time for full recovery. If your symptoms are tolerable, surgery should wait until a time when your symptoms begin to affect your quality of life.

There is series of videos on YouTube called Two Minute Neuroscience with one video for each of our 12 cranial nerves. There are 7 of those that can be irritated by elongated styloids/calcified stylohyoid ligaments. You will learn a lot about location, function & symptoms of dysfunction of those nerves by watching the videos. The nerves in question are the facial, trigeminal, glossopharyngeal, hypoglossal, accessory, vagus & vestibulocochlear. Here’s a link to get you started:

Another valuable resource is this post which @Jules made describing symptoms of ES & their causes:

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Thanks for the info @Isaiah_40_31 . My symptoms are almost unbearable, so I need to make a decision soon!

How about the body-wide parasthesias, twitching, muscle jerking. Would it make sense to you that ES could cause widespread issues like that?

I’m also very curious why I would suddenly go from moderate pain to severe pain the second I sit down at my computer, is this a good indicator that it has something to do with ES and nerve irritation around that area that gets activated when head/neck slouch down at my desk?

Another observation is that my tinnitus appears to only be in my right ear, which is the side that is elongated. I think I am getting closer to being convinced that ES is sole culprit for my misery…

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It is so hard to decide about surgery, especially if you’re concerned that ES is maybe not the only cause…Unfortunately we can’t say for sure which symptoms might be caused by your styloids, & doctors won’t either, so really the only way to know is to see what goes after surgery…
We have had some members with twitching, muscle jerking etc, I don’t know how it can be explained unless it’s maybe vagus nerve related. You can use the search function to look up other discussions- I had a quick look & there are quite a few mentions but nothing really concrete as to whether it is definitely Eagle related/ resolves with surgery…
Here’s a link to a research paper about posture changes with blood vessels, I don’t know if that’s helpful to you, but you’ll be able to see how neck position can affect structures inside:
KOSUGI et al. (2020) - Posture-induced changes in the vessels of the head and neck: evaluation using conventional supine CT and upright CT - General / Research Papers - Living with Eagle

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There was a YouTube video posted by Dr. Osborne regarding one of his patients who had “dystonic storms” as one of his ES symptoms. His whole body would go into what looked like a grand mal seizure for a few min. That symptom stopped once he had his styloids removed: https://www.youtube.com/watch?v=Ik2GonNOahw The discussion about his dystonic storm symptoms starts at 4:31 if you don’t want to watch the whole video. So yes, ES can cause muscle jerking followed by extreme stiffness.

Posture plays a significant role in how ES affects the nerves & thus the symptoms. When you sit at your computer, you look down & also when using your phone. Because our society has become very dependent on computer & phone use, we spend much of our days looking down. Over time this position causes the natural lordotic curve in the neck to straighten out which moves the styloids closer to the cranial nerves that run from the skull through the neck thus increasing the risk that they could be irritated & cause painful symptoms. The lordotic curve in the neck develops when we are infants as we begin lifting our heads up when lying on our tummies. When that curve is lost, our shoulders, chest & upper back muscles are all compromised as they try to perform postural acts they weren’t intended to do. As they are compromised, other muscles lower in the body also become compromised as they try to cover for the upper body muscles that aren’t working correctly so it’s a sort of chain reaction.

Here is an image that shows the proper neck position w/ good posture followed by increasingly worse neck positions as posture deteriorates. I expect it will help you understand why your symptoms worsen when you work on your computer.:

This makes a lot of sense as the nerves on the side with the elongated styloid are being irritated by the styloid & thus your symptoms are pronounced on that side. We have observed that there can be crossover symptoms, too, but w/ unilateral ES, that is less common than with bilateral.

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Hi @kline, I’m not on this forum very often anymore as I’ve had an ES surgery that didn’t help my symptoms but u still pop in from time to time. This is an amazing place with wonderful helpful people.

Without going into too many details (you can read my posts if you click on my name) your story and symptoms resemble mine quite a bit. After 7 years and multiple treatments (including outrageously expensive and useless TMJ orthotics, neurologists, neurosurgeons etc etc) I finally arrived at a diagnosis of Lyme disease and coinfections that may explain every single one of the crazy symptoms I’ve been experiencing.

I’m not saying that’s what is causing your symptoms but it’s worth exploring and ruling in and out. I would not rely on standard CDC guided PCR testing as CDC doesn’t recognize chronic Lyme disease. I would find a Lyme literate functional medicine practitioner and get tested through an independent lab like IgeneX or Vibrant Wellness, there are other labs too. Some people don’t even rely on testing as experienced Lyme literate providers treat based on symptoms.

If you’re interested you can start by filling out a free online tickborne disease questionnaire that’ll most likely point you in the right direction. Here’s the link:

HOROWITZ/MSIDS 38 POINT SYMPTOM CHECKLIST - Project Lyme

I hope you get to the bottom of this, let me know if you have any questions, I’d be happy to answer if I can. Wishing you well :heart::heart::heart:

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