Could it have been ES the whole time?

[Mr.Finer]

Hi there,

I have been in a 4 year long battle to uncover what is happening to me. With a recent CT scan finding mildly elongated calcified stylohoid ligaments most likely due to chronic bruxism (3cm left / 3.5 cm right), I wanted to ask the opinion of some of you who have been around the block with this before I start to get hopeful about the possibility of having a light at the end of the tunnel.

About 4 years ago I started having panic attacks. All the normal panic attack stuff would happen impending feeling of doom, high heart rate, pounding heart, skipped beats etc… they would always be completely out of nowhere often happening while I was asleep or preoccupied with something. In the beginning they were few and far between so I rode them out and made lifestyle changes.

Over the years to come I started

• Spending more time outdoors
• Working out more
• Focusing on quality sleep
• Drinking herbal teas
• Cleaning up an already clean diet (no gluten, dairy, corn, rice, sugar, low fodmap etc)
• cold showers
• Meditating
• Cut out alcohol
• Cut out caffeine
• Implemented breathing practices throughout the day
• Gratitude journaling

When I would have an attack I would implement something new. While the attacks were spread out I would have the feeling like I had addressed it until I would have another one and then the cycle would repeat. It seemed no matter what I did the attacks kept getting closer and closer together.

The last two years they happened frequently and, to my dismay, started to amp up massively in intensity as well. I started to get an intense flush, feeling convulsions / shaking, this feeling like I had to manually control my breathing, and that sensation that if I stayed in one spot or didn’t move that I was going to die or pass out.

Mid 2025 to current has been torture. I have been to the ER numerous times. They gave me some Xanax and told me to take it before coming back next time. I eventually woke up one day and I couldn’t stand upright without my heart rate spiking, hands tingling, dizzyness and feeling like I was going to pass out. Cardiologist diagnosed me with POTs and gave me his condolences some propranolol and told me to have a lot of salt. The propranolol helped with the heart rate and I was hopeful to have some tools to manage things.

Only the downhill slide didn’t stop. Bloating led to gastroparesis and I now can’t eat any solid food besides occasional scrambled eggs and an elemental shake I’ve got. Ive always had a hard time losing weight even as an athlete my whole life. In decent calorie deficits I normally stay where I’m at. I’ve lost nearly 30 pounds in 3 months with a large amount of it being muscle. I have extreme weakness leaving me winded doing simple things, head pressure and headaches, inability to sweat anywhere but my feet which are always sweating, brain fog, neck pain, tinnitus, cold feet, vascular changes, muscle twitching, worsening vision / intermittent blurriness, chest pressure / stabbing pain that gets worse when eating. It’s always been assumed by each medical professional that it’s mental I’ve been put on SSRIs this year, doing IASIS treatments, CBT therapy with no alleviations of physical sensations and symptoms.

I guess my question is, while this would certainly be an unusual presentation of this syndrome, is this a possible progression if it was impinging upon my vagus nerve? My thought process is that as it calcified it started to irritate it more and more until it’s gotten to this state. I am still digging rather than just labeling it POTs because it is frequently not alleviated by laying down / salt intake / or compression garments and my blood pressure is either solid or previously a couple months ago I had some consistent highish readings that didn’t change with body position changes which is not typical with pots.

I have a meeting to discuss the scan with a maxillofacial surgeon which is just a starting point as I also have a meeting with a neurologist at UTSW Wednesday.

Please let me know what you guys think based on your experiences. Apologies for the long scattered post it’s hard with this brain fog

[Jules]

Hi and welcome to the site!
If you’ve not seen it already, there’s info about symptoms & possible explanations in this section:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
We’ve had quite a few discussions about vagus nerve compression, which are searchable using the magnifying glass, but this one is particularly interesting:
Successful Surgery for severe Vagus Nerve Compression - General / Eagle Syndrome Stories - Living with Eagle
All the symptoms you’ve mentioned have been experienced by other members, so could well be due to the styloids affecting the vagus nerve. One of the experienced doctors (Dr Aghayev) stated in an information video that he doesn’t believe the vagus nerve gets compressed, but it’s the sympathetic nerve ganglion being compressed, but all the widespread symptoms we’ve seen, which have resolved for many members with surgery, do seem to correlate with the vagus nerve’s path and function…
Do you have any vascular symptoms as well? You mention brain fog, that can be, but also things like passing out or feeling faint, or dizziness, vertigo, off-balance feelings, head or ear pressure, pulsatile tinnitus …

[Mr.Finer]

Hi Jules, thank you for the response and warm welcomes. I have had dizzyness / faintness / and the feeling I’m about to pass out at times.

In addition to these symptoms I’ve also noted other vascular peculiarities - my feet have gotten extremely cold numbish and tingly. Over the last couple months it feels that my body has lost its sense of when to dilate and constrict veins leading to aching, pain, or bulging veins. I had them looked at for PAD or CVI and they said I looked fine.

[MGORNEAU]

@Mr.Finer Yes, this is very familiar to me. My feet turn bright red/purple when standing, or even when sitting still for a while, and the veins bulge.

I also get positional vascular pooling in my arms when they are at rest. If I raise them above my head, they return to normal.

Mine has improved since bilateral styloidectomy, although it has not completely resolved.

Does this happen in your arms and hands as well, or just your feet/legs?

I’m sorry I can’t say for sure whether it is related to Eagle syndrome based on my own situation, since it has not completely resolved and I am six months post op next week. But if I find any clearer answers in my search, I will come back and share them with you.

[Mr.Finer]

It happens in my arms too. Veins becoming more prominent and noticeable and blood pooling patterns in hands that I’ve never had before. Weird things like my middle two toes on my left foot turning bright red and becoming extremely sensitive to temps. Super weird and confusing!!! Thank you for sharing I hope these things fully go away for you!!!

[MGORNEAU]

That is strange, especially with it being mainly those two toes rather than the whole foot in that particular photo.

For the toes, it might help to pay attention to the pattern: whether those toes are warm/hot or cold, whether it happens more when your foot is down, after heat, after walking, or after shoes/socks, and whether elevating the foot for 5–10 minutes makes the redness fade. If it fades fairly quickly with elevation, that would seem more like a blood-flow/pooling/autonomic-type change. If it is painful, cold, numb, dusky/purple, swollen, or only affecting the same couple toes repeatedly, that seems worth specifically documenting and asking about.

Do you have any swelling around your neck/clavicles or face? I had a lot of swelling in my neck and face. Where we seem to have a similar vascular issue I am just curious. My swelling has improved significantly since the styloidectomies.

This is what my arms/hand pooling looked like. If I raise my arms up they immediately go back normal like my leg. A neurologist was actually the first one who questioned whether there could be a vascular component when he saw my arms in 2023. Unfortunately, one CTA chest was done, and when nothing obvious showed up vascular-wise, the investigation into why it was happening basically ended there. It is creepy!

[Mr.Finer]

@MGORNEAU I don’t have any obvious swelling in the neck or the face. I have occasional sharp pain right right near the sc joint (where my fingers are pointed in the picture) and about halfway up my neck on either side I get sharpish stinging pains sporadically. What was the swelling like for you?

[MGORNEAU]

@Mr.Finer The blue arrow is what the swelling/fullness looked like for me in my neck. Mine was mostly around the base of the neck/clavicle area and into my face and eye mostly right side. I still have some on the right side but near as aggressive.

Your sharp pain near the SC joint and the stinging pains higher up the neck do sound like something that could possibly fit in the Eagle/vascular/nerve irritation bucket, but I’m not sure what specific structure would explain it. Maybe @Jules or @Isaiah_40_31 would have a better idea from your description and location.

[MGORNEAU]

I also noticed you mentioned having a CT scan that showed mildly elongated/calcified stylohyoid ligaments. Length isn’t the only factor that can cause symptoms, angle, thickness, and proximity to vessels/nerves can matter a lot too.

There are a few people on the forum who are really good at reviewing imaging. Do you have the actual CT images/DICOM files? If so, there are a couple of programs that can be used to view them in 3D with a free trial period. Then you could get additional input on whether/how they may or may not be contributing to ES symptoms.

[Mr.Finer]

@MGORNEAU yes I’ve been trying to work out how to open them as I picked up the CD from touchstone and bought an external disk drive but nothing happens when I attempt to open it and I’m not sure if it’s the external drive I bought or if they messed up burning the disc. Either way frustrating!! I’m going to see if touchstone can send me a link to view them tomorrow

[MGORNEAU]

@Mr.Finer If you’re not sure whether the CT disc is readable, you could try opening it a couple of different ways before assuming it’s bad.

Sometimes the built-in viewer on the disc is clunky or won’t launch, but the actual DICOM image files may still be there. One option is to create a free Ambra account and try uploading the disc/images there. If the DICOM files are readable, Ambra should usually detect them and let you view the study. You can register at access.ambrahealth.com. It’s pretty straightforward, but if you try this and have questions, let me know. It’s also a good place to store imaging for easier sharing with providers.

Another option is to download a free DICOM viewer like RadiAnt DICOM Viewer on a Windows computer. If the DICOM files are on the CD and readable, RadiAnt should be able to open them so you can view the images and possibly create 3D views. You can download it at radiantviewer.com. If you go this route, there should be a CD icon at the top left that lets you open the imaging directly from the CD. So if the actual image files are there and readable, that should tell you pretty quickly.

Both options have their advantages, so if you’re able to see the imaging after trying one, it still may be worth trying the other too. Ambra is helpful for storing/sharing imaging, while RadiAnt is better for scrolling through the slices and trying 3D views yourself.

[Isaiah_40_31]

@MGORNEAU - Thank you for providing this information for @Mr.Finer. It’s much more thorough than I would have been able to provide.

[Isaiah_40_31]

@Mr.Finer - It sounds like you’ve been very conscientious about trying logical approaches to symptoms resolution. We know the vagus nerve is responsible for quite a large number of our body’s functions. You seem to have encountered many of those via symptoms you have:

Panic attacks, heart rate inconsistencies, blood pressure dysregulation, gastrointestinal dysfunction (gastroparesis), breathing issues, & body temperature dysregulation can all be related to vagus nerve irritation/injury.

Shaking/convulsions while staying conscious can be a rare symptom of ES called a dystonic storm. There’s a video on YouTube of one of Dr. Osborne’s patients showing what a dystonic storm looks like. You can watch the whole video but the dystonic storm section starts at about 5:07. https://www.youtube.com/watch?v=Ik2GonNOahw&t=541s

@Mr.Finer

I couldn’t stand upright without my heart rate spiking, hands tingling, dizzyness and feeling like I was going to pass out. Cardiologist diagnosed me with POTs…worsening vision / intermittent blurriness,

These are all symptoms of vascular compression that can be caused by ES. POTS/POTS-like symptoms, in particular, can point to internal jugular vein compression between the styloid process & skull base which can sometimes be alleviated by the styloid(s) being cut back above the compression point w/ C1. Other times, C1 needs to have a bit shave off the transverse process. There can also be compression caused by soft tissues such as a blood vessel, nerve, muscle, lymph node, scar tissue, or connective tissue.

If you check out your circulatory symptoms according to position, you should also check to see if particular head positions i.e. looking L/R, up/down, diagonally up/down, cause an increase in your heart rate spiking, hands tingling, dizzyness and feeling like passing out as that can also be indicative of the styloid compressing either your IJV or your ICA (internal carotid artery). Was your CT scan done w/ contrast? If not, the veins & arteries in your neck won’t be easily visible.

@Mr.Finer

stabbing pain that gets worse when eating

Is this in your throat or neck or ? The glossopharyngeal nerve is often responsible for throat & neck pain when swallowing. The trigeminal nerve can cause pain in the teeth & face.

@Mr.Finer

I have a meeting to discuss the scan with a maxillofacial surgeon which is just a starting point as I also have a meeting with a neurologist at UTSW Wednesday.

I’m sorry to be pessimistic, but unless either of these doctors are familiar with ES & the myriad symptoms it can cause, you’ll probably have your symptoms dismissed as being caused by stress, or being gaslit in some other way, & not helped. It’s best to make the most of your time & $ by getting appointments with doctors who know about ES. We have a number on our Doctors List who will do an initial consult via telehealth appt. Most charge a fee. Dr. Osborne has been a go to for a number of our members as his initial consult fee is $250 which is very reasonable comparatively. He also prioritizes ES patients thus waiting times for appointments are much shorter. He does not expect a person who has a consult with him to follow through & have him do their surgery.
•Dr. Ryan Osborne - Los Angeles ENT Doctors ENT Specialists Surgeons Cedars Sinai Medical Osborne Head & Neck Institute, Los Angeles, California. His website is OHNI.org

[Eaholleran]

IDK if it’s any help but giving solidarity.

I had many of the same symptoms and the same thoughts/ideas. I was not taken seriously prior about eagle syndrome and had worsening symptoms for POTS over a few years. I only was this year because now I feel like I’m having issues swallowing and at a random appointment with my dentist for jaw swelling (I was on IV steroids to help the pots). He looked at my old X-rays from three years ago and asked if id ever seen anyone for my eagles. This was a FILL IN dentist I’d never seen! I told him I’d tried but been dismissed by multiple Drs and just given up. So that started my path of investigating it again.

I was diagnosed with POTS about 6 years after it was first noted I had eagles. I have convinced myself that the styloids are at the very least, making things worse (mine are 50&58mm) and am having one removed in Nov and the other in Jan/Feb. I’m praying it gives me some relief in the POTS symptoms as well.

[Mr.Finer]

@Isaiah_40_31 @Jules hey guys I finally figured out how to get my scans. I’m not really that good with the 3D aspect of it but I definitely noticed some asymmetry in either a vein or artery on my neck. It looks like the jugular vein but I’d need you guys to tell me more about that since I’m a newbie.

Let me know if you have any advice for the 3D software or for more images

[MGORNEAU]

@Mr.Finer I am not the guru of imaging, but the sagittal views seem to clearly show significant contouring, particularly the second image. That looks rough, so I asked ChatGPT about that second sagittal image, and here is the response:

“His sagittal view appears to show a markedly elongated styloid/stylohyoid complex. Given the vascular pooling symptoms, it would be worth having the full CTA/CTV or CT neck reviewed in axial and 3D views to assess whether the styloid is contributing to jugular or carotid compression, especially near the skull base/C1 region. A sagittal image can show length, but vascular Eagle usually needs axial and venous/arterial imaging correlation.”

I hope you will consider a consult with one of the ES surgeons on the forum. Dr. Osborne performed my bilateral styloidectomies and is quick to respond for consults, mine in Nov 25 was $250. He is very knowledgeable and honest.

Please don’t hesitate to reach out to one of the surgeons familiar with ES. In many cases, symptoms do not improve on their own and can progress. You have too much life ahead of you, and if this is contributing, it can be addressed.

[Mr.Finer]

@MGORNEAU thank you so much for the response! I booked a consult with him earlier today

[Mr.Finer]

@MGORNEAU This one specifically at the compression spot caught my eye and is on the side that the styloid encroaches significantly

[Isaiah_40_31]

@Mr.Finer - I uploaded your images yesterday & forgot to annotate them so here they are below. I agree w/ @MGORNEAU’s assessment & am glad you’ve got an appointment w/ Dr. Osborne.

[Jules]

I’m not able to see any of the images, so sorry that I can’t comment, I’m guessing it must be something up with my laptop or browser
Does seem to be the laptop, I’ve seen them on my phone… I would just say that it looks like a fair bit of the compression is from the C1 process as well as the styloid process, Dr Osborne doesn’t do C1 shaves and doesn’t feel that they’re necessary, but it does seem to be needed for some of our members, but this is worth considering with getting another opinion, Dr Babu Welch at UT Southwestern would be the nearest doctor to you, or we can give you names of other doctors if you want to get any other opinions…