Intro and Radiology Roller Coaster

Hello everyone and thanks for the warm welcomes and advice I’ve received from mods even before my first post.

The lead up to my severe symptoms has been a long road and I couldn’t quote the amount of time, truly. But I have been voicing concerns involving turning my head combined with talking and/or eating with feeling of presyncope to PCP’s and a cardiologist for 5 years or so. I did end up positive testing for POTS with the casual non-tilt table test and being prescribed midodrine. A neck area ultrasound of vessels did not uncover any related issues several years ago.

In the mean time, I have learned to minimize or stop bending down and forward and have had to modify many job and house work activities to avoid the fainting sensations.

During a Covid furlough period this past January, I was feeling strong and tired of feeling useless around the house to myself living alone. I decided to plug in the chainsaw and make a pile of smaller tree branches. I believe the repetitve bending forward of cleaning up that pile triggered the tachycardia in response to low blood pressure and led to severe symptoms for hours after the activity. I ended up calling 911 and the mobile EKG failed to find an issue. With Covid as strong as it was in Southern Calif. at the time, I declined a trip to the ER.

A few days later I had sudden pain and tightness seeming to come from behind my jaw and ear fullness all on my left side. These sensations soon spread to my neck along the left side. I certainly had and still have a globus sensation. These symtoms have led me to two Nuerologists, three ENT’s, an endocrinologist, an orthopedic surgeon/pain management doc and a couple PCP’s. MRI’s and another ultrasound, this time of the thyroid due to the second ENT feeling what he thought felt like a fluid filled nodule on the left side. Neither test uncovered anything of interest at the time. I’ll add that in the weeks after the 911 call I had a very rough time of being unable to sleep for days, having mini jolts/seizure like jerks while in bed trying to sleep. It took a great deal of self-convincing to brave the covid filled ER’s, but I did with my N95 masks on three times with the effect of being told my symptoms were due to anxiety. During this time I could not predict the terrible flare-ups and became unreliable at work, eventually being pushed onto temporary disability status. The only Dr. that would vouch for anything debilitating was a Psychiatrist; anxiety.

With the second ENT, I had a CT scan ordered but the test date was nearly a month out. Being that he still felt something, I couldn’t take the tension (childhood Leukemia survivor here) and asked him to review the previous MRI. He came back cancelling the CT scan, being satisfied with the quality of the MRI, unfortunately. Thanks to reading on this forum, I learned that CT is the gold standard and referenced the known listed surgeons.

This led me to Shane’s story and to the good news that Dr. Osborne’s practice is only about an hour and half away from me. For insurance billing reasons his office suggested that I again have the 2nd ENT order a CT. I was able to talk him into doing so, and then sped up the process by having it done at an urgent care center that had an open schedule.

After so many endeavors to find a diagnosis, and the general advice among friends that “Dr. Googling” isn’t doing my anxiety any favors, I really doubted the CT would uncover anything, let alone a rare condition like Eagle’s. Then the report came back with the line “Calcification of very superior (2 cm segment) of bilateral stylohyoid ligament. The findings are compatible with Eagle syndrome.” So I had my suggested Diagnosis!

I also had what I needed to set an appt. with Dr. Osborne. I found him to be very calm and re-assuring particularly compared with my 2nd ENT. While he explained there are factors of the styloid other than length, he was very clear that in his opinion no known testing can confirm vascular/nerve involvement to the point of making a promise that surgery will relieve symptoms. At the time, that communication made surgery more of a tough decision, but it wasn’t really an option with the Dr. until we could have the Radiologist provide a measurement and a delineation between the ligament and bone itself. I was sure that I would be ready to schedule if and when the addendum to the report came back. Then I was faced with the line “Upon further review, normal calcified styloid processes are demonstrated bilaterally. There is no calcification of actual stylohyoid ligament below the normal styloid process. The findings are therefore not compatible with Eagle syndrome and are within normal limits.”

So here I am on the roller coaster diagnosis ride. To my untrained eyes, my left Styloid process seems much thicker and kind of growing in an offset manner inward, or as Dr. Osborne put it, medially. Additionally, the distance between the C1 Transverse and Styloid seem dramatically closer together on the left side as compared to right. Again and perhaps unfortunately, the second ENT ordered the test with contrast, and I went along with it due to vascular involvment concerns that I have and were found clear by the radiologist. Now I’m thinking that even with the 3D rendering features of software like Horos for apple devices that I am viewing with, perhaps the contrast is making it a bit inaccurate to view in the bone only stripped down view from a resolution standpoint to pick up ligament calicification vs. bone?

I’ll attach some screen shots from the viewer of both left and right to compare and respectfully ask (plead?) for feedback and suggestions for next steps along with support. Dr. Osborne is requesting a radiologist that he uses have a look at the images, but I am waiting on word they are willing or not.

Sorry so long and I appreciate those that let me catch them up to current. Hopefully my journey can result in some lessons learned and information for the community that suffers through this unique syndrome or at least attempts to rule it out and move onto their individual root cause(s).

Starting with the right unsymptomatic side:

Now a few views of the left to emphasis the distance between C1 and Styloid:

Hi boost7583,

That’s really a back and forth for you while having all these symptoms. I can feel with you as your description reminds me on my situation before surgery. And since it is Eagle Syndrome it apparently comes to a lot of weird things because most doctors have no clue while some have a litte idea of it. Only a very few are real experts and even they can’t answer you every question about ES.

When I read your symptoms and see your pics ES is plausible to me. And I whould wonder if there is no (jugular) compression on the left side as it looks in deed really narrow. In addition to that I’m thinking (but I’m no doctor) that your C1 vertebra (atlas) is looking a little bit shift to the left. That might be a blocking maybe due to muscle tension. Furthermore the vertebra looks like it has a gap on its back side. I don’t know if this means something, but I saw similar things on two people here with similar symptoms.
Do you also have 3D images of the contrast media shots?

I don’t know much about Dr. Osborne than shown on the YouTube video. But he seems to be a great surgeon. Only I read here on forum, that he hasn’t as many experience in ES than others mentioned here. And the shown case in the video looks a bit different. There the SH ligament was calcified from the hyoid upwards. I think that must have been very painful. Luckily the doctor did obviously a fantastic job on him.

For my second revision surgery I came to San Jose, CA from Germany to have the operation performed by Dr. Samji. Prior that he does video consultation and his own measurements, when you send him a copy of your disc’s. That costs $500. I can’t say anything about insurance coverage, because I’m from outside US.
Btw: He suggests styloids from 1.5 cm upwards as elongated as I see his documentation.
My left one was about 2.7 cm after two surgeries and still severely compressing my jugular. In addition to that there are up to 6 cranial nerves that can be involved and cause a whole lot of completly different symptoms including anxiety.

I think it would be worth to try to get a second opinion by an other expert mentioned here. I can recommend Dr. Samji personally like many others here and he is located very close to you at least compared to me. Hoping for you that your insurance will cover that too.

Hopefully that brings you further. Wishing you all the best.


Obviously only amateurs here, not doctors! I would think that it’s possible looking at your images that the styloids could be causing symptoms, they are quite thick & angled; I feel for you with all this backwards & forwards with the diagnosis…I do agree with TheDude that if you don’t get anywhere with Dr Osbourne- if you read this discussion there’s info about what Dr Samji needs:
CT neck non-contrast “styloid protocol”? - General - Living with Eagle
But you ask about ligament vs bone; ES is defined as either elongated styloid process or calcified stylo-hyoid ligament (or both) causing symptoms, so really I can’t see that it matters whether it’s an elongated styloid process, or calcified ligament joined on, if it’s causing symptoms it needs removing. Often they merge into one bony process, sometimes you can see joints & sometimes separate calcifications along the ligaments length. Yours to me look like it’s a long process, it’s impossible to tell if that includes any calcified ligament too, & doesn’t really matter anyway…
I hope that you can get some help soon…


I agree with Jules. They both look thick & angled & the left styloid is kind of a wiggle in it that could cause it to be more of a problem.

I look at the elongated styloid vs. calcified stylohyoid situation as a “Which came first, the chicken or the egg” scenario i.e. did the styloid elongate or did the stylohyoid ligament calcify starting at the tip of the styloid thus making the styloid appear elongated? Jules’ explanation is a good one as well.

Thanks everyone for the thoughtful information, suggestions and perspective.

-I agree with the juxtaposition of the C1 Atlas and the Styloid leaving such little space between, I’m surprised the radiologist “cleared” me of vascular issues in his report.
-Knowing that less than 3 cm caused symptoms for you that Dr. Samji recognized is certainly encouraging
-I haven’t yet figured out how to have 3D views of vascular structures in the Horos software I am using. I might have to download another application suggested by the support group members here. That way I can at least see for myself how close these tissues are to the C1/Styloid clearance space.
-I’ll also have to make it a point to read up on more of your surgery travel experience. Germany to the West coast is quite the journey even by air! I have made that trip once.

-Understood and agree on the ligament vs. process and how they can cause the same symptoms making the identification less important. I suppose the intent is to get the highest measurement to gain more assurance that surgery will relieve symptoms. Or perhaps it’s insurance approval that is part of the equation.

-I really like the word “wiggle” to describe what that left styloid seems to be up to!
-Agree that wiggle seems to make it more likely I would have complications when turning/tilting my head

I’ll keep everyone posted on the progress in at least having a second radiologist reading. Should I run into an unwillingness on that end, I’ll certainly take on another consultation expense (and possibly another CT session) and reach out to Dr. Samji.

If anyone has a suggestion on 3D software that runs on Apple Macbooks, please let me know. Thanks again for the support through this diagnosis process.


Hi boost7583,

I forgot to mention that one reason your CT w/ contrast may not have shown significant IJV impingement is that those CTs are usually done w/ the head in neutral position. In order to see the vascular compression, your head needed to be turned in the direction that causes your symptoms to worsen (i.e. the provocative position). Unless a doctor requests that, it will never be done that way as the radiology lab guys only follow doctors’ orders. If you have a particular head position that makes your symptoms worse i.e. the feeling that you’re going to faint, etc., then that’s the position you want your head in IF you have a CT scan w/ contrast in the future (& prior to surgery).

Thank you for the thoughtful reply on detecting vascular compression, Isaiah.

To make a long update story short, the Radiology group that Dr. Osborne is using is not willing to look at my current CT with contrast due to it being from an outside of their group facility. Additionally, I figured that if I were to take on getting a second CT through this other group, I might as well discuss having some of the imaging done in the provocative, head turned positions. The answer came back they did not agree and will not take them in that manner. If they were willing, the out of pocket is reasonable, and many doctors prefer a Non-Contrast, so I’d go ahead and have another one done there. But it appears I’m being shot down by trying to get a couple steps ahead of the process.

Another step I took to try to move forward was getting back in contact with the first radiology provider, the one that stepped back on the suggested Eagle’s finding. I requested measurements of both Styloids.

Question: In viewing my 3d images above, is it possible the difference in length is only one (1) millimeter (24mm left, 23 mm right)? It just seems to me the difference is greater than such a small figure, but I understand there could be a difference in viewing 2D and 3D and I could just be wrong here. For those following, what do you think overall and on this measurement topic? I’m reading that Dr. Samji does his own measurements and it is looking like his practice might be my next logical step.

I am just catching up on some of your posts. I am very well versed in POTS as my daughter has a severe form of it since age 13 and she is now age 27. 50% of POTS patients have ehlers danlos-hypermobility as an FYI which she and I both have it. Tachycardia is often mis-diagnosed as anxiety. IN POTS your nervous system is in overdrive and can be hypersensitive. See attached chart about dysautonomia - POTS is a subset under this term. POTS in itself is a journey all on its own.

You styloids look pretty thick to me and one is very angled as others had indicated. ES can irritate the vagus nerve and create pre-syncope symptoms so i would think it important to identify if you have POTS and whether your symptoms are from ES irritating the vagus nerve.
I also have the low blood pressure and have to be careful bending over especially in heated condition. This is very common in EDS patients. In fact last year, after doing repetitive yard work for several hours, I fainted (I think) and hit my head and my kids had to call ambulance.

Im curious where you had the tilt-table test and who evaluated your POTS in southern CA. I used to live in the area. Just like when you are evaluating Eagles and you need to seek out doctor who specializes in ES, the same goes for POTS. It has been crucial in the management of my daughters POTS.

WhatIsDysautonomia?.pdf (344.7 KB)

So frustrating for you! measuring the styloids isn’t very accurate, as the images are put together from slices so can vary…we’ve often seen on here members’ styloids are measured much less than they are found to be in surgery. I guess you’ll have to see what the first radiologists come up with. But in addition to the length, the width and angle play a part in causing symptoms, as we’ve mentioned, I would say don’t get too hung up on the length, but I appreciate that that’s all some radiologists do take into account!
I hope that Dr Samji can help if that’s the route you decide to go…

Thanks for the info on POTS, Snapple. I have certainly experienced worse symptoms in the heat, too, and I feel for you and your daughter in having to fight these effects. I can say that if the effects for me went up a notch or two I would have to make major life changes.

As an update, Dr. Samji’s office has received my packet. I’m hoping to gain some direction from his consultation. At the moment, I’m more worried than ever about what my next steps will be if I turn up negative for Eagle’s or with a condition that otherwise cannot be surgically remedied by the Dr. I have been tracking down local providers of digital xray in order to evaluate for cervical instability. Other than that, I suppose it would become necessary to seek out evaluation at a learning hospital near me like UCI medical center, USC Keck or UCLA.

Has anyone else had to give up their source of income in order to find a diagnosis and effective treatment?

Hi boost7583,

I’m glad Dr. Samji is reviewing your scans and hope that he says he can help you. Please keep us posted as to what you learn from him.

We have had members who’ve had to take leave from work because of their severe symptoms from ES. I’m not sure if anyone has had to completely quit his/her job, but with the number of members on this forum, it’s a good possibility. Hopefully you’ll get some replies to your question from people more knowledgeable than I am. I am sorry to know your situation is grave enough that job loss is a possibility. I will pray for you to get a diagnosis & treatment soon enough to keep so that from happening.

I’m glad you’re near some excellent teaching hospitals if it comes to needing a deeper level of testing to determine the cause of your symptoms. All 3 are great resources. I think Snapple got some good help from UCLA Med Ctr in the past. (She can correct me if I’m wrong… :wink:).

Yes, I personally have had very good luck at UCLA Neurosurgery department and have had several surgeries there. There is/was a Dr. Batsdorf who has a high level of expertise with EDS and chiari syndrome. A close friend of mine has had several surgeries with him but he has retired but still hanging around. Whoever his replacement is, is who I would suggest a consult with. If they cant help you, they will refer you to someone else in their system or department.

As for POTS in CA, Standford has an Autonomic Disorders Program. Here is a list of docs off Dysautonomia International: Dysautonomia International:

Scripps San Diego/La Jolla probably wouldn’t be a bad place to start if you want to stick to so cal. Andrew White or Thomas Ahern look like good choices. It will likely take a few months (3-6 months) to get in to see them so make an appointment now which can always be cancelled.

For EDS: I would contact one of the support group monitors for CA to find docs with experience with EDS and cervical instability. Just like ES, finding the right doctor will prove challenging.


We’ve missed you, Snapple! Glad you had a few minutes to post today.

Thank you for always have great information to share! I appreciate your contributions more than I can say!


Hey there. Sorry I have been missing in action. I went on a mini-road trip and just started training for a new job :crazy_face:


Glad you got out & about! We all need that sometimes!!

New job! HOORAY! :clap: