Hi everybody. I’m new here. Recently got a working diagnosis of ES. I have been diagnosed with trigeminal neuralgia/atypical facial pain/headache/somatization and after 6 years I finally have a diagnosis that sounds correct. I was also the one to discover ES and then found a dr who was willing to listen.
I just got my CT and CTA images and wanted to post to see what you guys think, I understand it’s by no means a medical opinion, but I want to be prepared for my next visit with my maxillofacial surgeon and ask all the questions. There are a few things I noticed myself, but don’t know if my observations are correct and what it means symptom-wise. The radiologists only observation was “visible styloids, few millimeters from carotids”.
I noticed my styloids seem very thin at the top, is this rather than an elongated styloid a calcified ligament? Is there some calcification on one of the hyoid horns? It also appears that on one side my hyoid is very close to the vertebrae.
A little bit about me and how my problems started.
6 years ago it all began with some dental work. I had a few teeth removed… the pain just didn’t go away. I was diagnosed with trigeminal neuralgia/atypical facial pain/headache disorder. I now know that my styloids were there 10 years before the onset of symptoms because I was in orthodontic treatment at the clinic where my ES dr is now evaluating me and they have my panoramics from back then.
I had ice-pick-like pain in my temple, and when it got really bad I also felt small zaps in my throat and on the back of my head. I was on Lyrica, Tegretol, and later Amyzol and then Cymbalta. There seem to be no compressions on my MRIs. I have a hard “lump” under my ears, just behind my jaw on both sides - whenever they checked my lymph nodes they didn’t palpate there so I never complained. It can become sore. I am not on any medication now. The ice-pick pain then resolved and I developed a burning feeling on the inside of my mouth (only on the left side, where the ice-pick temple pain also was). In November of 2022 (I think that the trigger was neck exercises - chin tucks) I got really dizzy for a few weeks (drunken feeling) and a month later developed tinnitus in my left ear and ear fullness and muffled hearing in the right ear (intermitted tinnitus in the right ear as well). The overall dizziness improved, it now happens when looking down, left and tucking the chin in and the tinnitus has not changed since occurring in December.
At the moment my symptoms include:
dizziness when looking down, left or when tucking the chin in (+ balance issues and problems with reaching for things, I always miss cupboard handles)
tinnitus (tv static-like, always in my left ear, right ear only when laying on that side or compressing that side, right side also now less often a feeling of fullness and muffled hearing, when I get my pulse up the static sounds like whirls that follow the heart rhythm, tinnitus also changes in intensity with eye movement)
burning mouth only on the left side (my tongue, gums and palate burning feeling starts in the back and stops in the middle of the mouth - it is relieved by chewing gum and sometimes by changing the head position to the right side, sleeping on the left side makes it worse and it is more likely to occur during the day)
zaps in the throat (left side more than right)
popping and grinding in the left front side of the throat
swelling in tendons (?) under my ear that continues under my mandible, often sore and changes in size daily
stabbing ear pain mostly on my left side, the right side is much less affected I would say 20%
pain in the temple on the left side, gets worse with exercise and any cardio
occipital headaches in the general occipital area
pulsating occipital pain on the left, that travels to the side of the neck
brain fog, memory issues, hard time concentrating
nystagmus and right pupil is 1mm bigger than left
vision issues in the right eye (fixed dark floaters that change to see-through as if looking through a kaleidoscope, blurry vision, light sensitivity)
had a few retinal migraines without headache affecting my left eye and a corner of my right eye (zig zag rainbows and blurry vision then the sides of my vision went dark)
dry eyes, nose, mouth
POTS-like symptoms (low bp upon standing and increase of hr of at least 30-40bpm, fainting if standing for 20 without moving)
fatigue and feeling like I will fall asleep when reading or doing anything that requires prolonged looking down
neck pain and swelling in neck tendons
general fatigue and dizziness when at work, and mouth burning also gets worse (I work behind a computer and have my chin a bit tucked in when looking at the screen) with neck extension I have 0 complaints so sit with my head out but that’s not great in the long term
Some other complaints that may or may not be connected: I am being evaluated for autoimmune disorders because of my dry eyes, mouth, nose, Raynaud’s, knee and elbow tendinitis (inflammation above the knee and where my triceps attaches to the elbow), back pain, very see through skin and lots ob broken capillaries and visible veins, easy bruising, purpura, some hypermobility.
I attached some images and uploaded angiograms to youtube:
It sounds from your symptoms as if you could be unlucky & have carotid compression with different head positions (the tiredness, dizziness) as well as jugular vein compression (pulsatile tinnitus, brain fog, feeling of fullness etc). I’ll let others more knowledgeable about anatomy comment on your CT contrast images, but it looks like there’s IJV compression between the styloid & the C1process. There does seem to be a small gap between the styloid and then more calcification each side so it might be that rather than elongated styloids you have calcified ligaments. I can’t see any calcification on the hyoid bone ends, but the hyoid processes look pretty long & as you’ve said, very close to the vertebrae, so that could well be causing issues also.
We’ve had quite a few members who’ve had POTS as well as ES, and also autoimmune issues, like Raynauds & Sjogrens. I have very dry eyes & mouth, but blood tests didn’t show anything, those symptoms started at the same time as the ES symptoms really ramped up, so there has to be a connection! It sounds as those you could have some connective tissue disorder with the hypermobility etc, we have quite a few members with EDS, feel free to search that in the discussions! And Ben’s Friends have a Sjogrens Syndrome site you could have a look at…
Hopefully others will chip in with more info for you about your contrast CT.
I agree w/ Jules that you have symptoms of both internal carotid artery (ICA) and internal jugular vein (IJV) compression.
Here is a link that has been post on this forum that details the symptoms of ICA
compression. See pg. 5 for a chart of symptoms. The fact that your pupils are unevenly dilated, & you have the dry mouth & eye symptoms could point to Horner’s Syndrome which can be a symptom of ICA compression.
In the images you posted, it appears you have visible IJV compression bilaterally. Your styloids look long, & very oddly shaped. the left one appears to be touching your jaw bone. We have one member whose styloid joined the jaw bone & had to be detached during surgery.
It’s hard to tell how angled the styloids are just seeing them from the sides. A front view would be more helpful w/ that. Your right stylohyoid ligament has significant calcification coming up from the lesser horn of the hyoid, but calcification on the left in that area is minimal. I agree that the greater horns of your hyoid look very close to your spine (which could also be causing ICA compression), but it’s truly hard to tell if it’s just the position of your head in the image.
I looked at your YouTube videos but just don’t know enough to be able to tell what they’re showing.
As Jules said, hopefully someone who’s better at understanding what CTA scans show will give an opinion.
Thank you for the feedback Jules. Yeah, it seems that I have multiple issues going on. And I came to find out that an ossified ligament tends to pull the hyoid backwards and in my case, it compresses the carotids. So on top of ES also hyoid bone syndrome is very likely. Does removing the calcified ligament free up the IJV or is there a need to have the C1 shaved?
Thank you again for your feedback
I also uploaded two new videos that show a bit more in 3D:
Thank you for your comment @Isaiah_40_31
Looks like I have multiple things going on. I came to find out that an ossified ligament tends to pull the hyoid backwards and in my case, it compresses the carotids. So on top of ES also hyoid bone syndrome is very likely. I was at a pain clinic today and they referred me to a psychiatrist. They were sceptical about my findings in the CT which I understand, so I really need to be well-prepared when going in for a consult with my maxillofacial surgeon.
I also uploaded two new videos that show a bit more in 3D also from below, links are in my reply to Jules.
@Rozmarincek - I’m glad you have a good view of what’s happening in your neck. It sounds like you have informed yourself well & can make a good case for yourself using your CT images & videos. The new videos were helpful! Good work creating them!
Whether C-1 needs to be shaved or not depends on how much of the IJV compression the transverse processes are causing i.e. if the majority of compression is coming from the styloid side, then simply removing the styloids as close to the skull base as possible can be enough to allow the IJVs to open. If more of the compression is coming from the transverse process(es) of C-1 then styloid removal alone won’t do much. C-1 will need to be carefully shaved or the IJVs will need to be slightly moved away from C-1 (this is a procedure Dr. Hepworth uses instead of shaving C-1) so they have more space to expand.
Looking at the new videos you sent, it appears you have a lot going on in your neck. To me, it looks like your IJVs are being compressed predominantly by the TPs of C-1. From what I can see, your styloids don’t appear to be compressing the IJVs at all. Your right IJV looks to be dominant. The greater horns of your hyoid do look long & appear to be in contact w/ your ICAs on both sides depending on your head position.
@vdm, @TheDude, @KoolDude or anyone who’s good at reading scans - if one of you could offer an opinion that would be helpful.
I also agree with the other posters before. My laymans opinion is: Looks like you have massive calcified stylohyoid ligaments with relatively small respectively normal styloid processes and slight IJV compression on the right. Left IJV looks much more occluded to me. Also on the left the calcified part of SH ligament seems relatively close to carotid artery.
Suspicious to me is the hyoid bone that might also be a bit too close to carotid arteries and spine on both sides. For me that would be consistent to the symptoms you described.
Hope that is helpful though it was not easy to me to recognize everything right with the provided material. So hopefully i didn’t tell you nonsense. Take care of yourself.
@TheDude thank you very much for your comment and opinion I have to see what my surgeon says on the 24th… But I was thinking to start off with addressing the hyoid and left styloid and then see what symptoms still persist, if any. I was told that IJV compression usually doesn’t cause symptoms, so I want to preserve my C1 integrity and address it last if symptoms still persist. Would this be a “good” course of action?
Hi @Isaiah_40_31
Thank you so much for all the comments and help in getting my images seen by a few more people
I am from Europe, Slovenia and at the moment the only doctor willing to even consider my case is the chief of oromaxillofacial surgery in our biggest hospital, so probably the IJV will have to wait a bit.
I was thinking to start off with addressing the hyoid and left styloid and then see what symptoms still persist, if any. I was told that IJV compression usually doesn’t cause symptoms, so I want to preserve my C1 integrity and address it last if symptoms still persist. Would this be a “good” course of action?
I work for an OMS and was wondering why you would go to one for this type of medical procedure as it is not typically something they would deal with in the USA. They definitely have the skill set to do it, so it makes sense that you would see this type of doctor in Solvenia.
Your CTA is very interesting. You have very well defined vertebral arteries and huge internal jugular veins relative to the rest of your anatomy. There is a lot of calcification of the styloid ligaments, especially on the right side. While I do see a good amount of compression of the IJVs from the TP of C1, they still have decent flow in this position mainly because of their size. However, flexing your neck forward with styloids like that could cause a severe compression.
I agree. If you have sufficient IJV spacing wrapping around the TP of C1 you should be fine, which it looks like you have plenty. The reason I can say this with confidence is that Dr. Patsalides (an expert in the US on venous stenosis) told me when evaluating my scans that 9 out of 10 scans he gets have some level of compression at C1 and the majority of those patients do not need a C1 shaving.
You have a classical presentation of Eagle’s syndrome - long calcified styloid ligaments. In my opinion as a random person on the internet, I would focus on getting both styloids removed and see how you feel. To me the right looks worse, but the left may be causing you more pain, so that is up to you and the surgeon to discuss. We can’t see what nerves those calcified pieces are pushing on.
No problem. I’d adress the calcified ligaments first. Maybe thats the cause for the hyoid beeing pulled backwards. The IJV should have enough caliber left to drain your head properly. To make sure you could try to get a Doppler-Ultrasound with determination of blood velocities inside IJV.
I’m no expert for hyoid bone, but if doctors suggest to shorten the greater cornu once they are already in, that could make sense too. Better then having a second surgery on hyoid probably. I’d try to determine that very careful before having surgery.
Also important from my point of view is the surgery method. I’d only go for a transcervical approach. (There is a lot of information about the different approaches here in the forum.)
@Rozmarincek - @GCD & @TheDude have given you far better answers than I could have. I’m so thankful we’re a team on this forum!! I hope the Maxillofacial doctor you see is willing to help you!
I think I mentioned that my maternal grandfather was born in Slovenia but raised by relatives in Austria (his parents died when he was young). I would love to come visit your country someday!
Thank you @GCD for your opinion and help in deciding what to do first.
Because I discovered I had ES myself I also had to find the one and only specialist that would consider my problems in Slovenia myself, and I believe he is a good surgeon. He operates cancers of the mouth, throat and neck, so I believe I should be in safe hands. But yes, I see the confusion. For now noone else believed my symptoms and that there something really is wrong and its not just in my head… well it is, a bit lower down in my neck
Thank you @TheDude for all the comments and help. My surgeon told me he is only comfortable with transcervical, and so am I. I also plan to ask him to get my case to all the relevant doctors at the hospital and see if they reach a consensus on what should be done. I believe IJV doppler is impossible to get in Slovenia, even doing a carotid doppler in different head positions was a struggle… if I will still have symptoms after addressing the styloids/hyoid, I know what to explore next. Thank you again!
A fellow Slovene then, how interesting! There aren’t much Slovenes only 2 million now.
Its a really lovely county, we often say that all places are beautiful but our home(land) is the most beautiful of all.
I am so grateful for all the help and comments. I now know what to address at my upcoming appointment. I will continue to post updates and maybe it helps someone one day.
