i have been dealing with finding help for about 4 years now i have been to 4 neurologists and 3 different ENT Dr. it all started with horrible headaches that ended up putting my in the emergency room to be told i had migraines… fast forward a year after trying every possible migraine medication with no luck my face started feeling like icy hot on my left side, i went back to the hospital they said i had a bad sinus infection. long story short after multiple rounds of antibiotics they did maxillary sinus surgery. the headaches got better but the icy hot feeling did not so i went to a different ENT for a revision surgery. still had the same outcome. i was told i had tmj and i went and saw a specialist i did the whole Invisalign treatment the only thing i got was straight teath. but i did have a cbct done with the tmj dr. but nothing was ever said about ES. fast forward 2 more years of no improvement my left submandibular gland started to swell and hurt. i had surgery to remove that after it was deemed it was a bad gland and while in there the dr. found a calcification but the dr not knowing left it in. i forgot to mention over these 4 years ive had 3 cat scans and 5 mri trying to figure out the nerve issues. it wasnt untill i found this forum that i took some of my cat scans and made then a 3d for my self. i want you guys to take a look at these pictures and see what you think. sorry if i did not do this correctly i am not very good on a computer. i guess if you guy think this is something that fits ES how would you go about the next step.
PS i cant figure out how to get the photos in this
@k938271r - Welcome to our forum. I’m sorry you’ve had the correct imaging but have ended up seeing doctors who are clueless about ES plus having surgeries you may not have needed. Your symptoms certainly sound like they could be related to styloid elongation/stylohyoid ligament calcification.
Images can’t be uploaded onto the forum until after you’ve written a post which you have now done. I checked your account & you’ll be able to upload your images now. You can either add them to your first post by clicking on … then clicking on the pencil icon that shows up or you can start a new post below mine to add your pictures. I’m looking forward to seeing them & am glad you took the initiative to make 3D images w/o being prompted to by someone on our forum.
forgot to mention the pain in the back of my mouth my SCM muscles are supper tight me ears are always clogged feeling and pain under my ears I’m pretty sure this is ES but I’m looking for your guys input and help. weird part is my left side hurts way more then the right and the right seems way bigger to me. i know these are not as big or long as some of the classic cases but something just don’t feel right to me. and this scan was from march of last year, not sure how much they grow over time so they could be bigger now
@k938271r where the arrows are pointing is normally an open groove on C1. From what I can see, your right side looks completely bridged, and the left is at a weird angle but looks suspicious for possible bridging too.
The vertebral artery runs through this groove, and the suboccipital nerve is in that region as well, so it may be worth asking whether this could be contributing to some of your symptoms.
I’m not saying this is definitely the answer, but in my case, I wish all of these structures had been considered together earlier instead of only focusing on whether the styloids were elongated.
Your styloids do look longer than ‘average’, and are very needle-like, so it could well be the cause of your symptoms… the icy/ hot sensation could well be either the Trigeminal nerve or the Facial nerve being irritated, both of these are commonly affected with ES… Migraines are also common symptoms- these can sometimes be caused if the blood vessels in the neck are compressed between the styloids and the C1 processes, a CT with contrast is the best way to show this, timed so that the arteries and the veins are both scanned, but it sounds like you’ve already had quite a few CTs over the last few years, the radiation can add up… But the clogged feeling in your ears is also a common symptom with Internal Jugular Vein compression. Tight SCM muscles are also common, whether it’s from tensing with the pain, inflammation in that area or maybe even posture we don’t know. And quite a few of us have had blocked salivary glands too, that’s how my elongated styloids were discovered…
Dr Cognetti in PA does review scans and arrange consults if he feels it’s needed, so he would be a good doctor to see, he treats vascular ES. I don’t know anything about the potential bridging with your C1 processes so can’t comment on that, it’s a good spot by @MGORNEAU - thank you!
@k938271r - The angle of growth of the styloids can play a significant role in the symptoms each styloid causes. Your left styloid, though thinner looks to be curving toward your mandible (lower jaw) whereas your right one, though thicker & longer looks to be straighter.The position of the left one is likely why you’re feeling worse symptoms on your left side. Can you post a picture of your styloids from the front?
In addition to styloid elongation, you also have bilateral ponticulus posticus/arcuate foramen of your C1 vertebra. This isn’t a terribly uncommon situation, but when it occurs, it can cause significant symptoms. Those added to what your styloids are causing are possibly why you feel so miserable. Additionally, there’s the information @MGORNEAU provided about it appearing that the foramen on each side of C1, through which the vertebral arteries pass, appears to be missing in your imaging. That could just be a function of the particular slices you posted & not actuality.
@k938271r - Most 3D conversion programs have a tool that allows you to cut away bone to see what’s behind it better. I’m not well versed in using the 3D slicer programs so can’t describe what the slicing icon looks like, but hopefully someone else can. Being able to remove the bones that are in the way would allow you to provide a picture from the front. You can also post a CT slice at the level of C1 as we know how to identify, styloids, IJV & ICAs at that level.
I’ve annotated the image you just sent. The ponticulus issue is quite visible on there as well as your elongated styloids. Though I labeled specific areas as ponticulus posticus, it’s really a situation w/ the whole transverse process area on each side.
figured it out took a little time but i think i got what you guys want to see. i did put a call into Dr. Cognetti office they want me to send my scans to them for a review before they schedule anything.
On the left side, it’s your ligament that’s calcified. Your styloid is actually quite short. The ligament calcification is then & definitely long. Another option is that the styloid has broken up near the skull base & created what we see on your imaging on the left. Regardless of the scenario, the calcification is significant & could definitely be problematic.
On the right, the styloid is thick & elongated as well as more angled inward. The thickness & angle could more likely dispose it to cause IJV compression. Do you find your symptoms worsen in any particular head positions?
only thing that makes any change to any symptoms is to lay down and sleep. taking a shower helps temporary but sleep helps a lot and then as the day goes on they get worse and worse. not sure if the weather can have a affect on it or not still trying to figure that out.
Hot weather used to make vascular symptoms worse for me, while cold weather made the nerve pain etc worse, I think being tense & shivering, and cold wind is often a trigger for facial pain/ neuralgias… Lots of members have noticed barometric pressure affecting symptoms…
