I haven’t written in a while, it’s been a couple really bad days of not being able to open my mouth, the sides of my lips cracked and bleeding, and terrible tightness in my throat, strangle sensation. I desperately made an appointment to see dr yian ENT in Orange County next week. I still have no clear plan with insurance for surgery with dr Osborne, and the suffering has been awful. Asking for prayers from anyone who prays. Depression has never been something I’ve suffered with but not sure how long I can suffer for. This feels hopeless.
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Thanks for the update and hang in there @Samk13 . Hoping your appointment with the ENT is helpful!
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Thank you so much
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@Samk13 - It’s been quite a while since any of our members have seen Dr. Yian, but it seems he is knowledgeable about ES based on what our members who’ve seen him have said. The only thing I’d caution you about is if you have vascular compression, especially of the internal jugular vein, you’ll want to see one of the ES surgeons who deal with that specifically as otherwise, you may end up w/ a styloidectomy surgery that doesn’t relieve those symptoms.
I’m sorry to say, I can’t remember if you posted any of your CT images or commented about your radiology report. You’re welcome to post your relevant images on our forum w/ your personal information removed. You can convert your CT slices to 3D images using radiantviewer.com (PCs) or Bee Dicom Viewer App (Macs) so you can better see what’s going on in your neck. We welcome 3D images & axial CT slices here & can give our non-medical opinions which you can take to your appointment for discussion.
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I’m only going to see dr yian to hopefully get some medication or better more clear images or testing while I wait for insurance to go through with dr Osborne. So far I only have a CT of the neck without contrast. I’m trying so hard to figure out how to download the images but it’s in video form? Like 400 images that move. Here’s some I was able to screen shot. My goal is to get another image I can understand better. I’m desperate for relief while I wait for surgery. Thanks for all the feedback and always listening. You guys are true angels.
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@Samk13 see if you can pause the video at this slice:
It’s the top vertebrae (C1) it has a white circle in the top middle
Here’s what I found on my sliced images. Thanks for your help
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@Samk13 see attached annotated image.
The space between your styloids and C1 seem o.k, with your left side looking a bit tighter than the right. Hard to say exactly where the IJVs are without contrast, but I’d say the styloids likely aren’t putting too much compression on them (at least at this slice, but they still could be it’s just hard to judge). However, that’s not to say that the IJVs aren’t pancaked against C1, and only contrast would give us a better idea.
How long are your styloids? Do you also have pockets of calcified stylohyoid ligaments, or just elongated styloids?
Now that you know where the styloids are, you can follow them up and down the imaging, but you won’t be able to see much vascular-wise without contrast unfortunately. Not a radiologist and it’s difficult to conclude much with one slice and without contrast. Sometimes styloids are so close to C1 that it becomes blatantly obvious (contrast or not) that they are causing IJV compression, but trickier in your case because the spacing isn’t terrible
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Wow thanks so much for this feedback. Gives me a little bit of relief……. my right styloid is 3.7 and my left is 3.5 both calcified. I’m assuming goes hand in hand with all the terrible dental work I had done trying to figure out my symptoms. Had 4 teeth removed in December and my symptoms got worse, without much relief. Hoping to get a contrast CT and move forward with surgery sooner than later. Thanks again
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Definitely long enough to cause some nerve irritation! Come back to me with your CT with contrast if you want and I can take a thorough look.
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I hope that Dr Jian can prescribe you something to help, I think others have spoken well of him as a neurologist… choking and gagging must be awful, and the strangled feeling- that can sometimes be from the hyoid bone or from the ligaments being calcified from the hyoid up, so you’ll have to see what the CT shows of them.
Praying that these symptoms ease for you & sending you a hug 
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@Samk13 - it frustrates me that radiology reports only comment as to whether styloids are elongated or not in the radiologists opinion. There are other features besides or instead of elongation which styloids can exhibit like being extra thick, curved, twisted, angled, having bony outgrowths, etc., that can cause miserable symptoms, too. Also, a number of our members have learned, once they’ve had surgery, their styloids were significantly longer than the radiologists measured
Even though your styloids aren’t excessively long, the fact that they’re segmented (as per your report) could be contributing to your symptoms, too.
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