I played around with 3d slicer and found that it could do some of the images easily and others labeled as ending in “topogram” with great difficulty. I assume the non contrast images were labeled correctly as sagital, coronal, and ap and were easy for 3d slicer to handle, because when I added topogram to 3dslicer, it slowed down considerably. Either way, I got decent images totalling 385 altogether. This is both non-contrast and contrast images together. Not sure what differentiates them in the file labels? I uploaded decent images that were non-contrast coronal and all non-contrast views, I believe. My styloids were long bilaterally. I cannot tell if styloids are impinging on vessels. One ENT doctor did not seem to think so, but again his training in this area is somewhat limited. He basically just knows how to remove the styloids safely from inside the mouth when he can palpate them with his hand.
I have been having cranial nerve problems for a long time it seems. I have had many peripheral nerve surgeries including TOS release bilaterally, suprascapular nerve release bilaterally, dorsal scapular nerve release bilaterally, auriculartemporal nerve release bilaterally (by ear), and many others outside the head and neck. I think I have vagus nerve dysfunction in addition to POTS, making it difficult to concentrate on things and possibly making my fight or flight response go haywire increasing muscle tension everywhere, hence all the peripheral nerve surgeries to cut tissue away from nerves. I don’t expect doctors to diagnose anything besides the styloids unless I send out my CD images to UCLA, Stanford, and doctors mentioned on this forum. It is tough to know if I should just cut the styloids out and go from there to see what symptoms remain or try to travel and get all these tests before cutting out styloids to get the exact right operation which could take awhile. In addition, I have other nerve surgeries to add to the mix that are a little less important than dealing with ES, but still important.
Wow, they look pretty long styloids! The gap between the styloids & C1 looks a reasonable size which is where there’s often compression, but on the second image you’ve posted it looks like there could possibly be some compression of the IJV higher up near the top of the styloid & the skull base- I’m sorry I can’t label the image for you, & it’s not that clear so I could be wrong!
It’s difficult sometimes to know who to see for surgery & what tests to go for, but given you believe you have cranial nerve issues & that several of these nerves exit the skull right beside the styloid (along with possible compression of the IJV at the skull base), I’d certainly opt for external surgery and not intra-oral, with an experienced surgeon who can remove the styloid as close to skull base as possible. So worth consulting one of the experienced doctors on our list if you’re able…
Yeah, I thought so. I have the images uploaded to dicomlibrary, but I also downloaded the images in png format as well. Let me know if I should zip any files and attach to this post for more clarity. I sent the images to Nakaji to look at them. Hopefully, he can see any nerves and/or vessels being compressed near skull base.
Nice job w/ your 3D images, @jobby99! I agree w/ what @Jules said about your right IJV looking compressed up at the top. Your styloids look like daggers in your neck so no wonder your cranial nerves are irritated! I’d guess they’re longer than measured. I also noted that your left styloid is very thick at the top. There isn’t a similar image for the right one, but if it looks the same, it’s possible it’s causing IJV compression up by the skull base as Jules noted.
You can see on the right in this image how the IJV is flattened a bit. That can be indicative of some compression occurring. The left side is also a little flat/not round which could also indicate you have some compression on that side. Remember I’m not a doctor so this isn’t a diagnosis. It looks like your right IJV may be your dominant IJV. Not everyone has a dominant & non-dominant IJV but quite a number of our members seem to.
In this picture, it looks like the tip of your right styloid may be touching your internal & possibly external carotid arteries. That can also cause pain & sometimes stroke-like symptoms.
I also noted you’ve lost the lordotic curve in your cervical spine which is also the case for many of our members. That can push the styloids more forward & into the very vascular & nervy interior of the neck which puts nerves & vascular tissues at greater risk for irritation/injury.
Thank you for commenting. I am having trouble getting a CT Venogram that Dr. Nakaji wants, but can’t order probably because he can’t see me right away or do virtual at least. He must think that it is needed based on the CT scans. I totally agree with compression of the vasculature. It does look like the thicker bone is a problem. Hoping to see a more experienced provider soon to at least get more imaging and opinions.
