@MGORNEAU I’ve attached my own imaging to help you know what to look for. Looking for C1 in the axial view. It’s the vertebrae with a white circle in the center/top and the vertebrae has wings.
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Yes its like being stuck in a never ending chess match where the medical world has the upper hand because they feel fine and if they cannot see it you must be fine or crazy!
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okay give me a few minutes
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One upside though, if Dr. Nakaji did not suspect he could possibly help you, he would not send you on a wild goose chase to get the CTV. The fact he asked you to get it, I think, is a promising sign that he is suspect of something. Otherwise, he would just tell you there is no obvious concern and turn you away, for that complaint at least.
That is the way I see it.
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Not sure right level? These are from the CT face without contrast, first one is bone and second is soft tissue
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Yes, exactly, I meant with the medical world in general. It’s been a very long journey to get to this point, and for much of it the medical community seemed to hinder rather than help my progress toward a diagnosis. But I have a lot of hope now, especially after the Stanford second opinion, finding this group, and realizing there are medical professionals with the expertise and compassion to truly help.
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@jyoti -
I’m doing well. I had my first surgery in 11/14 & my second one 08/15. For the most part, my nerve symptoms went away over the course of a couple of years. I did get First Bite Syndrome after my first surgery which has stuck with me all this time, but I rarely have a problem with it anymore & am so used to it, it isn’t a big deal now.
My only problem w/ Dr. Samji is that he doesn’t acknowledge the styloids can cause or be a partial cause of IJV compression (?!?!). I suffered a cycling accident w/ a head injury in between my 2 surgeries where my C1 shifted left causing IJV compression. I was too new to this forum to recognize the symptoms & ended up being diagnosed with Meniere’s Disease because I also had hearing loss among the symptoms. Dr. Samji didn’t cut my left styloid as short as promised, & since I discovered the left IJV compression in 2022, I’ve wondered if he saw it & “ran from it” by not cutting my styloid close to my skull base, or if there was some other reason he left it longer than promised. My surgical report was no help in solving the mystery as his reports, at least back then, weren’t terribly thorough. Dr. Hepworth did a revision styloidectomy & IJV decompression for me last October. I had some recurrent trigeminal & facial nerve pain that has resolved since my styloid was cut shorter. I’d hoped the IJV decompression might restore some hearing loss I’ve suffered since the head injury, but it hasn’t. It was worth a try though. 
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It is such a long journey, isn’t it? And so many hopes, some dashed, like your hearing. But it is interesting to me how few of us throw up our hands and give up. Obviously, we feel terrible and want not to, but I would say there are a lot of illnesses where people resign themselves more than in this arena. I don’t if or what that means; just an observation. I am glad you are doing well!
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@MGORNEAU see attached annotated imaging.
Hard to conclude too much since your CT didn’t include contrast by the look of things.
Your styloids actually appear quite a decent distance from C1 which is good. I’ve labelled what I think are the IJVs but it’s hard to say for certain since there isn’t any contrast in them. I don’t think your styloids are causing compression which is good. CTV would tell us.
I can’t tell what the front most bone is. It would be strange to see a greater horn at the level of C1, so I’m thinking it must be calcifies stylohyoid ligament, but you wouldnt expect to see the styloid and it in the same frame because the styloid typically becomes the calcified ligament (i.e., it would be one continuous piece).
To see the full length of your styloids I think your should construct a 3D model. If you have a windows computer, you can download Radientviewer, then open your imaging using it. If you have mac computer you can use Bee dicom viewer. I think a 3D model will help us better assess the length and thickness of your styloids (and potential stylohyoid ligament calcification) and we can guestimate how close they could be to other vascular structures.
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We are a tough lot here as you noted, @jyoti! So many of our members have become amazing self advocates out of desperation & necessity. We “keep on keeping on”! I’m not done w/ my ear journey yet either. Getting help with & resolution for health issues can be quite the process.
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Yes, this imaging is from 2023 without contrast, unfortunately things have been progressive. My cervical MRI in 2021 showed no lesion at C1, but the 2025 cervical MRI clearly shows a lesion between the blue arrows, acknowledged by the Stanford neurosurgeon. He felt it could be a fascial band from the elongated styloid process. Dr. Kamran Aghayev describes a soft tissue band at the C1 transverse process that may need to be removed if it causes jugular vein compression on his website. I’ll be asking that the head be included on the CTV so they can see exactly where the compression is coming from.”
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Are you able to get your CTV soon @MGORNEAU?
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I hope so, the vascular surgeons nurse said she could get me in easier if I go down to Boston BIDMC, rather then waiting for an opening at Anna Jaques which is closer to me. I let her know which ever is fastest, but will be read by a radiologist the surgeon trusts.
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The soft tissue band he describes is likely the posterior digastric muscle, a muscle that can compress the IJV at the level around C1/C2
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Maybe, AI says it is a lesion.
and the neurosurgeon said it needed serial MRI’s
Sorry, I mean the soft tissue that Dr. Kamran describes on his website. He’s probably referring to the posterior digastric muscle. It’s a muscle very commonly removed during IJV decompression surgery
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I don’t know he doesn’t reference a muscle, he specifically states, In addition to bone removal the surgeon may look for soft tissue bands that may cause jugular vein compression and release them. It is on his website under number 3. Cervical Styloidectomy with C1 Transverse process Resections.
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I downloaded the RadiAnt software (thanks for the recommendation!) and used it to review my 2023 CT neck. I’m not entirely sure where the styloid measurements should officially begin, and would really appreciate input on that.
Here are a few of the 3D reconstructions. AI flagged that they wing inwards.
You’ll notice some floating objects — those are clips. I had a total parotidectomy on the right side (including an accessory parotid gland) in March 22 . The duct kept sealing, so saliva had nowhere to go — something that took three years to figure out!
Curious to hear your thoughts on both the measurement starting point and the inward angle.
@MGORNEAU I’ll let @Isaiah_40_31 take a stab at this as she is experienced with the 3D imaging. Styloids are definitely longer than 3cm though. I’d guess somewhere between 4-5?
Wait a minute - I thought the CT from 2023 didn’t have contrast? How is it we can see your IJVs in these 3D models, but not in the axial view of the imaging? Interestingly odd.
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