NB: The DICOM is both a CTA + CTV. The only relevant scans are the following:
“Ven neutral” = Looking straight
“Ven dxt” = right side / looking right
“Ven sin” = left side / looking left
In “neutral position” (chin tucked a bit thought) the IJV isn’t even visible.
My dilemma:
In Denmark I can get a free styloidectomy (either transoral or transcervical) from an experienced surgeon, but C1 resection is not performed here, and there is limited experience with venous decompression.
So I’m considering:
Option 1:
Styloidectomy (one side) in Denmark
Then assess symptom/flow improvement
Possible second styloidectomy on other side in Denmark
If insufficient decompression → revision surgery abroad with Dr. Kamran Aghayev or Dr. Axon (including styloidectomy + C1 shaving)
Option 2:
Travel abroad directly (Dr. Kamran Aghayev or Dr. Axon) for full decompression (styloidectomy + C1 resection)
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Questions:
Do you think - from the pictures - that a C1 resection without a doubt will be necessary?
Has anyone had styloidectomy first, and later needed revision surgery with C1 resection? What did the doctors say about this? Does scar tissue from the styloidectomy make the second surgery significantly harder or riskier?
Is it a problem to operate the same side twice?
Will you share thoughts / experiences with decompression from styloidectomy alone (without resection of C1) and/or revision surgery for full compression?
Any regrets doing it in two stages instead of full decompression from the start?
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I’m trying to understand whether it’s reasonable to start with a (free) styloidectomy alone, or if that risks complicating a later, more complete decompression.
There doesn’t seem to be that much compression from your C1 process in the first image, I can’t see your IJV in the 2nd or 3rd images, the 4th image looks like more the styloid compressing the IJV but then the 5th & 6th images show much more C1 compression! So very hard to say for sure, but what I would say is that to have any chance of stopping IJV compression with just removing the styloids, they would need to be removed right at the skull base, & would your local surgeon be able to do that?
In the last 3 images, it looks like your styloids/ stylohyoid ligaments have pretty much calcified right down to the hyoid bone so this would all need removed to resolve your symptoms too…
Wow, those are pretty aggressive, thick with a sharp inward angle right up near the skull base. That medial angulation and proximity to the vascular structures is what can make them more problematic. My right side was similar, thick, angled, and high at the skull base. My surgeon was able to excise it at that level without a C1 shave, but you really need someone experienced and comfortable working that close to the cranial nerves and vascular structures. Even in the best hands, temporary neuropraxia is still a possibility. To your question, if your surgeon has that level of experience, I would personally go with the styloidectomy first. That’s just my preference, not medical advice.
Yeah in the 2nd and 3nd image (head in “neutral position”) the compression is total apparently.
Thanks for stressing that part - I will check up on whether they remove it fully to the skullbase!
If they don’t - atleast it is easier to make the decision, as I know I will go to Dr. Axon or Dr. Kamran Aghayev instead in that case
Thanks!!
I might not have as much experience looking at styloids. I didn’t realise the styloid were “special” near the skullbase in my case - can you explain more please, sounds important! Does this change the surgery, make it more difficult, or just more important that the styloids are fully removed to the skullbase? What does
Thanks for the input - if she knows what she is doing and thinks she can remove it fully, then I might go for it, as it is free afterall…
Can you see which one (left or right) looks more problematic in terms of the actual styloid being “aggressive”?
@IJVman The reason people mention the skull base is because that’s where the styloid originates, and it’s also where a lot of important structures are packed together, cranial nerves and the internal jugular vein in particular. When the styloid is thick, angled inward, and extends high up toward the skull base, it can sit very close to those structures.
From a surgery standpoint, I’m not a surgeon so I can’t say whether it makes the procedure more complicated, but it does mean the surgeon needs to be comfortable working higher and removing it as close to the base as safely possible. Some surgeons take a shorter segment lower down, but if the problematic portion is higher, leaving that behind could mean symptoms persist. It really comes down to making sure enough of the styloid is removed to address the pressure point. If a shorter segment is taken below that area, then additional procedures like a C1 shave may come into consideration depending on the underlying compression.
As for which side looks more aggressive, to me (not a medical professional), the right side looks more aggressive. It appears thicker, more inwardly angled, and higher at the skull base. The left still looks elongated and somewhat tight, but not as compressed as the right from what I can see. Of course, a surgeon reviewing the full DICOM images will have a much more accurate sense of spacing and compression than these rendered views.
@IJVman - Very nice images! I tried downloading the dicom library link, & it just gave me a blank page. Did you intend for your full set of images to show up via the link?
It looks to me like your IJVs are pretty even in size i.e. you don’t have one that’s particularly dominant. That is a good thing. I also agree that your styloids are tremendously long & thick at the skull base as @MGORNEAU noted. The joints indicate it’s more styloids adjoined by calcified stylohyoid ligaments than just styloid elongation, & as @Jules said, they’re nearly calcified to your hyoid bone.
I also agree w/ MGORNEAU that the space between C1 & the styloid looks tighter on the right than the left. That may mean a left styloidectomy could allow the left IJV to decompress, but you’d need something to be done to C1 on the right in order for the right IJV to decompress adequately. That’s probably not something you wanted to hear.
The greater horns of your hyoid bone also look quite long to me & appear to be very close to your cervical spine. Do you hear or feel clicking when you swallow or have pain or difficulty when swallowing?
Your cervical spine is extremely straight (military neck) which also effectively brings your styloids & hyoid closer to vascular & nerve tissues. The normal cervical curve can be restored but that takes time & patience, & in your case, I think any effort to try to fix that should come once your immensely long styloids are significantly shorter. You can get some insight about how to do that via this post:
Thanks, I’ve read it before and it’s a good source of information - none of the authors are relevant when it comes to surgery though, as you figured might be the case
How certain do you feel about this part? It’s fine to hear, as long as it means I get the right surgeon from the get-go:)
I don’t feel clicking no. I don’t fell “structural” pain when i swallow either - only that the mere movement of my jaw/face and namely hot/cold feed gives some amount of flareup of the pulsing headache - which I guess makes sense if my nerves are sensitive.
I’ve been told that about the cervical spine before, and last month I shortly did some exercises for it but gave up, as I’m honestly not sure whether its a good idea to stretch or not right now. It sounds like you would not address this BEFORE surgery. I might agree, but I’m not sure why - do you have a reasoning behind this?
(and thanks for sharing some ressources on the matter)
I had bi-laterial styloidectomy only in 2020. That surgeon did not consider IJV compression nor did he take out all the pieces of the styloids and/or calcifications in my neck and was supposed to. He also didnt do any C1 shaving as part of his practice. I believe this surgeon was of the opinion that once he took out the elongated styloids at the skull base, everything would decompress on their own. WRONG in my case. I suspect it is easier to just go in and cut the styloids and close you up rather than deal with vascular issues. Might work for some but I think it depends on the individual case. Having a surgeon who is comfortable and makes this a part of their surgical approach I think is important to consider.
One can look at my CT scan before that surgery and see the IJV compression. I personally feel that it is important to have a surgeon that believes in vascular compression, looks for it and addresses it, if needed. Im going back in for revision to decompress and likely do C1 shaves if they are needed. I have a history of whiplash, hEDS, and adhesions and nerve compressions. The first surgeon knew all this and ignored it all. I cant say I am real thrilled about going back in there again. YES I do regret not having it done right the first time but I didnt know any better at the time. I do believe they are not going in at the exact location as the first time but I can say I am certain I have adhesions and scar tissue that might make this more challenging.
Have the US docs looked at your scans and given you opinions on what they see?
The new “view dicom study” link you posted gave me a “try again later” msg. & the first one was a blank page again. I’m happy simply looking at the pics you choose to post.
I should have worded this more carefully. What I should have said was "You may need something to be done to C1 on the right for the IJV to decompress. I don’t feel certain about that, but looking at your imaging, it seems like it’s a possibility that a styloidectomy alone might not give enough space for your right IJV to open enough to provide significant symptoms relief. Remember that I don’t have the privilege of seeing what the situation is in real time like a surgeon does, & what a picture shows is sometimes not what is seen in reality during surgery. Some doctors find it’s possible to move the IJV slightly away from C1 once the styloid is resected which gives it more space to open & allows C1 to be left alone. That is something you could ask about as well during a consult.
I’m really glad you don’t feel any symptoms from your hyoid bone. That’s another area that can be deceptive looking in imaging because from some angles, the greater horns can look perilously close to the cervical spine when they really aren’t.
The reason not to address the cervical spine curve correction prior to surgery is that when the styloids are as long as yours, it can cause symptoms to flare or can add new ones. It’s best to wait to work on that project when the styloids have been shortened significantly to prevent further nerve/vascular irritation or damage.
Sometimes altering the neck to restore the curve can move the styloids away from the IJVs so could improve symptoms, but it depends on the angle of the styloids as it’s possible it could make symptoms & compression worse! I was given chin tuck exercises by a physiotherapist to help tight neck muscles before my surgery and they did help, but other members find this brings the styloids more into contact with the IJVs and some have been told this is dangerous, so we don’t advise that now, but it worked for me! So if it doesn’t aggravate symptoms you could try doing the exercises, but if you don’t feel comfortable doing them then not to worry…
Thanks for sharing. It sure sounds optimal if the surgeon has enough knowledge to decide during surgery whether the styloidectomy alone will give suffient decomression.
Sorry to hear they couldn’t fix it the first time. Have you had new scans to confirm that there is still compression then? And who is doing your revision surgery?
No US docs have looked at my scans. I’m from Europe, so most likely the relevant surgeons are Dr. Patrick Axon (London) or Dr. Kamran Aghayev (Turkey) but I haven’t talked with them yet either - I will soon though
Okay, I give up on the DICOM I reckon. I have some good videos on my phone as wellmwhich includes many angles. But there is no way to upload them here, correct?
I know in my case, the 2nd surgeon can see areas of potential compression before they go in. So when they open you up, they know where to target. If you choose a surgeon that doesn’t consider vascular compression, you wont have the value of that opinion. Different docs have different approaches. I tend to take a wide approach and get several opinions. I also consider and hope the doc I see, which the 1st one did not, my own personal history and circumstance. I have hEDS and I have a history of adhesions and scar tissue and most recently found other vascular compressions elsewhere. They are starting to see this more in EDS patients.
I do know some docs will not review your scans or consult unless in-person appt. I know my doc for a fee of $900 do a cash only review as he does see patients from all over and its a way to get another opinion before you incur costs to fly in. I suggest you can get a read on your scans by several other docs and see if they see vascular compression before making any hasty decisions.
Thanks! I will definitely get more doctors take on my situation, however I think it makes the most sense to ask the doctors that I might end up getting surgery by (that would be Dr. Axon in London and Dr. Aghayev in Turkey, aside from the ones in my home country). I think the ones in Europe are a bit cheaper as well…
Some of our members have uploaded 180º or 360º videos of skull rotation, but I don’t know what format they used. You can try uploading yours. If the file is too big, obviously the system won’t allow the upload but if it’s just the format that’s wrong, it will tell you which formats are acceptable & hopefully you can convert your video(s) to one of those.
It’s 3 videos of 30 seconds. I didn’t manage to upload the videos here.
If anyone uses dropbox, then here is a link: Dropbox
I can also send them to anyone interested on Facebook. I’m desperate to get as many eyes on this as possible - let me know if there is anything I can do:)
