Both Mr Axon & Dr Aghayev do online consultations , I think someone posted that Dr A does an initial consultation free, but I don’t know for sure…
@IJVman - HOORAY!! The Dropbox link worked!! I was able to see your videos. I took some screenshots & annotated a bit more for you. I’m having a hard time telling whether just having your styloids shortened as close to your skull base as possible will be enough to allow your IJVs to open satisfactorily. It looks like they are playing a significant role in the IJV compression, but from some angles, the TPs of C1 also appear involved. You do have bilateral collateral veins which are telling of the bilateral IJV compression that can be seen in both your still images & the videos.
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Awesome 
Thanks for having a look and annotating!
Okay, I only knew I had collaterals, but I was not sure whether that crazy “mishmash” of blood was a part of those. Thanks for clarifying that.
From your photos/annotation it seems like you think C1 is involved in both sides. If I choose to go down the “option 1” path (that would be getting a styloidectomy in 1 side first and see what happens), do you have any firm reason to believe one side would be better than the other? Would you still say the left side is the best bet, even though the shape of the right styloid is more “aggressive”?
Let me know if more videos from different angles would help!
thanks in advance,
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Do you have nerve symptoms or any other symptoms more one side than the other? If so, then better to try the worst side first…if not personally I’d opt for surgery on the left first as the stylo-hyoid ligament is almost completely calcified down to the hyoid bone. Often doctors will have an opinion based on the scans though…
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Not really, I would said it pretty much the same. If any I might have said a bit more often that the right side has been a tiny bit worse sometimes, but I reckon that’s mainly because I’m right handed / uses my mouse/trackpad on my computer many hours each day with this arm = tightens a bit more.
But I’ll hear what the doctors think yes:)
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@IJVman - The advice @Jules has given you agrees with what I would have said. I do think it’s worthwhile just getting your styloids resected first because of how thick they are coming off the skull base. If you can find a local surgeon who will cut them above C1, your IJVs could open on their own w/o anything needing to be done to C1. No promises, but there is a possibility.
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Thanks for this awesome list! I’m going to educate myself tomorrow. 
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Okay, thanks for letting me know. If the Danish surgeon feels confident about removing them near the skull base, I will likely try getting the styloid in one side resected and see if it works, as this is free of charge and potentially saves me a lot of money. + if it is enough I obviously prefer the “least” aggressive surgery necessary.
Anyway - the danish surgeon is going to offer both a transoral and transcervical approach. I know from studies and so on, that transcervical in generel is best (especially when we are talking about jugular vein compression). But would a transoral styloidectomy make a later revision surgery (including resection of C1) way easier/safer? If that is the case, do you guys know whether the transoral be preferred, even though my styloids are very long?
I wouldn’t opt for transoral, the surgeon wouldn’t be able to remove the styloids safely close enough to the skull base that way.
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Oh, I didn’t know that transoral necessarily meant that the styloids can’t be removed close to the skullbase. Do you know why, if I may ask? Is there anywhere I can read about this?
Thanks:)
The styloids can be removed close to the skull base transorally depending on where the incision is made in the throat/mouth, HOWEVER, the majority of surgeons who do transoral surgeries just shorten the styloid through the throat & don’t aim for a skull base removal. That’s why it’s important for you to ask how close to the skull base the styloid will be removed &/or how much of the styloid will a given surgeon remove. Some will only “snip the tip” off where others only cut them back to “normal” length. Neither of those options have proven very successful for patients who experienced them.
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Here’s a link to one article about the 2 approaches:
Complications in intraoral versus external approach for surgical treatment of Eagle syndrome: A systematic review and meta-analysis: CRANIO®: Vol 42, No 5
And another couple:
Article about External vs Internal surgical approaches - General - Living with Eagle
Transoral Route or Transcervical Route? - General / Research Papers - Living with Eagle
There’s more info in the Newbies Guide Section about surgery, the articles above are linked there:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
There are more research articles which mention the external approach being better but can’t find them at the moment!
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Okay, thanks - I would of course ask the doctor about this then.
IF I choose the “free” styloidectomy first, I can either get it done transorally by someone who has done it transorally 15-20 times. Alternatively I can get it for free by someone who has done is only 3-4 times, but all of them transcervically, by a highly skilled surgeon with 30years experience doing surgeries on the neck/throat/skullbase.
Do you know how the specific experience (doing styloidectomy) vs generel experience should be weighted in the decisions? If a lot of experience with the specific problem (eagle syndrome) is way more important than “generel experience” doing head/neck/skullbase surgeries, then I will probably have to leave to country (which is fine if I have to).
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Thanks! I have read most of those earlier (as I wanted to show them to the local doctors when talking about surgery). The only reason I consider transoral a bit is that the local doctors only has done a transcervical styloidectomy a couple of times. AND if the transoral approach for the styloidectomy alone would make a eventual revision surgery - if necessary - easier ( I have no clue whether a transoral styloidectomy actually makes a later transcervical revision surgery easier, or if the scar tissue is just as bad). Have you?
I’m very interested in your thoughts about my question to Isaiah as well, about generel experience vs specific experience, if you don’t mind
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In my case, I was diagnosed & offered surgery by an EnT skill based surgeon who had more years of surgical experience than the surgeon I chose who had specifically done a lot more ES surgeries. The reason for my decision was that I had found this forum & read discussions about the two ES surgical approaches. When I asked the more experienced surgeon about his approach to the surgery he said he’d do bilateral surgery - one side transcervically & other intraorally & would keep me in the hospital over night. When I asked how much styloid he’d remove his answer was “some” (very concerning!).
The surgeon who had more specific ES surgery experience offered to do each side transcervically but separately & would cut each styloid as close to the skull base as possible. The surgeries would be done out-patient.
What put me off about the more experienced surgeon was his sketchy explanation about how much styloid he’d remove & that he planned to use a different approach for each side.
I don’t believe that having a transcervical surgery approach will affect your ability to have a revision surgery transcervically at all. I had two trascervical surgeries on my left side w/o a problem.
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Thanks!
That makes sense. In your case, I would have done the same!
This is good to know. Then - if i end up trying a free styloidectomy first - I will probably choose the surgeon who does it transcervically (even though she only has done it 3 times) and has many years of experience.
The main argument to consider the male surgeon who does transoral approach seems bad then, if a revision surgery wouldn’t be considerably easier having had a transoral styloidectomy earlier.
The female surgeon (with a lot of “generel experience”) may have a lower succesrate removing the styloid all the way to the skullbase than someone who has done it a 100 times I reckon, but at least she would be skilled enough to do a styloidectomy safely. Might be worth a shot then. I have a consult with her next month which will provide more answers:)
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I replied to your post about specific vs general experience…
I don’t know about whether the scar tissue would be less of an issue with a transoral surgery, but it is often a much tougher recovery and there’s more risk of bleeding & infection, as well as the visibility of the styloid being less.
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3 times? Yikes! I would seek out a more experienced ES surgeon. How many is enough? Hard to say. I chose one who had done more than 500. I suggest at least consult even if you have to pay to get scans reviewed by experienced ES surgeon. Sometimes free isn’t always the best route. Just my 2 cents
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Thanks for sharing your 2 cents,
Yeah, you might be right - maybe it’s not worth trying to save around 26.000dollars if that means the surgeon has less experience.
Can I ask who did your surgery?
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well my first styloidectomy was done in 2020 by Samji in San Jose, CA. His approach did not take into full consideration IJV compression or in my opinion my hEDS and propensity for adhesions. Some ES surgeons take the position that when you do a styloidectomy, it decompresses the IJV on its own. Samji takes this approach and does not do C1 shaves either. At the time, he claimed to have done 500+ surgeries. I didn’t know any better back then to look for a surgeon that could address and consider vascular compression in the neck. There is a few on this forum that have had revisions and can support choosing the right surgeon is important.
6 years later, I just had IJV decompression, C1 shave among a bunch of lymph “garbage” that was adhesed to both sides by Hepworth in Denver. I’ve had about 20+ surgeries in my life due to my hEDS. I can tell you experience, due to bad outcomes, I wish I had chosen some different surgeons on a few in my 7 decades of life. This is why I caution you not to choose based on how much it costs and have an surgeon who has not performed the surgery to a high level of experience. I don’t want to be anyones science experiment or a guinea pig.
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