Yes, waiting is very frustrating & stressful, I’m sorry that it’s all taking d=so long for you 
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Not sure if you can read this and would love your thoughts please. 
Symptoms still the same and it seems back to the drawing board.
Was this from Mr Axon before he went away, or did Dr Osborne manage to get your scans? I’m sorry that he doesn’t feel you’re on the right track with ES & this causing your symptoms, it would’ve been nice to have had an answer! The styloid lengths he’s measured are average, actually less than maybe average, although we do see on here it’s not always the length which can cause symptoms, but the angle & thickness too. Looking at the images ourselves they appear longer than that so I don’t know 
However if there was any compression of the IJV between the styloid & C1 then he’s thorough enough to have seen this…it sounds as if there is some compression just with the C1 process but that this is being compensated for with a collateral vein… We mentioned earlier in the discussion that your hyoid bone processes look elongated- as Mr Axon is a skull base surgeon he probably wouldn’t have looked at those, so whether you think this is still something worth looking into is up to you… obviously we’re not doctors so it’s just an amateur opinion!
So what next? This is so tough for you, all I can think of is asking whether Dr Osborne looks at the hyoid bone, & asking his opinion on that, or seeing of one of the US doctors who does hyoid surgery would look at your scan, like Dr Dewan. Otherwise some UK members have sent scans to Kjetil Larsen at MSK Neurology for review, as he is very good at spotting things that radiologists often miss, here’s a link:
Home - MSK Neurology
If you could rule Hyoid bone syndrome in or out then that might be a next step forward, although obviously there’s a cost involved…
I’m so sorry again that you’ve drawn a dead end, but I guess that’s better than a doctor agreeing to do surgery and knowing it probably wouldn’t help…hugs to you
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Thank you so much @Jules for your response.
It was from Mr Axons secretary this morning.
What has totally thrown me is the CBCT scan results from the US clearly stated 4.2 and 4 for the styloids and this was over a year ago . I am baffled how this large error difference can occur.
The only thing I can think of is CBCT was upright and CTA lying down.
I have hEDS so trying to think of this is a component.
I think he dismissed the compression with C1 however my pain management consultant pressed on the exact spot behind my ear and I had a vertigo spin and my symptoms are on head rotation also among all the others.
Apparently the larger vein doesn’t always compensate and with hEDS this can be the case ( just used ChatGPT to see if it could be an issue ).
I wonder if anyone else has had a similar experience on here … it’s such a challenge trying to figure this one out with so many symptoms.
There was someone here that put up a response to my post and they were dealing with Mr Axon and recently had surgery for C1 if I can remember. I just cant find the name and original message🫣.
Thank you again for the support .
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@Evey - I’m so sorry for the discouraging answer Mr. Axon gave you. I, too, am baffled that he measured your styloids as so much shorter than what you learned from your CBCT scan though CBCTs don’t provide imaging that’s as accurate as a CT scan does. The more normal situation we see on here is that during surgery, styloids are often longer than measured in the diagnostic CT.
You’ve posed an interesting idea about one scan being done upright & one done supine. I wouldn’t think, even w/ the differing perspectives, that the styloid measurements would vary that much. It’s also hard to know whether the hEDS is playing into how your styloids appear in a scan.
I can totally agree w/ this statement as most of us who’ve had IJV compression have had large collateral veins develop to compensate but they certainly don’t work as well as the IJV itself as people still end up w/ the terrible vascular symptoms we associate w/ IJV compression in spite of them. I’m sorry Mr. Axon’s experience doesn’t include that view.
I see you found that @Warrick was the member you were looking for who responded to your post.
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Thank you so much @Isaiah_40_31 for your response.
I too am baffled and to be honest am losing faith in radiology as I previously was diagnosed with a frontal lobe brain meningioma to be told a year later that I reacted unusually to contrast and it wasn’t as they thought.
I don’t know if I understood the letter properly as he mentions narrowing of the IJV and the transverse C1 …. Is this considered compression or does it have to show a lot more as my symptoms are so similar.
I haven’t had a conversation with Mr Axon to ask any questions so it is frustrating to be communicating in this way and having paid quite a large amount I would like to ask some questions.
Not sure if you have any thoughts on this.
Again thank you and I am really trying to stay positive even though today it has been a challenge.
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Had the same issue with the guy. Does not believe I have vascular ES and says collaterals can do the job. But aren’t the collaterals swollen when the ijv is not working properly? Mine are in the left side of my head which is where the ijv has issues.
I have a feeling this doctor does not wish to operate for ES anymore.
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@Evey - I think it’s underhanded if Mr. Axon intends the note you received from his secretary today to be the end of the conversation when he’s charged you a lot of $. A face to face, or at the very least a telehealth, conversation needs to follow so you can ask questions & get answers. No one should be charged for a one way conversation of that sort.
I believe from all the imaging I’ve looked at on this forum over years that when the IJV is compressed between the styloid & C1, & compression symptoms are present, decompression of the IJV is necessary to relieve the symptoms. We’ve had members who were diagnosed with as little as 40-50% closure of their IJVs yet they were miserably symptomatic & were offered surgery. Thus, I cannot understand how a surgeon who’s got as much as experience as Mr. Axon would dismiss what he sees in your scans as not the cause of your symptoms.
Please continue your quest to get an accurate diagnosis. @Jules gave you a good suggestion in following up w/ Kjetil Larsen.
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@markp that’s interesting to hear your experience. I sent all my file notes to him ahead of the tele consultation a few weeks ago and I know he hadn’t read them properly as before he ever looked at my scan he said i didn’t have true ES symptoms and doubted I had ES.
I have hEDS and that wasn’t even mentioned which in my mind is a very big consideration.
I think I had built myself up that he would have all the answers !!
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@Isaiah_40_31 thank you again for your support.
It didn’t mention having a consultation at the end of the letter just his findings.
I find this all so confusing as the CTA report from the original radiologist mentions prominent styloids which I would assume wouldn’t have been mentioned if they were unremarkable.
I am wondering could the narrowing he mentions relating to C1 be considered compression. I just don’t get the terminology and he also mentions something about the transverse venous sinus being ok as such but again I’m not sure what this means.
@Jules thank you for MSK details I read about it earlier and need to go over it again to see what information is needed.
Thank you all again and I’ll need to sleep on it and decide the next step
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@Evey, one of our new members, @wade, just posted a summary of his consult w/ Dr. Osborne. During the visit, Dr. Osborne said this - “…some people might have a really long styloid but no symptoms, while another might have a 5mm styloid and be in agony. He said 5 mm does not sound like much, but if you pass a 5mm stone through your kidney it might feel like a fist sized rock.” This is further confirmation of what I said above about your styloid lengths.
Narrowing = compression. He just didn’t use the same term we do here. A compressed blood vessel is a narrowed blood vessel. In some cases, people have compression of the sigmoid or transverse sinuses, too, which are what the IJV becomes up inside the skull. The fact that yours are ok is GREAT news!
Here’s a picture from the back showing the transverse sinuses becoming the sagittal sinus;
Transverse & Sagittal Sinuses.pdf (5.3 MB)
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Thanks again @Isaiah_40_31 for sharing this information and I have just sent a message to @wade .
I think perhaps I should go with my gut for an opinion from Dr Osborne.
He might also have an opinion regarding the hyoid as the lump swallowing and the choking and clicking need to be addressed also.
Many thanks again
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@Evey & @markp , Mr Axon has recently done surgery (styloidectomy & C1 shave) for warrick & another member, both privately, so he is still doing surgery. All I can think of is that maybe he’ll only do surgeries if he feels there’s a very good chance of it being successful, so perhaps with some members who have several other conditions going on, like other neck problems, CCI or EDS , the surgery might be one of several treatments which are needed, so perhaps he doesn’t want to do surgery then? Only a guess, but with the world we live in where people can be quick to complain if a surgery doesn’t make a big difference, I guess it’s understandable that a doctor might be more unwilling to operate?
But I do think you should push for a phone or in person appointment to discuss Mr Axon’s thoughts @Evey ; maybe he wanted to get you a response before he went away? If you do speak to Dr Osborne, I would definitely ask about your hyoid, as you want to make sure you’re having the right surgery…
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Thank you again @Jules . I agree you as with having EDS and so many other issues i would really want to be 100% sure and I am very concious of anything that could make my neck instability worse. I really need to get this right.
I don’t know if you can recall anyone sending files online to Dr Osborne as I would love to get them to him fast as they said to me he would do the tele health call pretty fast once he has the scan.
I tried sending them but they contacted me to say they couldn’t open them. Such a pity .
I think everything I have going on is all connected and it’s just trying to find the right help now🤞
Thanks again everyone has been so kind with their time
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I hope that the tutorial @wade gave you a link to helps with your scans 
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