Good observations, @Lababila - especially your comment about extra muscle tension in the neck causing ES symptoms to flare. Definitely makes good sense.
Good evening all.
Today I received the report from my CT venogram, reported by Dr Higgins.
It stated:
The intracranial venous sinuses appear patent. Both lateral sinuses are about equal in size,
although neither transverse sinus is particularly generous. The sigmoid sinuses appear
unremarkable.
There is very marked narrowing of both jugular veins between the styloid processes of the
skull and the transverse processes of the C1 vertebra. There is also quite marked smooth
narrowing of the internal jugular veins more inferiorly behind the sternomastoid muscles at
about the C6 level.
Dr Axon then added:
As mentioned in my last letter, this is not a hard sign for raised intracranial pressure, especially as
there is no evidence of raised pressure on intracranial imaging.
I do not believe Mr Axon will be willing to offer treatment for this, as it appears his position is that despite the evidence of narrowing of the veins, and my symptomatology, there is no sign of a problem.
I will now be looking to alternative surgeons for an opinion on whether they feel surgery will be beneficial. I would value any opinions on this.
As I see it currently my only real options are
Dr J Hughes, it appears to me he would likely operate to remove the Styloids, but unsure whether he would do a C1 shave if indicated from the scans.
Dr Timothy, who will likely only do a C1 shave and not remove the Styloids!
I do not know whether there are any other options? Preferably I would see a surgeon open to both options and having the capability to do whichever is most apparent during the surgery itself.
I have not yet received the scans themself. A word or advice to anyone getting scans done at spire hospitals, they will give you a copy of your scans on the day and time of your scan if you expressly request it there and then. But as soon as you leave, you then have to make the request via the medical records department who takes up to 30 days to action your request and are very difficult to contact! Not great service when paying high prices to go private!
I would value any thoughts on the impact of the sternomastoid muscle, and any therapies which may alleviate this. I have read that myectomy is an option ( essentially removing part of the muscle). But wonder if physiotherapy may assist here?
Thanks all
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That’s so frustrating getting a report like you have & Mr Axon still being unwilling to operate! I wish I could give you an answer about who’s best to see but as you say neither Mr Timothy nor Mr Hughes would likely do the styloid & the C1 shave; we’re a bit stuffed in the UK! @KoolDude has had styloids removed, and then a C1 shave with Mr Timothy but is still having some issues, you could message him about his surgery experience…
@vdm has posted lots of info & links about neck, shoulder and back muscles and how posture can affect them, with links to pt videos which you might find helpful, have a look at this discussion:
Thinking of you 
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Hi what is ivj?
Perhaps a typo… iJV is used to refer to internal jugular veins though
Hello Warrick
I have just read back on your posts as I just got an appointment for tomorrow for Dr Axon and reading your information I’m concerned.
I see the criteria are quite defined.
I am doing a video consultation and I really want to get the most from this appointment.
If you had any suggestions I would be very grateful.
Many thanks
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Hey, I hope all goes well with your appointment.
So Dr Axon just operated on me last week actually, to resect my C1.
When I saw him in 202 he was very much focussed on pulsatile tinnitus and true eagles syndrome symptoms, but I think that has changed slightly more recently and he is recognising jugular compression more, although he doesn’t seem to talk about it much, he did agree to operate on me for this, so that’s a positive step.
What are your symptoms? What are you hoping to get from Axon?
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That’s good to hear you had surgery @Warrick , how are you feeling?
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In the height of inflammation I think. It’s been 6 days so I think it’s around the peak? So I’m feeling worse than pre surgery in terms of head pressure dizziness etc.
Hoping to see some improvement soon as the swelling eases off!! Surgery went well though with no complications at all and not even numbness or first bite syndrome so quite pleased in that regard!
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Thanks so much and I do hope you are recovering well after surgery.
I am 10 years looking for answers until styloids were found last year.
My symptoms are so many but just a few are chronic migraine, Head fullness no space in my head . Ear fullness and pulsitile tinnitus, near fainting upon turning my head in a certain way, chronic dizziness/ vertigo and motion sickness.
Shoulder pain, choking sensation when gargling and same lying flat. Clicking noise front throat when swallowing . Chronic fatigue and sudden spells of near fainting and have to lie down. So many more!
I do hope tomorrow I learn a bit more and perhaps finally close this chapter of the last tough 10 years.
What is a C1 shave? I do see this mentioned with styloid removal and not sure what it entails.
Thanks again and I do hope you recover well now .
C1 shave/ resection is the removal of a part of the C1 vertebra, which sits behind the styloids. The transverse process was removed for me, this is like the wing tips of the C1. This was because my Jugular veins were completely compressed by it. I had a styloidectomy first, but my symptoms didn’t improve and the vein was still compressed, hence the decision to do a C1 shave.
I think Axon will be useful for you. Have you had a CT Venogram of the neck? This will show if you have jugular compression, or if your Styloids are particularly large / angled etc and possibly the cause of your symptoms.
Good luck with everything.
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Yes, pretty much the peak of swelling, I hope that it settles down for you soon… 
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Thanks Warrick for all the information.
The virtual appointment yesterday with Mr Axon was cut short as he wanted to look at my scans properly and trying to do it via the screen sharing was probably frustrating and slow and he wanted to strip it back a bit.
I’ve posted the disc today and dont know if they can access this.
Based on my symptoms he didn’t feel it was ES he described true ES as stabbing pain.
He mentioned the transverse process which is where my pain radiates.
How is the recovery process going for you?
He is quite set in his ways about eagles syndrome. But if he is mentioning the transverse process that’s a good sign that he might suspect you of having jugular vein compression. He treats it as a very different diagnosis to eagles syndrome so it can get quite confused, as lots of people use eagles / vascular eagles as a term for jugular vein compression, but actually the jugular can be compressed by the C1 transverse process and therefore have nothing to do with the Styloids, or indeed can be compressed by the Styloids, and therefore arguably could be called vascular eagles syndrome.
Your symptoms do sound like vascular compression, rather than classic eagles, so I would hope he will look into your scans to see if you have compression of the jugular vein. Have you had a CT Venogram?
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@Warrick thank you so much for this information and for this explanation.
To be honest I was just deflated that I would have to go trying to find the next place to try and work out what is causing this.
I really didn’t say much in fact I hardly spoke. I had sent everything in on email - symptoms etc and I hadn’t put them in order and he asked me to list the top symptoms which with brain fog I was barely making sense!
My symptoms are so many now. Is the vagus nerve effected with all this too?
Were you able to see your own scans before meeting Mr Axon as I know some people convert them to 3D and are able to figure it out.
Thanks again and I do hope you are doing as best can be expected after surgery.
@Warrick apologies I had CTA not CTV but he said he will hopefully be able to work with this 
@Evey , I didn’t ever have the stabbing pains with ES, I had nerve pain from the styloids but it was a constant aching… Head pressure is an important symptom with IJV compression, pulsatile tinnitus, off balance feeling and brain fog…
The CTA is a scan with contrast timed to see the arteries, quite often they take images as the contrast goes through the veins as well so hopefully your veins might show on the imaging, it would be interesting to see your arteries though as well as you’ve had near fainting episodes which can be caused by compression of the arteries.
The vagus nerve can be irritated with ES too, that can cause heart arrythmias, digestive issues, anxiety etc - there’s info in the Newbies Guide Section common symptoms & possible explanations.
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It can be quite intimidating and difficult to say everything you want to say!
Yes I had my scans to look at myself as it’s helpful to already have good idea of what they show before hand. If you don’t I recommend you get hold of them and view them yourself.
Do you know what kind of scans you have?
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@Jules thanks so much for the support really appreciate it especially trying to navigate this and really finding it all hard to understand as I am so brain fogged.
Hopefully the CTA might have picked up the veins even though the report said everything was normal with the carotid etc. I have heard that sometimes things are missed on scans .
I have a lump in my throat and a clicking sound when swallowing depending on the position I am in ….could this be linked I wonder ?
Thanks again so much 
@Warrick thanks so much .
The scan was given to me on a disc and my husband got it downloaded onto a usb stick. I can see the images but I honestly don’t know what I am looking at🫣
I’d love to convert it to the 3D people mention as I’d say it is easier to work out .
How did you view your scans?