Hello everyone! It’s nice to e-meet you. 
I’ve been lurking for a while, reading the messages and seeing how helpful this community is, and I was hoping to ask for help too if that’s ok. I currently have a private appointment booked with Dr Axon.
I’m so sorry to hear about the challenges you’ve been facing for so long. I completely understand how difficult it must be to deal with the combination of brain fog, head pressure, memory issues, and the inability to enjoy things like driving, reading, or even watching TV. I experience very similar symptoms, and I know just how debilitating they are. It’s not often I come across someone with such severe cognitive issues, and my heart goes out to you. I am using voice to text mode on chatgpt to write this out fyi, as I find thinking/writing much more mentally taxing. So if you haven’t already got it, I’d highly recommend trialling Chatgpt for a month to get a feel for it and how it can help you with day to day tasks.
Regarding the sensation of water rushing in your right ear, this sounds like it could be related to either a spinal leak. Regarding the pulsatile tinnitus, this is much more likely the venous sinus stenosis. Pulsatile tinnitus is often associated with venous sinus issues, although it’s deemed the common cause, it’s defo not the only one. If your head pressure worsens the brain fog, that might also suggest a venous component. I’d encourage you to seek out specialists (like Dr Axon) who have extensive experience with these diffuse conditions. Unfortunately, most ENT’s, neuroradiologist, neurologists and neurosurgeons do not have the necessary expertise in complex cases like this, particularly when disorders like EDS (Ehlers-Danlos Syndrome), chronic fatigue syndrome, or vascular Eagle syndrome are potential factors.
Regarding Craniocervical Instability (CCI)
Bare in mind I’m projecting my own experience here, but I’d approach the CCI route with extreme caution unless you have very clear signs of instability. It’s a deep and often complicated area to explore, and for many people, it’s not the primary issue. If instability is suspected, make sure there’s very strong evidence before pursuing interventions. Try not to get too pulled into the group think from these CCI communities that UK surgeons, etc are either too cowardly or behind with the science to diagnose these conditions compared to the US.
Advice for Dr. Axon
When consulting with Dr. Axon, I recommend focusing on symptoms that align most closely with venous sinus stenosis and vascular Eagle syndrome. Keep your list concise—perhaps your top 10 most debilitating symptoms, as physicians get overwhelmed. Pulsatile tinnitus is an obvious key one to emphasise to him since it’s an area of his expertise, along with symptoms that suggest classic Eagle syndrome (e.g., pain while swallowing, neck or jaw discomfort, or pressure changes in the head). The CT venogram with a venous phase is indeed the gold standard for diagnosing vascular Eagle syndrome and assessing the degree of venous involvement.
Understanding Your Pulsatile Tinnitus
Try to document how your pulsatile tinnitus behaves:
• When is it worse? (e.g., mornings, evenings, or when lying down)
• What makes it better or worse? (e.g., changes in head position, pressure on the neck, or certain postures)
• Is it one or both ears? How does it sound? (e.g., rhythmic, whooshing, or pulsating)
This detailed tracking I imagine will help Dr Axon get a sense of exactly what you’re experiencing more efficiently.
One important question I would strongly advise asking once you’ve had your CTV is to ask whether the jugular stenosis (if of course you have it), is if it is being caused more by your styloid or C1 tp. - and from that point forward you’ll have a better idea of what surgeon you should go to, whether that’s Dr Timothy in Leeds, he focuses more on the C1 or Dr Hughes in London who focuses more on the styloid. For some though, both of these structures can play equal parts in compressing the vein. Best of luck with it all!
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Hi @jimjammer123 - thank you so much for your incredibly helpful reply. I’m really sorry to hear that you experience such terrible brain fog too. Have you managed to get any help with your symptoms at all?
I did wonder about a CSF leak (why not add that to the party too?! 
) so will look into this. From my (non-medical) understanding, it seems like high pressure can cause leaks - particularly if you have some types of EDS.
Thanks for the information about CCI and how to best prep for my appointment for Dr Axon (including documenting the pulsatile tinnitus). I’m still new to this (and my brain is so foggy) so the question about what is causing the jugular stenosis (if it’s there) is really helpful!
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I’m so sorry that you have such extreme symptoms from the potential ES, & the POTS & CCI! I did start to feel pretty ill myself from ES & IJV compression, with the off-balance feeling, head & ear pressure, brain fog etc. but nowhere near as bad as your symptoms are…
I’m really glad you’re able to see Mr Axon privately, as @jimjammer123 said, he is an expert with pulsatile tinnitus & has done lots of research into this, so definitely mention this symptom to him. He did both my surgeries; I did have pulsatile tinnitus although it didn’t irritate me too much, I mentioned this by chance at my first appointment & he got very interested then! He will say what scans he wants you to have done, & generally likes them done in a certain way, so leave that to him; a CT with contrast will probably be needed though.
With your symptoms, VES can definitely cause IH, & quite a few of your symptoms could be due to that; I presume you’ve had a read up of that? If not whooshers.com is quite a helpful site… The vagus nerve is commonly affected by the styloids, so can cause digestive issues, and possibly breathing issues. And burning mouth is quite a common symptom with ES, as well as sore throats. The spinal accessory nerve can also be affected which can cause shoulder pain, & also arm weakness. There’s deeper info about which nerves can be affected in the Newbies Guide Section 
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
@jimjammer123 's idea about the rush of fluid in your ear could be right, my first thought was that it could otherwise have been a nerve sensation, as some members have found that their ears feel wet (but aren’t) or like they have cold water in their ear, which could be the glossopharyngeal nerve. If it was a CSF leak, quite a few members have had these, & sometimes get clear fluid drain from their noses, the high pressure can cause a leak & some people cycle between high pressure, CSF leaks & then low pressure before it builds again…
There have been a few discussions about the best places in the UK for CCI you could have a read about, I don’t know too much about this…
The styloids can sometimes be seen on a panoramic x-ray, yes, but they’re not always clear, & wouldn’t show VES at all. As this would be more radiation I wouldn’t worry about having this done… I think other members have had venous sinus stenosis & VES too.
After my first surgery I did feel loads better, & the worst of the vascular symptoms went away, although my situation wasn’t as complicated as yours! Mr Axon is an excellent surgeon though…
I think that’s most of your questions answered! I hope you’re able to read up a bit without aggravating your head pressure 
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Thank you @Jules! It’s incredible how knowledgable people are here. This is so useful.
I have heard of whooshers.com but not visited it - I will have a look!
About the potential CSF leak - I occasionally get clear runny fluid from my nose, but it’s not very much and it’s pretty infrequent. So I’m not sure if something else is causing it! I do get the clear snot the morning after over-exertion but I don’t think it’s runny enough to be CSF.
Thanks again for your really helpful reply! And I’m glad you were able to feel much better after your surgery 
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@ClearSky - Another indication of CSF leak is the fluid that leaks has a metallic taste to it. If your snot tastes salty & metallic, it could contain CSF. CSF fluid can also drain down the back of the throat, again, it would have a metallic flavor.
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Hi !
I have ES vascular too as said on my last CT (not very long styloid but irritating the jugular vein compressed beetween atlas and styloid) and I have the same throat symptoms (pressure, sore throat when i talk and sometimes in the tongue only left side like something is stuck)
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That’s really helpful to know! Thank you
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I’m sorry to hear you’re dealing with symptoms too 
Thanks for letting me know about how you experience the throat issues though, it’s really helpful.
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Thanks everyone for your help so far! 
I had another question about the throat/neck pain that can be caused by ES if that’s ok. I get pain at the back of my throat, under my tongue, back of my neck etc… but does anyone get issues with pain at the front of their neck?
I sometimes get pain on the right hand side of the front of my neck - but not sure if ES can cause issues here!
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Yes, it can cause issues at the front of the neck too, especially if the stylo-hyoid ligaments are calcified too; they can press on nerves in that area, occasionally irritate the carotid artery, if the ligaments are very calcified they can also cause tension with the hyoid bone, and also the hyoid bone processes can be elongated too which can cause pain. It seems to be quite common to have enlarged lymph nodes which can also be tender in that area- presumably because of the inflammation the styloids cause…
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I had pain at the front & front side of my neck. It was the symptom that led to me to find a doctor for a diagnosis.
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@ClearSky
I also have pain at the front and side of my neck.
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I’ve had so many doctors physically look for papilledema but not find it, The radiologist did not see any signs of it either. When I looked at my own MRIs I could see many signs of papilledema on them. Here is some data and what I wrote the neuro-optomologist and radiologists to have my records show more correct data.
Papilledema : “What the radiologist needs to know”
What I sent to my Dr…
papilledemaquestoins.pdf (692.7 KB)
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Thank you very much for this