I’m so sorry that you’ve been avoiding the forum, & I’m sorry that we missed the boat with following up with you, we do try & keep track of members but it does get busy on here…
Unfortunately we’ve seen that only the most experienced doctors have set symptoms that they believe must been seen for you to have ES, & often won’t treat someone for ES without them. Giving them the benefit of the doubt, it could be that if a patient doesn’t get ‘cured’ after surgery, it might make them wary of offering surgery in future in case it happens again? And I know that certainly with the NHS as it is, there are much stricter criteria which have to be seen before he can do surgery.
Don’t feel embarrassed about how you felt after your experience- I think most of us have felt bad after a doctor dismisses you or is skeptical, so we understand…
Do you feel strong enough to see Mr Axon again & to ask for the CT? If you could show him the other tests/ diagnoses you’ve looked into & ruled out, maybe he’ll listen? There has been quite a few research papers about IJV compression, & at least one research paper which mentions the cognitive/ neurological effects, here’s some to have a look at:
IJV compression symptoms - research paper - General / Research Papers - Living with Eagle
FARGEN; HUI et al. (2025) - Cerebral venous outflow revisited: Contemporary insights to simplify a complex disease - General / Research Papers - Living with Eagle
Cerebral Venous-Associated Brain Damage May Lead to Anxiety and Depression - General / Research Papers - Living with Eagle
This article mentions tinnitus with venous congestion, but doesn’t say pulsatile tinnitus:
Cerebral venous congestion alters CNS homeostatic plasticity, evoking tinnitus-like behavior - General / Research Papers - Living with Eagle
There are also some webinars linked on here if you feel up to watching & concentrating on them…
If you don’t think that you can face seeing Mr Axon again, @OMM9420 recently saw a doctor in London who has written a research paper about vascular ES, Mr Paul O’ Flynn We’ve not heard of anyone having surgery with him, but apparently he was Mr Hughes’ mentor…
Here’s a link to the paper, but don’t read it all if you’re squeamish:
The Eagle Has Landed: an unusual case of Eagle’s syndrome - PMC
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