Good old UK NHS! You’ve had long waits & it’s really frustrating…I had bilateral ES & was diagnosed at my local hospital (I now realise how lucky I was!), & was told that the surgery was too risky. Like you I could manage with the symptoms to start with so was okay with that, but by the time I went for the next appt a year later I was starting to get vascular symptoms & it was not bearable any more. Through this so helpful site I found out about Mr Axon at Addenbrooks & asked to be referred to him- the local doctor was very happy to get rid of me & sent off the referral. I found out through a CT with contrast done with Mr Axon that I had bilateral jugular compression & although the wait was a while for surgery I had that done & felt loads better.
Firstly I’d suggest printing off one or 2 research papers which support your symptoms (there’s one written by Mr Axon & Mr Higgins which mentions jugular compression & that might be useful) and taking that along, hopefully the ENT will listen but not always! Here’s a link to that paper:
Dr. Higgins & Dr. Axon : Spontaneous Intracranial Hypotension Complicated by Subdural Effusions Treated by Surgical Relief of Cranial Venous Outflow Obstruction - General / Research Papers - Living with EagleIf they’re not very helpful then I’d suggest asking for a referral to one of the doctors on the list, here’s a link:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
Mr Axon is the most experienced, although a trek for you, but does have a very long waiting list now & does seem to be being restricted on which ES patients he takes on.
I hope that you get some help!
2 Likes