Your situation sounds so difficult Blodyn, I’m so sorry that you’re having all these health issues while needing to concentrate on caring for your partner! It’s good that you can keep some humour, would be impossible without it!
I wish I could give you a definite answer about the risk ES is for you as well as potential CCI & hyoid issues, or recommend the go-to doctor to get these answers, but unfortunately although we have good doctors on our list one wouldn’t be able to cover all 3…Mr Axon is excellent for ES & IJV compression, and does do remote consults, but wouldn’t be able to look at the hyoid for you I don’t think. Mr Higgins also in Cambridge works with Mr Axon at Addenbrooks, but I think both are being restricted to what surgeries they can do on the NHS. Mr Hughes in London has done quite a few surgeries & I think would look at the hyoid bone too as he’s offered to trim the hyoid for a members, but I’m not sure that he’s as knowledgeable about vascular ES. And Mr Timothy in Leeds is more knowledgeable about CCI & does C1 shaves but I don’t think does the ES surgery routinely. So if they could all get together that would cover all bases!
Some members (& I’ve seen some posts on an AI disease forum) have had good results damping down inflammation with the anti-inflammatory diet, I don’t know whether that might help at all for you, I do think ES causes alot of inflammation & that might not help with your RA- but I have to say that the diet sounds utterly miserable! I eat keto which definitely helps some of my aches & pains…
Re the IJV compression I had- I was managing the nerve pain from ES okay, but started doing alot of cycling, & the neck position with that I think caused a prolapsed disc C5-C6. My own theory is that this was enough to shift the structures in the neck & cause the compression, & maybe doing the extra exercise increased the head pressure too. I did start to feel really ill with that before surgery. So I don’t think it was a normal progression of ES causing the vascular symptoms, & I don’t think it necessarily worsens with everyone. But our bodies do lose the elasticity of connective tissue as we age too which is why some get worse.
I’m glad that you feel the forum has been a help; I wish we could solve everyone’s issues but we can’t, always happy to listen though. Will pray for your symptoms to ease & sending you a hug 
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