I’m so sorry too that you have so much going on health-wise for yourself, and then to be looking after your husband too is very hard for you 
There do seem to be quite a few members who have AI diseases alongside ES, so maybe the chronic inflammation ES causes triggers an OTT immune response, just an idea, not that iy solves anything! I have very dry mouth & eyes, my blood tests were negative for Sjogrens & as they’re bearable & I wouldn’t have wanted to take medication anyway I didn’t ever pursue the lip biopsy…
It does sound as if surgery would be really hard for you to manage right now…it’s a tricky one as there are risks to leaving the styloids in, but doesn’t sound like you have much choice! Some members have found that blood thinner meds like plavix, brilinta or xarelto can help with the symptoms of IJV compression, but I’m not sure whether that would help with the ECA compression symptoms…
There have been discussions on here about how correcting posture can sometimes help with ES symptoms, although obviously not a cure, whether there’s much you can do given your other spinal problems I don’t know, but if you have time you could have a look? Here’s a link:
List of my favourite resources on YouTube to learn anatomy - General - Living with Eagle
Sending you hugs and prayer 