I’m sorry that you’re in so much pain! We’ve had other members who’ve got unilateral enlarged SCM muscle, so you can search out those discussions, if I remember right it was possibly linked to a shoulder injury as well as possibly ES, so this might be another rabbit hole? Here’s a couple of discussions which might be worth a read:
Birth trauma causing vascular outflow obstruction - General / Eagle Syndrome Stories - Living with Eagle
9months Post-op - help! - Symptoms and Treatments - Living with Eagle
Botox/ PT/ myofascial release massage might all be worth a try for you for that muscle?
When you had imaging done for your possible IJV compression, were collateral veins noticed at all? We see quite often that if there is a bit of compression that veins at the back of the head swell to take the blood flow, and many members have had pain from these in the area you have pain. (If you have the images feel free to post them on here- we have had some members whose images only show mild compression, but they’re very symptomatic).
Feeling like your head might crush your neck is symptom mentioned with Chiari malformation, but I would presume somebody would’ve picked that up on your MRIs by now? The same with CCI?
Normally we’d suggest that someone sees one of the experienced VES doctors, but I presume that you’ve seen at least one of them? (Dr Hepworth, Dr Nakaji, Dr Costantino or Dr Cognetti?)
I wish there was something I could suggest to help you , maybe others can suggest where you go from here, but it would be interesting to see any CT you have.
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