I have the same issue with my lumbar spine. No fusion but basically no movement. When I bend down to touch my toes, I bend from my thoracic spine. My lumbar spine stays flat and just doesn't bend. Apparently, that is a feature of AS. There's not really anything I can do about it except keep up with PT. PT hasn't actually increased my mobility but helps with the pain.
Since besides PT there is nothing I can do, I figure no point in worrying about it!
Have you tried PT for your neck? Or trigger point injections? Those helped me a lot with pain.
seymour, do you have radiographic evidence of sacroiliitis on your x-rays? Erosions, sclerosis etc.? Because if you don't, then you don't actually have AS, you have axial spondyloarthritis. Many people with axial spondyloarthritis NEVER progress to AS. I can't remember what percentage - let me see if I can find it.
Just wondering...figured if it is non-radiographic axial SpA, that might ease your worries about fusion!
I also want to add that my dad does have fusion in his neck. He also has fully fused SI joints and has had many hip replacements, starting at 32 (or maybe 34, I can't remember). He works full time, travels for work a lot, gardens and lives a full life. His philosophy is to just ignore the AS and live his life. I'm not saying anyone should ignore their AS - they should certainly see their rheumatologists regularly and stay on their medications and stretch and exercise. But there is no point focusing all your energy on what might happen.
But I've learned to focus on what I can do vs. what I cannot do. I'm a twin and have not graduated from college yet. My twin is healthy and has graduated from college and is working full time. I have AS and inflammatory bowel disease and a number of other conditions. I've had to take 2.5 years off from college to get my health under control. It's hard. And it's not fair. But it is what it is. And I try my best not to dwell on it.