I’m sorry for your unfortunate diagnosis. I too am a dishie. When you say your background is in open-heart, do you mean professionally? Or personally? I ask because I have had open heart surgery. And part of me wonders if the dish or the hyperparathyroidism that I had , may have caused mu heart valve calcification and having to have ascending aorta repair with graft. My arteries were clear so I did not have to have any bypass. My cardiovascular surgeon told me that when he saw my aorta, he knew I had some kind of connective tissue disorder. Dish is considered a connective tissue disorder. I have a couple bone spurs formations off the spine and many bone spurs up and down the spine. and I have bulging disc toward the spine. I have some stenosis. I currently am a patient of pain management. I have been seen by a spine specialist who doesn’t feel at this point I need surgery yet. Injections at pain management are controlling some things but not 100%. Certain level of pain. The problem with the steroids is you have to worry about bone degradation. I am due for a DEXA scan anyway. I think I had this very young. I had ortho tell me at 40 that my spine looked like that of somebody much older. You may have to have a variety of practitioners helping you. I am actually starting to think about trying acupuncture. Do what you can to Research and my thoughts and prayers are with you.

Hi, your comment about Sacramento caught my eye as I live in Placer County and currently have Kaiser. I am in my late 60s, and after many years of spine problems was told several years ago that my lumbar was starting to fuse (l4/5/S1). Then, a couple of years ago, a spinal surgeon informed me that my entire thoracic region is now fused. None of these medical professionals can tell me why my spine is fusing. All they say is, "it can't be Ankylosing Spondylitis" since the fusing was found so late in life. I was given Accutane in my early 20s and again in my early 50s and my own research has led me to conclude that this is likely the culprit. The Kaiser spine surgeon is unwilling to give me an actual diagnosis of DISH. Not sure why, as I am not seeking to place liability on anyone. I just want to know what the hell is causing my spine to fuse and determine if there is there anything we can do to slow the progression. - "Frustrated in Sacramento"