During that period, my neck pain improved somewhat, and I had more range of motion and slept better. One day at work, I was eating with my appliance in, and when I bit down, I heard and felt it crack loudly. It split down the middle, and I felt my teeth touch for the first time in years. I panicked, called my TMJ clinic, and asked if I should drive there immediately to fix this “emergency.” I was shocked when they said they couldn’t get me in for three weeks. These were the same people who stressed so hard how important it was to never let my teeth touch, yet suddenly it was okay for three weeks? WTF?? Once I got that message, I just removed the appliance. To my shock, there was zero jaw pain, and it felt so good to be able to eat normally again. I decided to stop wearing the nighttime appliance as well, and again I was shocked to see that for the first time in years, the inflammation did not return to my jaw.

Once Enbrel started losing effectiveness, we tried other medications, including Humira, Cosentyx, Xeljanz, Otezla, and more. The jaw pain never came back, but the extreme neck pain took its place, and by all accounts it was just as bad or worse. At this point, not only was I scared to remain on these medications, but I was also frightened that I was still getting worse. I demanded a referral to the Mayo Clinic, hoping they would properly diagnose me and provide a cure or at least better guidance. After several days of tests there, I was disheartened to hear the rheumatologist assigned to me say—while dictating into his mic—“I am at a disadvantage because this patient comes with a prior diagnosis of ankylosing spondylitis.” He then said he was going to stick with that diagnosis simply because out of the plethora of labs, scans, etc., it did show sacroiliitis, which is a key symptom of ankylosing spondylitis… but can also be present in many other diseases. Somewhat frustrated and hopeless, I left the Mayo Clinic defeated. At the very least, he didn’t say I didn’t have AS, so I decided to accept that diagnosis and do everything in my power to keep being compliant and trust the process.

My neck pain and stiffness continued to worsen, eventually reaching a point where I couldn’t turn my head at all. I was extremely inflamed, swollen, fatigued, and, in hindsight, definitely depressed (though I would have told you I was “fine” at the time). Eventually—probably at least five more years later—I was seeing my new PCP, a nurse practitioner. After refilling my Flonase and Xyzal, she asked if there was anything else she could do for me. Somewhat jokingly, I told her that if she could do something about my neck pain, I’d buy her 12 steak dinners. She suggested we do new imaging (X-ray, MRI, CT) to see if anything appeared this time. I told her I had done all of those dozens of times over the years and they always came back “clean.” She insisted we try again, and I agreed.

Within a couple of days, my phone rang from a local number I didn’t recognize. When I answered, it was her, calling from her personal cell due to the urgency of the message. She said, “Hey, I don’t want to scare you, and I’m far from a radiologist… but even I can see that you have ‘significant erosion’ at your C1 and C2 joints.” She explained that this was concerning because they seemed to be thinning and could become so brittle they might fracture. She also explained that a fracture in that area would affect everything below it, and C3 is required for respiration… so I could die if that happened. She told me she had urgently referred me to a neurosurgeon and that I needed to refrain from roughhousing, contact sports, or any blow to the head. Needless to say, my whole world was on fire at this point.

I called my wife immediately and told her the news, and all we could do was pray that God would somehow perform a miracle. After seeing the neurosurgeon, he confirmed on new scans that I didindeed have significant erosion but explained that there weren’t many good options because of its location. The surgery required to repair it would be extremely invasive, and I would lose about 90% of my up/down/left/right range of motion, since these joints allow and control those movements. There were also no branching nerves to ablate, so a nerve block test would be useless—he couldn’t ablate my central spinal cord nerve. He told me that normally the body tries to fuse such joints on its own, but it was strange that mine were eroding instead. He said the best option was to watch and wait to see if it got so bad that surgery was the only remaining choice.