1, 2, 3, Cancellations
I thought I should take some time and send out an update on what’s been happening with my health since publishing Hold Me Close about my then-upcoming reverse shoulder replacement surgery. On January 26th, I woke up at 5 AM, got ready, and called an Uber to bring me to the hospital for my surgery. Just as the Uber was about to pull into the hospital driveway, my phone rang. It was the hospital. My surgery had been cancelled. Apparently, the hospital had been running on generators for two days and was running low on power after an outage affected parts of Montreal. The Uber dropped me off, I walked into the hospital, sat down, and called another Uber to go back home.
A few weeks later, the hospital called again with a new surgery date: March 3rd. So, as I had done in January, I prepared all over again. I began taking the anti-inflammatories and narcotics prescribed by the doctor in advance of surgery. I showered the night before and washed with the special soap they give you during pre-op testing. For the second time, I also reserved a room in a convalescent home for a week-long stay following my discharge from the hospital two days after surgery. Then, on the evening before the operation, I received another “No Caller ID” call. It was the hospital. I assumed they were calling to change the time of the surgery. Nope. They were cancelling again. This time, the surgeon was seriously ill and unable to work. So once again, I exhaled and waited.
Honestly, the pain was a very close second to passing a kidney stone — and I say that as someone who has actually passed kidney stones.
A few weeks later, they gave me a third surgery date: April 30th. But as the weeks passed, I noticed that a pulling sensation and growing tension running down the right side of my neck were worsening. I’d had the pain for about nine months and had simply been living with it, but now things were escalating. About a week before surgery, I tried some gentle stretching exercises to relieve the tension. At first, they actually seemed to help. But the next morning, I woke up almost paralyzed from the neck up with excruciating pain shooting down both sides of my neck. I could barely get out of bed. Honestly, the pain was a very close second to passing a kidney stone — and I say that as someone who has actually passed kidney stones. I somehow managed to get through the day and went to bed, hoping rest would calm things down. It didn’t. I woke up at 2 AM in horrible pain and decided I needed to go to the emergency room. So, once again, I called an Uber.
The Bionicman's Parts Exposed
The ride itself was torture. I felt every crack, pothole, and bump in the road. My neck could barely support the weight of my head, and by the time I arrived at the hospital, I was sitting in the waiting room holding my head in my hands. I waited five hours. I brought along my usual “full body diagram,” the document I take to all new medical appointments that outlines my surgeries and health conditions. Healthcare professionals are always stunned when they see it. The ER nurse even asked me how I had created it. “I’m a graphic designer,” I told her! The document helped move things along more quickly because it instantly conveyed the complexity of my medical history.
The ER doctor was kind and attentive. He ordered a fresh CT scan, tested my blood for inflammation markers — there were none — and prescribed additional Dilaudid along with a muscle relaxant. The CT scan confirmed what a previous scan had already shown: advanced degenerative changes at the atlantoaxial junction, but no definite evidence of instability. While I understand that the latter finding suggests there is no clear instability, my symptoms — especially the constant popping and cracking around C1-C2 — made me feel otherwise.
When I got home, I emailed my shoulder surgeon to explain what was happening. And yes, my shoulder replacement surgery was cancelled for a third time. This time, indirectly, because of me. My surgeon explained that if my neck had already seized up, the surgery and rehab would likely make things significantly worse. He told me many patients underestimate how much neck issues affect shoulder recovery, and that proceeding with surgery while my neck was in crisis would likely leave me unable to tolerate physiotherapy afterward.
Meanwhile, the ER doctor had referred me to physiotherapy and requested a neurosurgical consult. I reached out to my hip surgeon, who works out of the same hospital, hoping he could help fast-track a referral to a spine neurosurgeon. That’s when I learned St. Mary’s Hospital doesn’t actually have neurosurgeons specializing in spinal care. So, out of desperation, I emailed my rheumatologist asking for a referral to see a new neck surgeon at the Jewish General Hospital. The neurosurgeon who performed my C3 to T1 fusion back in 2019 has since moved into private practice, so I had to start from scratch. I sent the referral to the neurosurgery assistant, who initially told me the wait would be two to three months. A few days later, I emailed again, explaining the severity of my situation. As luck would have it, one of their newer surgeons had just opened availability for new patients, and I was seen within a week.
The neurosurgeon reviewed my scans with me and explained that although I have significant arthritis in the atlantoaxial joint, I am not a surgical candidate. He ordered additional X-rays to confirm things, and they again showed no instability. I looked at him and asked, “What exactly am I supposed to do about this pain?” He told me physiotherapy likely wouldn’t help much and suggested I try a drug called Cymbalta. For those unfamiliar with the atlantoaxial joint, it’s actually two joints: where the skull sits on the first vertebra (C1), and where C1 sits on C2. In my case, there is significant arthritis in that region, and because the joint is compromised, the surrounding muscles are constantly spasming in an attempt to stabilize everything. The current goal is simply to calm the neck down enough so that I can eventually undergo shoulder surgery—but will that be possible?
I recently saw my shoulder surgeon again, and he confirmed what I already suspected. If I undergo shoulder replacement surgery while my neck is in crisis, the outcome will likely be poor. I wouldn’t be able to tolerate the rehab exercises properly, and I could end up with an arm that only half works. He now wants me to see an osteopath at his clinic to determine whether targeted neck exercises might help reduce the constant spasms. It’ll cost me $150, but at this point, I’m willing to try almost anything. The physiotherapist I recently saw had absolutely nothing useful to offer me!
The air is heavy, heavy as a truck
I need the rain to wash away my bad luck (U2)
And because apparently the universe felt I needed one more thing, I also injured my acromioclavicular joint — the AC joint — while weightlifting at the gym, doing the exact same exercises I’ve been safely doing for the past nine months. Ironically, the pain from that injury has actually been worse than the pain from the worn-out shoulder itself. My surgeon prescribed three weeks of anti-inflammatories and wants to reassess things in seven weeks. Hopefully, this injury will settle down. The good news — and there is some good news — is that the anti-inflammatories have significantly helped both my AC joint and my neck. So, for the moment at least, I’m enjoying a somewhat reduced level of pain.
What a pain in the neck
Still, this has been one long, exhausting winter and spring. As I write this, my neck is once again pulling and seizing up. I honestly don’t know when — or how — this will eventually get resolved. Truthfully, I’m getting tired. Tired of new problems. Tired of setbacks. Especially tired of hearing bad news about my neck. It’s affecting my morale more than I’d like to admit, and some days I feel pretty beaten down by it all. I just want to be fixed. But I know that won’t happen.
I leave you with the Coldplay song, “Fix You,” about trying to recover when life breaks you down.
Your Friendly Neighbourhood Bionicman
Kelly Hounsell
Courage, Cousin. ( っ´ `)っ