Exploring the Option of Surgery
All of the times I have had surgery, it never felt optional. It always felt like something I needed to do to either maintain quality of life or to survive serious illness.
I'm no stranger to surgery
When I was a teenager, I had both hips and knees replaced so that I could greatly reduce my daily pain and improve my mobility and energy to be able to go to college and start an adult life. When my left knee became infected more than 20 years later, I had surgery to remove it and replace it because I couldn’t live with an infection roiling my body. Although theoretically, these were optional or elective surgeries (aside from the infected knee), they really weren’t for my well-being.
I've avoided many procedures
Still, compared to many people with rheumatoid arthritis (especially childhood-onset) I have had a lot fewer surgeries. I could have had hand surgeries, feet or ankle surgeries, elbow or shoulder surgeries, neck fusions, and so forth. Any or all of these could have helped me along the way with my joint mobility and chronic pain. I kept avoiding them and have to wonder if I should have endeavored more surgeries.
In the last few years, my neck and shoulder have given me more pain and I have noticed significantly reduced joint motion. I was afraid to explore options, but with encouragement and a referral, I met with an orthopedic surgeon who specializes in this area.
Starting to research shoulder surgery
First, he started with a basic x-ray. Immediately I could see there was pretty much nothing there. Where my shoulder joint should be looks like a rat’s nest. I expected to see tiny beady eyes staring out at me—how else to explain the mess where there are few clear lines of where bones should meet and move?
I appreciated his honesty when he said: “physical therapy is not going to help that.” No amount of exercise or strengthening will compensate for not having a functional joint. The next question: was I willing to consider surgical options? He explained that based on the x-ray he would want to get a CT scan of the joint to obtain more detail on the bone remaining and if a reverse shoulder replacement would be possible.
Taking a deeper look
Off I went to schedule and get the CT scan. It was as easy as a one-minute nap. I laid on a bed, and seconds later it was done. Then I took the disc back to the surgeon and he told me there would be enough bone for a standard ball and a custom socket for a reverse shoulder replacement. I had come prepared with a long list of questions, much of which I had previously researched online, but wanted to hear his specific thoughts about my case.
I asked about surgical risks and additional possible risks because of my health history and length of living with rheumatoid arthritis since age 2. I asked about what I could expect as far as post-recovery motion and strength. I asked about how long I would be in the hospital, how long before I could return to work, and how long the recovery may take. And then I asked for time to think about it.
What risks do I need to consider?
All of my surgeries have been complicated. My bones are tiny and have sustained a lot of damage (juvenile rheumatoid arthritis at age 2 will do that). It’s hard for me to have IVs as my veins are tiny and prone to rolling. I have reduced movement throughout my body, so it’s hard for me to compensate and adapt when a body part is temporarily offline for recovery. And so forth. It’s never been easy. There’s always been unexpected challenges. It’s always taken longer and I’ve needed more help than anticipated. I don’t take the idea of surgery lightly.
As part of my process, I am also consulting with the orthopedic surgeon who did my knee revision and, of course, my rheumatologist. I’m asking them about the specific risks and challenges with my history. I’m also asking if my shoulder will continue to worsen (likely) and if that would make surgery later even more difficult (also likely).
Weighing the factors
In the end, I’ll be weighing all these factors. I’ll be thinking about the hope of reducing my long-term pain and maintaining (or even improving slightly) my range of motion and strength. These possible positive results will be compared to the risks of both the surgery and of doing nothing (or waiting). It’s not an easy calculation, more of an advanced application of imaginary math. But since I have to live with whatever I decide, I’ll have to get it right or at least come to peace with the decision.
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