Did I Have Enough Surgery?
Most people don’t worry about having enough surgeries. But I have reached the point of four decades of accumulative, aggressive joint damage from rheumatoid arthritis and I wonder: “Did I intervene enough? Should I have had more surgeries?”
My first surgeries:knee and hip replacement
I was age 15 when I had both my knees and hips replaced in a single year. At that time joint replacements were fairly new and it was unusual for someone so young to have them. It was not a decision taken lightly. I was in bad shape with a lot of pain, such that sleep was difficult. My mobility was severely impaired and very challenging. Sometimes I had to use a wheelchair.
Huge benefits and improvements
While the surgery and recovery were hard, it improved my pain levels (basically erased) and ability to function. For a long time after, I lived with huge benefits from these joint replacement surgeries.
Even now, more than 25 years later my knees and hips are not the joints that bother me. Sure, the weakness in my legs bother me, but not the joint replacements. It’s all my other joints that are a problem: my ankles, shoulders, elbows, neck, wrists, fingers, and toes (though I don’t care much about them in comparison to my other joints). I have pain, stiffness, severely limited range of motion, and lack of strength in every other joint in my body.
So, I wonder, should I have had more surgeries and joint replacements?
The best time to have surgery
When I was younger and had less joint damage (though I feel like since childhood my damage has been significant), it was the best time to have joint replacement surgeries. They are more effective when you still have some strength and range of motion. My hips and knees are imperfect replacements because of previous damage to the range and soft tissues. There was only such much mobility that my body could adjust to and regain.
Was more surgery at that time a good idea?
But unfortunately, when I was younger, joint replacements were new and the hips and knees were the best yet developed. Other replacements were not as advanced and often failed quickly. I could also argue that I had my hands full recovering from knee and hip replacements, anyway. Additional surgeries would have delayed my education. Would it have been worth pausing my life and going through painful surgeries that may not have succeeded at the time?
Advancements in joint replacement surgery
I asked my orthopedic surgeon about the possibility of more replacements and he said they have improved greatly over the years. My understanding is that other joint surgeries have gotten better and last longer. In my 20s, I was told I should have had hand surgeries, but that I would be unable to use the hand for months during recovery. I was also told that it would be likely my hands would go back to their previous state in a number of years. Things have changed and now there are more options, that are more successful.
Advancing RA brings less opportunities or options for surgery
Sometimes I ponder whether I should do surgeries now. My motion is very limited. Would surgeries help? I tend to believe that I’d be limited by my tight soft tissues. They’ve adapted to my body and may not be able to adjust to a new, functioning joint however I may dream.
The best reason for surgery may be pain management. It may help my overall pain level to say farewell to the worst aching joints. But I fear losing the abilities that I do have during the process. Not to mention that my bones are so small and weakened by the RA that I may have difficulty healing and recovering properly.
No surgery and living with what I’ve got
It’s funny, but the limited motion and contractions from my RA don’t usually bother me. I’m used to it and have learned to work around the limits of my joints. It’s the pain and fatigue that may be the worst. I’m not sure that surgeries at this point can help me much unless I have a crisis that requires it (like a joint infection). I don’t see my range of motion improving and sometimes my worst pain isn’t in my joints but running through the length of my bones—which no replacement can touch.
Leaving my joints as they are
If I were younger and earlier in my disease, I would have different thoughts on surgery. There are some really great options now for joint replacements. I’m glad that these developments have come about to help other patients with rheumatoid arthritis. But for me, I’m going to keep my old creaky joints as long as I possibly can.
Did you have difficulty receiving a RA diagnosis?