This week I had my second RA surgery, after 13 years of living with severe, unrelenting rheumatoid disease that does not respond to medications other than steroids. I definitely asked my surgeon lots of questions. But, this second time, I knew even better what to expect by what I had learned last time. I hope these Q and A help you decide and prepare if you need RA surgery.
The two RA surgeries this week on my left hand (yes, I’m left-handed): fusion of MP thumb joint (the middle joint of the thumb) and trigger finger release of the middle finger. That’s the one that causes my hand to stay locked into a paw-like position. The surgeon said he actually cleaned out a large amount rheumatoid gunk from my finger.
Before RA surgery
1. Should I get RA surgery now or should I wait?
Only you can decide. My hand / shoulder orthopedist always says, “You’re the captain of this ship.” Generally, he’s very conservative, meaning he waits until surgery is the only option left. He says he really likes my willingness to try everything I can and avoid surgery as much as possible. My knee / hip ortho doc also leaves it up to the patient.
2. Do I stop RA medications for RA surgery?
The disease treatments used in RD / RA reduce immune function, so some doctors pause those DMARDs around the surgery time. They worry that the medications could slow healing. However, I have seen several reports in recent years showing DMARDs can be continued with RA surgery. Stopping DMARDs carries a risk of losing treatment response—DMARDs may not work the same after re-starting.
My only RD / RA medication is steroids (shots and prednisone). I could not have a shot in that hand during the weeks prior to surgery, but otherwise, my medications continued.
After RA surgery
3. How bad does RA surgery hurt?
This will depend on what you have done, but all surgery creates a wound that can be painful. For me, the pain after hand surgery—including inserting titanium screws into the bones—has not been as severe as my RD / RA pain when it is bad. The surgical staff and the anesthesiologist worked hard to keep me comfortable. As the nerve block wore off, my hand hurt; but two days later, it only hurts when I accidentally use it too much. On the other hand, a total joint replacement could obviously hurt for a longer time.
4. How much will RA surgery help?
This is the hardest question—even your doctor can’t promise an answer. Most of the time, a fusion or synovectomy or arthroscopy can bring a good amount of pain relief. But my doctor repeatedly told me two things:
a) “I’m only fixing one joint—all of your other joints still have RA.” It’s true and it seems strange to fix 2 joints out of 200 that need help.
b) “We cannot promise improved function. RA surgery is focused mainly on pain relief.” Of course I can hope for both.
5. Do joints look better after RA surgery?
In addition to pain relief and better function, this would be nice, wouldn’t it? I have looked at surgery photos where badly bent toes or fingers look straighter after surgeries like fusion or joint replacement. But appearance is another thing that my surgeon said he could not guarantee.
Preparing for RA surgery
6. Is there any reason to avoid surgery?
Even after deciding that RA surgery is a good option, there is still your overall health and disease progression to consider. Your surgeon should be informed about all aspects of your health and the ways RD affects you. This will give her / him a good idea of how well you can handle the surgery and heal afterwards.
If you have very active rheumatoid disease, it will continue to progress despite surgery. This is actually the reason my surgeon has not cleaned up my shoulders: he says that by the time they healed, nasty rheumatoid effects would begin to build up again in those same joints.
7. Who will do your RA surgery?
RA surgery is performed by an orthopedic surgeon—preferably one who has done many operations on people with rheumatoid disease. If you do not know of a good one in your area, be sure to read several online reviews from her / his patients. None of the rheumatologists that I’ve seen have ever mentioned surgery as an option to me or offered to refer me to an orthopedist. So don’t assume a discussion of surgery will necessarily be a part of usual rheumatology care.
You might also like to read:
Hard truths on RA surgery
8. What’s the grimmest truth about RA surgery?
Over the past few years, as I talked with my orthopedists about which surgeries might help various joints, I was surprised most by this one thing. One of them told me that he hasn’t seen any new surgical options in his specialty for people with RD in decades. Often, surgeries in RD do not actually repair structures as they do for the same “injuries” in other patients.
9. Why do fewer people get RA surgery now?
There is a theory that fewer people with RD are having surgery because the newer medications have worked miraculously so that surgeries are not needed. The answer is actually more complex. Surgeries are delayed because there is a longer list of medication options to try, as well as physical therapies or assistive devices, especially with milder RD. But my doctor has also learned by experience that surgery is not necessarily the best option with unrelenting RD. For that reason, he’s reluctant to operate too quickly in my case.
10. What’s the hardest part about RA surgery?
The hardest part for me of living with a cast on one arm is that the rest of my joints are still very limited, so it’s hard to manage. It’s also frustrating trying to explain why I had surgery to repair two of 200 damaged joints.
WHAT ARE YOUR QUESTIONS ABOUT RA SURGERY? DO YOU HAVE ANY ADVICE TO SHARE?
- Early RA Screening Matters
- Saying Rheumatoid Disease, Not Arthritis: It’s Not Just Me
- 10 Ways I Know RA Is Not Your Fault