Rheumatoid arthritis (RA) is an autoimmune disease in which the body's immune system attacks the joints. One of the common issues that results from this condition over time is something called "drift". In a healthy hand, the metacarpophalangeal, or MCP, joints (the ones connecting the fingers to the hand) are protected by a synovial sac, and the ligaments lie in a tunnel that passes directly over the knuckle joint, keeping the fingers in straight alignment and allowing the extensor muscles over the back of the hand to straighten the fingers out, pulling them upwards toward the back of the hand.
However, RA tends to dissolve those protective sacs, and for some unknown reason, the muscles on the pinkie side of the hands overcompensate, causing the fingers to pull, or "drift", toward that side. As a result, the ligaments are pulled out of their tunnels and off to the side between the knuckles, so instead of extending the fingers, the fingers are pulled toward the palm of the hand.
In my case, I was able to physically straighten my hand most of the way by using my other hand or by pushing my fingers against a table, but by using just my own muscles, this was as far as I was able to straighten my fingers or flatten my hand. It's hard to see in this photo, but my knuckles were greatly enlarged and stuck up noticeably when I did flatten my hand. You can see how the knuckle at the base of my index finger sticks out past the line of the finger itself.
I didn't have a lot of pain in those joints, but it was certainly difficult to hold a pen, and I couldn't pick up a drinking glass from the table without using my left hand to pass it to my right at an angle. Even holding the steering wheel, my fingers tended to overlap and make it difficult to get a firm grip. Clearly, it was time for surgical intervention.
My orthopedic surgeon explained that he would replace all four joints with silicone replacement joints. Unlike knee or hip replacements, which are in two separate parts (similar to the natural joints), MCP joints are replaced with a single-piece hinged unit which allows movement in mostly a single plane (similar to a door hinge). The existing joint is removed (try not to think about that part too much), and the "pins" at each end of the replacement joint are inserted into the remaining bone.
All four joints are replaced in a single surgery, with a one horizontal incision that extends across all the joints. In addition to inserting the artificial joints, the surgeon "re-balances the soft tissues" of the hand; i.e., adjusting tendons, ligaments, and muscles to prevent the drift from recurring. The surgery is performed under sedation and a nerve block, rather than under general anesthesia, as the surgery generally takes less than 2 hours, which allows for a much quicker recovery, so it can be done as outpatient surgery.
During the surgery, a drape was placed along the right side of my body so I couldn't see what the surgeons were doing (much like during a Caesarian section), but I could hear everything that was going on. A nurse on my left checked in with me periodically to be sure I was comfortable, placing warmed blankets on my legs and asking how I was doing. I was able to feel some gentle tugging now and then - I remember thinking, "Huh, they started the incision at my pinkie; I assumed they'd start at my index finger" (it felt like someone gently drawing a line on my knuckles with a pencil) - but there was never any sensation of pain or discomfort. In fact, they only discomfort I felt during the entire process was as they were closing up the incision and I realized that I had to pee. REALLY badly. (Apparently you get a LOT of IV fluid in your system over that couple of hours!!)
Before I knew it, I was in a recovery room, with my hand strapped to a heavy metal splint and wrapped in three or four Ace bandages. As my head was clearing, the nurses and the chief resident talked to me about what I could and couldn't do for the next few weeks, and presented me with a lovely yellow Carter pillow to help prop my arm up in the air, 24/7. My kids immediately dubbed the pillow "SpongeBob" (or, in my daughter's case, "SpongeHole").
I was in surprisingly little pain, considering that someone had just cut my hand open, pulled a bunch of junk out, shoved a bunch of new junk in, and sewed me up with 21 stitches. I used the heavy-duty painkillers for the first 24 hours, but after sleeping through the second night after the surgery without waking up and wanting to take something, I switched to extra-strength Tylenol, which I continued to use for about a week. Even the minor pain I had could be described more as "discomfort" than pain. Have you ever had someone really strong shake your hand and grasp it hard enough that your knuckles feel like they're being pressed together? That's what it felt like, along with the occasional mild stinging sensation along the incision, like when sweat gets in your eyes (which may very well have been what it was - four Ace bandages and a dense foam pillow are pretty insulating!). Over the course of the next few days, some really impressive bruises blossomed along the length of my arm, down to my elbow. They were a result of blood pooling during the surgery, rather than any kind of tissue damage, so they weren't painful at all, but they were very colorful.
That first week and a half of having my arm propped up, not being able to drive, not being able to shower, and being hot and sweaty, was more frustrating than I expected. But it passed quickly enough, and I was delighted to return to the surgeon's office and get my first peek at the results. An assistant cut off the bandages and threw the splint in the trash (what a satisfying CLUNK! that was), then left me to admire my beautiful - albeit extremely bruised - hand for a few minutes before the nurse practitioner came in to remove the stitches.
You can still see a bit below the line of stitches where the surgeon had written "yes" in permanent marker next to each knuckle to be replaced just prior to the surgery. The darkness on my finger knuckles and on the back of my hand is a combination of the pre-surgery disinfecting scrub and bruises that had reached that lovely greenish-yellow stage. But even so, my hand looked so beautiful to me that I choked up a little. I hadn't seen my fingers that straight or my knuckles that slim (even with the post-surgical swelling) in years.
I was expecting to be sent home in a cast for a month, so I was delighted when the NP sent me to the occupational therapist to be fitted with a lightweight, removable splint and to begin OT exercises.
Nothing felt quite as good as scrubbing my hand really well for the first time in nearly 2 weeks! My fingers were noticeably puffy, and the knuckles were quite swollen, but my hand felt good. REALLY good.
It also felt really good to get rid of that awful yellow pillow. But I think my daughter was even happier, because she inherited it and has already come up with a dozen uses, including as a rather fetching hat.
I was prepared for the OT to be uncomfortable, even painful, but it was actually quite nice. The first few sessions began with a wonderful hand massage, and after a couple of weeks my sessions opened with 10 minutes with my arm stuck in a machine that gently swirled heated fine-grained sand around my hand to loosen up the tendons and ligaments. Between the heat and the calming white noise, it was like being on a beach in Hawaii, dangling my fingers in the sand. I even had one session with an ultrasound wand to loosen up my stubborn index finger, followed by a massage of that one finger with a tool that looked like a fat, plastic, purple screwdriver. It sounds awful but it felt amazing!
One month after the surgery, I had regained almost complete range of motion. I was able to straighten out my hand almost completely, and make a loose fist.
When I met with the surgeon that day, I told him that if it never improved any more past what I had, I would be more than happy with the results. He laughed and told me that I would continue to improve, in terms of flexibility, in decreased swelling, and in that the scar would fade to being barely noticeable.
At this point, I was still wearing the splint most of the time, removing it to shower, do my OT exercises, or occasionally just to cool my hand for a few minutes. But at my last OT visit, I was rewarded with a cut-down version of the splint which allows my fingers to bend. More movement of my finger muscles should help get rid of the edema in the knuckles and the back of my hand. The OT also placed a long strip of kinesiotape down the length of my arm, which is supposed to lift the skin slightly, allowing the fluid to drain more easily.
(Yes, I was slightly disappointed that the tape wasn't purple or some other cool color. But it's still pretty cool.)
So that's where I'm at right now, almost 5 weeks post-surgery. I've tried very gently using a knife to cut my food; I've held a fork and a cup with my right hand; I've even typed a bit on the computer. I tried to use the computer mouse for a bit, but the position of the button naturally pushes my fingers to the wrong angle, so I'll save that for a later date. I can't quite grip a pencil or a pair of scissors strongly enough yet, and brushing my daughter's curly hair requires more pressure than I'm comfortable using at the moment, but I feel like I'm taking lots of baby steps. I'm moving slowly, but it's all in the right direction, and I'm definitely getting there, slowly but surely!!
Before and after.
This is very informative and reassuring. Thank you for giving me hope.
ReplyDeleteI had this same procedure 10 days ago. My dressing comes off tomorrow! Dr. Carter, of pillow fame, invented that pillow while I was his patient. Perhaps my whining inspired him. I have had zero pain, which amazes me.
ReplyDeleteThanks for sharing your experience!
I'm about to have the same surgery, so this was very encouraging to read. Thank you for sharing your experience.
ReplyDeleteThank you for sharing! Both my hands need the same surgery. I’ve been putting it off for years. Your story has given me confidence!
ReplyDeleteThat was quite informative. Surgeon suggested this for me and rheumatologist concurred. But winter is coming and I heat mostly with wood. Since I live alone, I may have to wait until warmer weather. Thank you.
ReplyDeleteHow is your hand now in 2021? Any issues or still good? Would you recommend to do this to others w a similar issue?
ReplyDeleteThx again for this info!
It's still doing great! Every now and then I feel like a little bit of drift might be coming back, but I just work on my OT exercises for a few weeks to strengthen things and that takes care of it. I would definitely recommend this procedure to anyone who is having the same issues I did.
ReplyDeleteMay I ask where you had the surgery and who your surgeon was? I was scheduled for the same surgery last week but it was canceled. I may need a new surgeon.
ReplyDeleteI had my surgery at Lahey Clinic in Burlington MA, and my surgeon was Dr. Kasparyan.
ReplyDeleteSandy am so happy to have found your blog. Both my hands are affected badly with RA and I am going to get the knuckle joints replaced. Your blog is so helpful. Thank you. Can I ask you how your hand is typing and I presume you are limited with how much weight you can carry or lift? I lift small weights and am wondering how this will work. Thank you and regards from Scotland.
ReplyDeleteI have no problem at all with typing. Because my wrists are also affected, my rheumatologist recommended not lifting free weights heavier than a few pounds, but that's a limit of my wrists, not my fingers. I'm able to do tasks like opening jars and using a screwdriver with more strength than I had before the surgery. For years after my surgery, I'm still very happy that I had it done!
ReplyDelete*Four, not for (maybe my typing skills aren't as good as I thought after all, lol!)
ReplyDeleteThank you Sandy. Accidentally closed the tab and had to go looking for your blog again. Thank you for your reply. So helpful. My husband lives in New York. I am going to visit later this year. I am toying with the idea of getting surgery done at your clinic. I would pay privately. Would $10k cover it. It would cost less here. We half public healthcare which is free but we have long waiting lists now after covid.
DeleteSending you best regards and best wishes from Scotland.
May b
Hi May - I am honestly not sure of the cost if paying privately. I am fortunate that my insurance covered the cost. The amount my insurance paid was (I believe) closer to $20K, but often the cost is reduced for uninsured patients. I would recommend contacting the clinic to see if they could give you an estimate of the cost. Best wishes to you!
DeleteThanks so much Sandy. I have replied several times but my replies seem to disappear. Best regards from Scotland. May
ReplyDeleteSorry - I've had some trouble with spammers posting blog comments so I have to approve all comments before they appear. So there's often a delay of a day or two before you can see them.
ReplyDeleteMrs Sandy, I'm facing the surgery you had done to your knuckles. My hands look just like yours before your surgery. I was wondering if maybe you would give me a little info how how much it has helped you or if it did.
ReplyDeleteMy functionality is SO much better! I still have noticeable drift when I relax my hand, but I can straighten my fingers without assistance, and the scar is barely noticeable. 4-1/2 years later, I'm still very happy with the results and I'm glad I had it done. Fortunately, my other (non-dominant) hand has very little drift, so I don't expect to need surgery on that one for years, if ever, but if I did feel the need I would have it done without hesitation.
ReplyDeleteAll these years later, I am grateful you shared this post and your experience. I am witnessing my hands getting worse and worse from RA and am curious about getting this surgery. I read at one time that it may be better to get it done sooner than later? Did you ever post any more updates/photos?
ReplyDelete