Arthroplasty of the MCP Joints (New Knuckles)

If you had rheumatoid arthritis (RA) diagnosed in the 80's, or if your RA has been very aggressive, you might know the meaning of the title. Otherwise it sounds like medical jargon that you need to go home and google. As an involved patient I always want to know what medical language means.

The story starts with a surgeon who must have been tired of describing procedures to patients. He put up a hand to stop my questions at the first visit, when he laid out a plan that ultimately involved straightening my fingers. 

However when he said this process would take 3 operations that was the end of the road.  With a full time job I could not afford the time to have that much surgery. His plan was to fuse both wrists and then straighten the fingers - I found out on my own that this is the best way to proceed. His explanation of his reasoning was not 'patient-friendly.'

Once I retired I was able to take the time to start with surgeries. The results of operation #1 were very successful, so after a year I went back to have a second wrist fusion. With both wrists immobilized and with the new found ability to turn my hand palm up, I was ready for the grand finale and just in time, because my fingers were getting worse and using them was getting more difficult. 

How much worse? This much

But - when I went back to the surgeon, he said "Too bad you didn't have this done when I suggested it because I'm retiring." Not the most sympathetic doctor, but also not the only one in the city.

Now it's done and I have new knuckles. Despite telling Debby's story of success with this I had doubts, especially when a trusted friend told me that doctors in her city were no longer willing to do this procedure.

However, with a US friend who has RA finding that three of her fingers were so badly displaced that she has lost hand function I carried on.

This is a picture of what I believe my knuckles look like on X-ray now. I don't have an x-ray of my own since the doctor did not do one. Now I have an implant in all 4 of my knuckles (MCP joints).

Silastic implants

You might wonder whether the operation was a success.

It was done ten weeks ago. I started in a cast, then graduated to various splints. Every week the Occupational Therapist would adjust both the night splint and the one I wore during the day. 

The day splint became smaller as I was able to gradually start moving my joints more and to start on a gradually increasing exercise program. I felt that the splinting and the exercise program were as important to the operation's success as the surgery.  

Now I am able to write again and to type faster. The occupational therapist who is still helping me advised me to wear a small splint to keep my fingers straight during the day, and a splint from fingertips to forearm at night. In retrospect I think that the surgery was only half of the procedure - occupational therapy and dynamic splinting was vital for the final success.

Here's the finished product - my hand today! Better than before.

It's a perfect example of the teamwork between professionals that is required for the best results to patients.

Perfection  is impossible, but I expect to be able to use my hand for a lot more years now, and better long-term function was the main reason I had the surgery.

Real Hands, Real People

Thank to my friends for sharing stories about their hands.  I find it helpful to hear what others experience and know I am not alone.

Note: Bear in mind that some of the people speaking have had rheumatoid arthritis from before biologic drugs were discovered, and are dealing with joints that were damaged due to ineffective treatment.

Gail's Hands:

On my right hand the first knuckle is already deformed and some of the others are too but not as much as that first one, and that's a part of the recent increase in pain in my hands.  The little knuckle has been hurting while my finger is swaying even more.  Sometimes my fingers ache like crazy but that comes and goes.  Sometimes I have deep aching here and there and that comes and goes.

Ring splints

Allie:

I have the swaying of my right hand - Ulnar Drift.  I have a lot of swollen synovial tissue under the fingers on the knuckles - especially my right hand.  About a year ago - after remaining fairly stable for years - the middle knuckles on my fingers became permanently swollen and I can no longer wear my rings because I can't get them over the knuckles.  It was mainly my right hand that was affected.  But, later on - my left hand also is having changes and the middle finger on my left hand is swollen and painful.

The pain in my hands kind of comes and goes or maybe I have just become used to the pain. The night splints that the occupational therapist made for me helped a lot but after several years, I quit wearing them because I felt I didn't need them. Now, I think I probably need new splints made - especially for my right wrist.

Resting splints

Julie:

I really didn't realize how awful my hands looked until I saw a fairly recent photo of me with both of my hands in front of me.  My fingers look awful and my right wrist is all swollen.  My right wrist is so painful that I am having problems cooking.  Well - also standing on my lousy feet. I never had the sensation that the joints are moving and tugging.  I think everything on me went slowly and I just didn't notice.

I saw a hand surgeon early on in my trip with RA.  At that time, it was really my right index finger that was really bothersome.  He described the surgery he would do and said it would take 6 to 8 weeks for recovery.  Then, to this statement, he said "I will become your best friend".

I didn't like the sound of the surgery or the fact that he expected me to have many more hand surgeries - so I just passed on the entire thing.  Yes - my hand looks awful and at times is painful.

Angela:

I can't say I ever liked my hand surgeon. I respected his skill at surgery and put up with the rest. He's the one who put his hand up like a stop sign to keep me from asking questions, who told the students not to  worry if patients said that they had trouble with personal care because "they'll figure it out" (and this with a room full of Occupational Therapists beside him).

My friend saw the same doctor once and he told the woman on the other side of the curtain, "Fine, we'll go ahead and take care of your hand" then when she was gone he said to the resident - "It will never be better". She told him that she hoped he would not lie to her the same way.

Polly:

The hand surgeon I saw in 2004 wouldn’t even attempt to repair my hands because he said the surgery I would have to have is not perfected. He said as long as I can use my thumb and “pointer” finger left to use, that I would be fine unless I was in pain 24/7.  Well I am not in pain, but I can't use any of my other fingers. They’re in a fist now.

I don’t think he would have said that had it been his hands.   It's maddening how they pooh pooh it all. So he didn’t even suggest having the surgery way back then.  Now when I went to another hand surgeon this year he said it could be done but it might or might not make me more functional. It depended on whether you talked to the Dr face to face or read his clinical summary where he said it was not likely to help. I think the summary is called CYA.

I asked him also...both hands at the same time?  Yes, you’ll still be able to use a couple of your fingers...  I said you know I live alone?  have pets? That’s what rehab will help you with. We can get you  a home health aide, house cleaning help. I can't even turn on the ignition of my car without a special soldered key turner.  I walked out knowing he wasn’t really concerned about me. When I found out he told me one thing and wrote another, I knew I would live with these hands.

Loyal pet Dolly