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.

Pain: What About Patient Centered Care?

This week I had a hand operation that involved the rearrangement of bones and tendons. In case you have not read much about orthopedic surgery it often involves power tools, and may cause you to feel pain after the procedure is over and the nerve block wears off.

In the past I have accepted the usual prescriptions for percocet and Tylenol 3, but this time I refused them since they make me sick to my stomach. Nothing like surgery and throwing up to make you feel really bad.

The plan for another type of pain relief did not work very well at all. I was given a prescription for a different type of pain pill and told to take 1 or 2 every 3 hours. How patient friendly is that? How could you manage to sleep?

perfect pain killer?

If these pills were so ineffective that they would only help with the pain for three hours that just doesn't seem good enough. What kind of patient friendly dosage schedule means you take pills every 3 hours? I phoned the surgeon about this and he did not even understand the point I was trying to make.

Let's just imagine we were talking to a Doctor like Victor Montori, who has sympathy for what is now known as the burden of disease. I wonder if he might think of a better way?

Burden of disease is crushing

I was about to delete this blog post until I ran it by a few friends. 

This is what Lucy thought: 

"I don't know what it is with pain medication but I think they think we are all addicts. When I had my knee replaced I had to fight for more pain medication in the hospital and then when I went home they gave me barely enough to last two weeks. Thank goodness my doctor agreed to give me more. Another patient at Physio had hardly been given anything by his hospital and couldn't do his therapy. It was really awful - he didn't have a GP to go to for help. 

I always meant to talk to my surgeon about this and I will in future as I think it is something they need to look at."

And Joanne agreed to an extent:

"I agree with you on the pain pills and with Lucy's comments. The drugs they give us going out of the hospital are completely inadequate both in dosage and in # of pills. I got too little after my hip surgery. Only enough for 3-5 days. I don't know the equivalence but after the hip experience, I asked my GP for a prescription in advance of hand surgery and had plenty of pills. Even that didn't get rid of the pain entirely. 

The fact that my pills had acetaminophen in them was also an issue because it would have taken me above my daily limit. If I have any more surgeries, I will request drugs in advance from my GP. From 3 surgeries, it doesn't seem to me that the hospitals will bend on this issue. I hope your pain begins to subside soon."

Whatever happened to patient centered care? Is it any wonder that patients don't always follow instructions?!

When you obviously have pain, beyond a shadow of a doubt, you can't even get adequate pain relief. That adds even more weight to the previous post about the difficulty of getting pain relief with chronic pain.

Informed Consent

It was great to see a conversation about informed consent taking place at Stanford's MedX Conference on September 18. I have  put these tweets in a storify called Informed Consent at MedX. It's an important topic and I was happy to collect them in one spot. The MedX stream went so fast it was hard to get much that is verbatim.

Here's my view on some aspects.

In surgery you expect to know what is going to be done during your operation. Consenting to a procedure based on the expected results is not good enough. For instance for a forefoot reconstruction I don't think it is adequate to be told that your toes will be straightened. For my first operation the only way I was aware of the actual procedure used on my toes was to read the file. The only reason I was able to was that I was left waiting in a hall with my file and nothing to do. Needless to say I was surprised.

                                        Imagine this is me in the hall

That happened years ago but it is a more recent example of how not to do Informed Consent.  For this situation I can almost visualize a Walking Gallery jacket. I was having a toe shortened so I would be able to wear shoes more comfortably. Once I was sedated and lying on the gurney outside of the operating room the surgeon came out for a talk about the two possible methods he could use to do the procedure. As a sedated 'people pleaser", I chose the method that was easier for him and signed the consent. I still have to look at the results every day. It's not pretty. Now only doctors and students see my feet.

                                     (and everyone else  in the world)

In market research we often worked on projects for banks about credit card holders. Basically there are two types of customers. Transactors who pay in full every month and Revolvers who pay less than the balance. You might wonder how this relates to informed consent? 

I found a study about consent stating that many doctors look at the informed consent as a transaction, not an ongoing process. It is something that needs to be dealt with because of potential liability. The idea that it is part of patient education has passed them by.

The whole abstract of this interesting paper is included here because the points the points the authors make are so significant. 

Beyond Informed Consent: Educating the Patient
Lawrence H. Brenner, JD, Alison Tytell Brenner, BA, and Daniel Horowitz, MD

Based upon our interpretation of the literature and experience, we make the following recommendations: (1) The informed consent form is not a substitute for educating a patient. It is merely evidence that appropriate discussion occurred. In addition to assuring that the patient has signed the informed consent document, these discussions must occur. (2) The forms should be designed to be understandable, and all care should be taken to ensure that comprehension is achieved, and the process should be viewed as a tool to educate rather than waive liability. (3) The surgeon should avoid the paternalistic approach in dealing with uncertainty and, instead, use uncertainty as the foundation for forming a therapeutic alliance. (4) A well-educated patient does not need to be presented with an exhaustive list of every conceivable complication. Rather, an educated patient needs to be an active participant in a dialogue about the inherent risks of the surgery that are important to the individual decision-making process, ie, the risks that are specifically of concern to that patient. For example, the complications of hand surgery may be more material to a concert pianist than the average patient. (5) An understandable note in the medical record that a discussion has occurred with the patient and/or the family may be far more effective as evidence of the discussion than a lengthy signed but incomprehensible form.

Update on wrist fusion surgery

4 1/2 months later:
I'm still very happy with the results of the surgery.  I no longer have pain in my left wrist, which was the first priority, but I have also regained function that I did not know I had lost.  The beginning of the story is in this post about the fusion.

Here's a picture of my right hand when I try to turn it palm up.  You can see that I can't make it level, as you would if someone were giving you change.

                                          A. McKinnon
Now here is the left, after the fusion.  Before it was like the right wrist and did not turn palm up. (that motion is called supination) Now I can make it turn almost 90 degrees with my elbow at my waist.

A. McKinnon

It  took some work and exercise to regain that range but it was well worth it.  An added bonus is that I can type faster now.

I also have copies of the X-rays at the bottom of the post.  If you do not like to see X-rays then don't go all the way to the end.  Not everyone has an interest in the actual nuts and bolts (only too true) of orthopedic surgery.

This picture shows how well the scar has healed four months later, and a ring splint that I wear for a swan neck finger, in case you are curious about the silver ring.

                                       A.McKinnon

This hardware did not cause me any trouble at the airport.

Here is the link to the post about the actual surgery

The X-Rays

                                      A.McKinnon