Friday, 14 February 2014

Engaging with Surgeons

After years of enduring lengthy waits to see my orthopedic surgeon, almost to the extent of needing two books plus sudoku and lunch to keep me occupied, I got a nice surprise this week.  

After I checked in for my appointment, the request for x-ray was sent electronically. Images of my feet and ankle were needed and the tech actually asked me which ones should be done. Having this input made me feel that my informed choice mattered more than in past years where the order went in and no one asked me any questions. 

X-ray machine

I returned to the check-in desk and waited only 15 minutes. 
The secretary who is usually monumentally inaccessible was available and pleasant. For this doctor the time required was a speed record - under two hours.

But this story is not about hospital process improvements. It's about how much my experience has changed through becoming an engaged and educated patient.

I hardly had a chance to get bored in the exam room before a Fellow came in (a fully trained surgeon but not permanent staff)  He was very pleasant and asked about what hurt. He warned me he was very good at finding the most painful spots (true). After looking at my feet and poking at the appropriate areas we talked about my ankle which he said looked only a little worse than on an old x-ray. It turns out the new pain is from the subtalar joint - one of the necessary but not well known joints which is below the ankle.

RA in foot

He went away and came back with my doctor and another surgeon who seemed to be visiting. All three looked at the two xrays (this week vs 2008) and my foot with keen interest and then called the resident to come in and tell them what he was able to learn from the image.

So now there are 4 surgeons in the room. The resident got the findings right and picked out the bad joint. Since each foot had had past surgeries the doctor gave a mini-lecture about the methods used then and now. Then another surgeon joined the crowd. They agreed it was end stage (Stage 4*) rheumatoid arthritis in the foot and a fine example of deterioration from a teaching point of view, seldom seen now with better treatments to prevent damage.

They said my foot looked better from the back than they would expect, and wondered how far I could walk, did I have orthotics, and said an ankle foot orthotic (AFO) brace  might help. I showed them my very helpful brace and the Dr said they could inject cortisone into the joint if I wanted, but would be hard to do since there is now so little joint space

Then they had a spirited discussion about what kind of surgery would be the best choice and seemed to agree that the one I have been ducking for the past 8 years was the one for me. A triple arthrodesis. Did I want it in 6 months or a year? So much for wait times.

So I said that it didn't hurt enough yet to go ahead.  The doctor incredulously said "Five surgeon's opinions here and you're saying no?" 

These days I really feel that I am a full participant in my appointments. Knowing the terminology and what the results of surgery are likely to be I can contribute to the discussion. Fifteen years ago I would have freaked out about the "end stage" and certainly a  lot of what they said would have gone right over my head.

This appointment was actually very enjoyable and a great learning experience. Despite what sounds like grim findings I feel almost the same as last year and now when I do go ahead with the surgery I won't worry about a second opinion! 

Being an educated and engaged patient is so much more interesting than being the passive recipient of treatment advice.

A good looking foot (nice bones)

* If you are really interested in how to characterize the stages of joint destruction in Rheumatoid Disease here is a link to an NIH article and the basics listed there.

- Stage I:
- represents synovitis:
- synovial membrane becomes hyperemic and edematous with foci of infiltrating small lymphocytes;
- joint effusions w/ high cell count (5,000 to 60,000 per mm3)
- x-rays will as yet show no destructive changes, but soft tissue swelling or osteoporosis may be seen;

- Stage II:
- inflamed synovial tissue now proliferates & begins to grow into joint cavity across articular cartilage, which it gradually destroys;
-narrowing of joint due to loss of articular cartilage;

- Stage III:
- pannus of synovium;
- eroded articular cartilage & exposed sub-chondral bone;
- x-rays will show extensive cartilage loss, erosions around the margins of joint, and deformities may have become apparent;

- Stage IV:
- end stage disease;
- inflammatory process is subsiding;
- fibrous or bony ankylosing of joint will end its functional life;
- subcutaneous nodules associated w/ severe disease

Stage 4 rheumatoid arthritis is the end stage of the disease. The inflammatory process begins to die down, the joint becomes less functional and may become totally immobile.
There are also some patients who've had rheumatoid arthritis for a long time and have had their joints badly damaged over the years. These patients, who may now have low levels of inflammation, are sometimes referred to as being in "end-stage" rheumatoid arthritis. (Note that end-stage rheumatoid arthritis is not a terminal disease; it's just an advanced stage that not everyone develops.)

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