Measuring the change in the density of cartilage after a year is a very useful metric – relatively easy to measure reliably and validly. Evaluating the efficacy of the procedure, however, goes beyond that in a couple of respects. The first is that the conditions (which may be alterable) that affect the relative success of the procedure must be understood, both additively and interactively, and the degree to which a model of those may be properly specified seems quite low at this point. Hence, gathering data from the patients themselves might be very useful in a couple of respects. I must state up front that as a social scientist I find the idea of “testimonials/’ as opposed to self-reports or self-evaluations of the impact across time of the procedure on routine and volitional activities, difficult to swallow. After wrestling with this, I have decided to respond in a somewhat expanded form out of respect for the clinic staff and Dr. Youm
In my case, I had been suffering from increasing arthritis and diminished cartilage in both knees, with my left knee being a lot worse than my right. My preferred style of life includes both a lot of walking and participation in quite a few different sports activities, so doing something about my knees has been a high priority for me. I had been receiving hyaluronic acid injections every six months for a year and a half. These injections were useful in helping me engage in routine activities (walking, climbing and descending stairs, and beginning to walk without stiffness and/or much pain after sitting for an hour or so) and more volitional activities (pickleball, tai chi and kungfu, and long bike rides). However, near the end of each six-month cycle, both sets of activities became more painful and challenging. There was also a pronounced reduction in the
positive impact of these injections from one cycle to another, with the first cycle having a very large impact and the third cycle having virtually no impact. It was at that point that I contemplated either having a double knee replacement or trying stem cell therapy.
How did the Stem Cell injections alter my ability to engage in routine and more voluntary activities?
In order to assess this more objectively, I constructed a self-report scale of routine-activity-engagement pain, with 0 representing no pain at all and 9 representing debilitating pain, and used the week (which I tried to make as typical as possible) before the procedure as a baseline for assessing the level of pain I was experiencing and enabling a more reliable assessment of any changes in felt pain after the procedure. I also kept track of the number of steps (from my Fitbit watch) I took each day as a crude way of assessing the amount of stress I was putting on my knees each day. I stopped gathering data after about five weeks – simply because I was not learning anything interesting beyond the immediate effects. From the very first day, my felt pain was cut from 5 to 2.9. I had expected that there might be a short-term improvement that paralleled the hyaluronic acid injections, and though I write this report two months after the procedure, I have experienced no fluctuation in pain even though my step numbers varied considerably from about 4,000 to 12,000 over that period.
After the first month I began biking for longer periods, playing pickleball more seriously and participating in kung fu more rigorously – all without an increase in pain. And although others reported that at one point I had a mild increase in swelling in my knees, any swelling was temporary. Nor have I experienced any weakness in the back of my knees. I must admit I would love to understand the mechanisms better, but at least in terms of 2-month outcomes, I can report that the procedure was a success for me.
I should note that the difference between routine and voluntary activities is that the former revolve around things that one must do if one is to live a “normal” life defined in terms of the activities in which one engaged prior to the onset of severe knee problems – things like doing small errands, shopping for groceries, going for a walk or to the movies with family members, getting out of bed and going to the bathroom. The latter embraces more of the sorts of things that lifestyle preference scales pick up. But there are tremendous variations across people in the sorts of things they would define as routine or voluntary, and normality can only be assessed with reference to what one was in the habit of doing before (in this case) one’s knees became challenged. Such things are important because that is the frame of reference that people use to judge the success of a procedure: can I do what I need to do and enjoy doing the way I used to?
Is there anything that stood out about the medical care?
I was quite impressed with the initial interview. The procedure was thoroughly explained and the prospect that the longer-term outcomes might be conditioned by the amount of cartilage in each knee was emphasized. The procedure itself was conducted very professionally, including careful x-rays and a collaborative relationship between the clinic and the maker of the critical centrifuge, and thoughtful advice regarding the resumption of normal activities. I was not experiencing much anxiety (though my diastolic and systolic readings were higher than usual just before the procedure). Having injections in one’s knees is a lot less anxiety-inducing than the sorts of surgical procedures I am used to doing research on (multi-fetal reductions — where
the course of anxiety before, during and after the operation can be critical with respect to medical, psychological and relational outcomes. Hence, I would say that the frankness of the discussion about the possible effects of the procedure stood out the most, followed by my appreciation of the collaborative aspects of the procedure and the apparent collaboration on data gathering and analysis that is presumably taking place. For me, given some of the other research I have done, that collaboration added some credibility to the procedure.
Recommendations to friends about stem cell injections?
I have recommended consideration of this procedure to a couple of people with whom I engage in one or another sports activity. I have noted that as of yet, there are no clinical trials, so that choosing a specialist with considerable experience and reputation is even more important than usual, even going to the point of recommending Dr. Youm and the RYC clinic. I have shared my experiences and noted that the only downside at this point is the lack of coverage by insurance.
By - D.W.B.