Don’t Be Afraid to Question Your Doctor

Warning: this post will be only tangentially about knees.

First, I was going to write about crashing my bike last week. I went down hard at 25 miles an hour after the guy in front of me braked hard and our wheels brushed, and I ended up bouncing and sliding on the pavement. My goodness, the litany of injuries: road rash on my face, swelling over one cheekbone, sprained wrist and finger, scrape on one forearm, bruising on my hip, and then knees banged up with cuts on both and a little swelling on the right one.

I was fully clothed, this being winter, yet still the crash was violent enough that I had bloody rashes under my garments. But the upshot: a week later, I’m in pretty decent shape, and the two knees feel pretty good (the scabs aren’t pretty, but they’ll go away soon). I’m a healer! :)

So that was going to be the post, then my daughter caught the flu, and my wife called me yesterday from the pharmacy to say she had bought Tamiflu for both Joelle (7) and Elliot (three and a half). Elliot didn’t have the flu, so he would be given the Tamiflu in a prophylactic way – to hopefully lessen his chances of contracting the virus.

It cost a heckuva lot -- $78, and that’s reduced from $600 with no insurance. But something else was sticking in my mind as I got off the phone with her. Tamiflu ... Tamiflu ... hmm, what do I know about Tamiflu?

I started poking around on the internet, and immediately started getting a bad feeling about this drug. It sounded a bit controversial. It also sounded like it was of uncertain efficacy. And one side effect I found rather chilling: “neuro-psychiatric events.” So kids can have nightmares, insomnia, delusions. Those aren’t typical side effects of say aspirin or Ibuprofen.

Now for those of you who don’t know me well, let me be clear. I’m not some nutter when it comes to medicine. I’m not anti-vaccine. I’m pro flu shot. I try to keep an open mind, and always consider the scientific evidence and the statistical likelihood of outcomes.

And I have loads of respect for well-run scientific studies. I’ve cited the Cochrane Collaboration before, as they tend to do “meta-analysis,” sifting through a wide range of studies for the best ones, and then combining all the findings to reach a conclusion. Here’s what they reportedly had to say in the BMJ in 2014 on Tamiflu (underscoring is mine):

Compared with a placebo, taking Tamiflu led to a quicker alleviation of influenza-like symptoms of just half a day (from 7 days to 6.3 days) in adults, but the effect in children was more uncertain. There was no evidence of a reduction in hospitalizations or serious influenza complications; confirmed pneumonia, bronchitis, sinusitis or ear infection in either adults or children. Tamiflu also increased the risk of nausea and vomiting in adults by around 4 percent and in children by 5 percent. There was a reported increased risk of psychiatric events of around 1 percent when Tamiflu was used to prevent influenza.

That “psychiatric events” warning bothers me. Now, taken literally, an increase of pyschiatric events of 1 percent may not be much at all. As in, say that among 10,000 people with the flu, there are normally 100 “psychiatric events.” On its face, this statement implies that there would be 101 among Tamiflu takers, an increase of one in a population of 10,000. Not much to worry about there, right? Hardly even statistically significant.

Yes, seemingly, but – the nightmares and delusions appear to have a long anecdotal tail when it comes to Tamiflu. Japan banned its use for teens after a couple of suicides and other incidents, including some kid running into traffic. Now, a hundred anecdotes don’t make a statistic, and it could be just some bad batches of Tamiflu, or the kid was going to dart into traffic anyway – but it is a little disconcerting that these cases pop up with some frequency on the internet.

What’s Tamiflu doing in the brain anyway, you fledgling biologists might wonder. Isn’t there this thing called a brain-blood barrier that effectively blocks most chemicals from crossing into the seat of our reasoning mind? Apparently, Tamiflu normally can’t cross the channel. But when the tissue is inflamed, as with a flu, the barrier may become more permeable.

May be. Perhaps. Some incidents. Anecdotes. This isn’t hard science. Hell, I’d the first to admit that I haven’t done a helluva lot of research. But I did call the doctor who prescribed it. Once upon a time, before my knee pain saga, I never would’ve done such a thing. But I’m a bit bolder now. Doctors don’t always get things right. So I asked her reasoning for prescribing this drug.

She explained that she presented it as an option; she didn’t recommend it. She was very nice the whole time we spoke. My tone was perhaps a touch less friendly. But something she said surprised me: A mother had called her office that very day saying her daughter was taking Tamiflu and having delusions. The doctor, thank goodness, told her to take the child off the drug. (Full disclosure: she did say it was the first case of delusions directly reported to her in 14 years of practicing.)

In the end, I told my wife that it was partly her decision too whether to give it to the kids. Me, I wouldn’t. I’m ready to put the whole $78 of the stuff right out on the doorstep, if someone else wants to roll the dice with it. This anti-viral medicine seems to be powerful stuff. I don’t like giving my kids stuff that powerful unless they absolutely need it.

My daughter had a temperature of 104.7 yesterday. Today it’s about 101 and going down. I think she’s going to be fine.

On Skepticism About Cartilage Healing

Recently I’ve seen some comments popping up questioning the idea that cartilage can heal. So I wanted to devote a post to that. Some of what I’m about to say will sound a bit different from what’s in Saving My Knees, because my thinking has changed somewhat. However, my belief that damaged cartilage can improve remains as strong as ever.

First, what’s changed: I don’t see knee pain through such a cartilage-centric lens anymore. Knee pain sufferers often do fine with some cartilage defects, and curing these shouldn’t become an obsession. I did note in the book that some people with cartilage defects have no knee pain; others that appear to have fine cartilage have lots of knee pain. Cartilage flaws and knee pain certainly don’t correlate perfectly.

Do I still think my problem was my knee cartilage? I think that was at least some of it, yes. My knees made awful crunching noises; they are much quieter now. But how much of that could be from improvements in the synovial fluid and how much from better cartilage? On that, I honestly don’t know. What’s changed in my analysis: I think some of my problem lay in the bone endings and could have been detected with a bone scan.

Again, these are just theories. What I do know is I had knee pain that the best doctor I saw said would never get better, and I smiled outwardly and inside I said, “Screw you, I think you’re wrong.” And I devoted more than a year of my life to proving he was. Recovering from chronic knee pain was the hardest thing I’ve ever done, and the achievement I’m most proud of (getting into Harvard was only about doing well on some tests and writing a good essay by comparison; I am extremely proud of my children, but they are their own accomplishment).

Occasionally – and I must say very occasionally, because this blog has some really terrific followers – I catch a whiff of a newcomer probing, trying to figure out what kind of fraud I might be. “Hmm, cartilage can heal? Curious that this fellow says so, when my doctor says it can’t, and my physical therapist says it can’t. But I bet you can sell a lot of books that way. So let’s see if he can produce some evidence that his cartilage regrew.”

(Please check out this post where I address head on the question “Why don’t you get a second MRI to show all the cartilage healing that you claim occurred?”)

My more expansive reply to a skeptic is: Don’t get distracted by thinking your end goal is to walk out the other end of the tunnel with pristine cartilage. That’s a waste of time. You need for the cartilage to get stronger, more resilient, more capable of handling day-to-day loads. Whether it’s once again as smooth as a baby’s bottom ... that’s not the main issue.

Today, I feel confident that mine is much stronger than it was than when I had constant knee pain.

But let’s backtrack for a moment and tackle the tough question directly. Can cartilage improve? Can it be restored in spots where it’s vanished? On this, don’t waste your time looking at my knees. Just consider the studies I cited in the book. There were two that I recall; they’re in the bibliography for anyone to track down.

Let’s consider one briefly. It’s called “A Natural History of Knee Cartilage Defects and Factors Affecting Change.” You can find it here (at least until it disappears behind a paywall, which I hope it never does, but one never knows).

What amazed me about this study, and I hope this came across in the book, is that researchers found that cartilage defect scores got better at about the same rate they got worse. Also, this was the same for knee pain sufferers as for pain-free subjects. At the time, the implications seemed mind-blowing. Changes in cartilage are a two-way street. You don’t just get worse.

So you may wonder: Well, those that got better, what were they doing differently? Answer: we don’t know. Notice this study is called a “natural history.” That means the point wasn’t to test whether walking or Pilates is better for rehabilitating bad knees; it was simply to observe the knees of more than three hundred subjects over a longish (two-year) period and see how they changed naturally.

Do you get why that’s so great? Think about it for a moment. People who weren’t trying to do anything in particular to “save their knees” saw an improvement in cartilage defects over this period. Imagine what they might have accomplished had they actually been trying to save their knees! I can’t tell you how much this study buoyed my hopes. I drank it down like a thirsty man with a glass of cold water and, once I fully grasped the implications, thought to myself, “Damn, I really can do this.”

And then there's also this other study (“Factors Affecting Progression of Knee Cartilage Defects in Normal Subjects over 2 Years”). It showed five cases where researchers saw bare bone on an MRI and two years later, in four of those cases, some cartilage had appeared (Rheumatology 2006, 45:79-84, page 81). That table I reference is in the upper left; an image showing improvement is below. Check it out.

Could it be that all these MRI readings were wrong, that the researchers are fraudulent, that the whole thing is some lousy hoax? Of course, but it’s also possible that my mild-mannered mother is secretly a Russian agent. Lots of things are possible. But what makes more sense: that we’d be created with bodies containing some tissue that just wears out, and that’s it, or that it have some capacity to heal, at least slowly? (After all, most of the rest of our body can heal; even neural networks can rewire after damage.)

I operated on the optimistic premise – not because I’m some dumb Pollyanna. I actually skew more toward the dark-humored pessimistic end of the spectrum. I operated on the optimistic premise because, at the end of the day, it seemed most rational. And it was.