Saving My Knees: How I Proved My Doctors Wrong and Beat Chronic Knee Pain (17 page)

In the fall of 1995, patients were recruited for an unusual medical trial.

The site: the 118-acre campus of the Veterans Affairs Medical Center in Houston, one of the country’s largest hospitals dedicated to caring for war veterans. The subjects: people aged seventy-five or younger who had at least moderate knee pain and osteoarthritis. The question: for sufferers of the disease, how useful was arthroscopic surgery?

Seven years later, the findings landed on the pages of the prestigious
New England Journal of Medicine
with the impact of a bombshell.

The arthroscopy is a big procedure in the world of knee pain. As the study’s authors noted in their report published on July 11, 2002, more than 650,000 of the operations were being performed in the United States yearly. At a cost of roughly $5,000 each, that totaled $3.25 billion dollars.

The procedure aims to clean up bad cartilage. The surgeon first makes several small, quarter-inch incisions in the knee. He inserts through one opening a pencil-shaped device that includes, at the tip, a tiny television camera and fiber-optic light. Through another hole he slides in a cutting instrument. In this manner, he accesses the inside of the joint without having to slice the knee wide open.

Commonly the surgeon performs both “debridement” and “lavage.” For debridement, irregular cartilage is shaved smooth. For lavage, the joint is flushed with a large amount of liquid to wash away cartilage fragments floating in the synovial fluid.

Subjects in the Houston study were randomly assigned to one of three groups. One-third had an arthroscopy performed that included both debridement and ten liters, or more than two and a half gallons, of lavage. One-third underwent the operation with only lavage. The last batch of patients became the placebo group.

When conducting drug trials, manufacturers whip up placebo pills that look like the genuine medication, but lack the active ingredient. Subjects don’t know which they are getting: the real pills or the fake ones. This allows researchers to establish a control group of placebo takers to measure results against. It’s not hard to create a dummy pill. But how do you convincingly fake surgery?

One way is to engage in a bit of artful deception. Placebo patients at the veterans medical center received a tranquilizer. Their knees were prepped and three small incisions made, as if they were having surgery. They heard the splash of saline solution, as if lavage were taking place. The surgeon even moved their joints exactly as he would in an arthroscopy. Afterwards, they received the same postoperative care.

That sufficed for the problem of how to do “pretend” surgeries. The actual operations, however, posed a different kind of issue. Namely, who would be selected to perform them? A surgeon who possessed poor skills could be blamed personally if the trial showed arthroscopic surgery in a bad light. So someone with strong qualifications was chosen. He had ten years of practice at an academic medical center. He also served as orthopedic surgeon for a professional basketball team.

After the operations, both real and simulated, researchers periodically checked in with the subjects. The monitoring checkpoints included after two weeks, six weeks, six months, and finally two years. What the study found, as reported in their article “A Controlled Trial of Arthroscopic Surgery for Osteoarthritis of the Knee,” was shocking.

At no time did either of the two surgery groups report less pain or better functioning than the placebo group. In fact, at some points, the patients who had debridement (the most aggressive of the interventions) had more trouble walking and climbing stairs than those who had nothing done at all.

The implications were enormous. The U.S. health care system was running up a yearly multibillion-dollar tab for an operation that was useless much of the time.

In 2008, a Canadian study underscored that conclusion. Its findings: patients with knee osteoarthritis who had arthroscopic surgery fared no better than a group that didn’t. Still, some outside experts argued that the procedure remains useful for other knee problems, such as for tears in ligaments or in a disc-shaped cushion known as the meniscus.

The more I thought about it, the less surprised I was. Look at what needs fixing, and what surgery does about it. If you have soft, decaying cartilage, that’s tissue prone to ripping and flaking. You want it to be stiffer and stronger. Also you want the cartilage to be thicker wherever it has worn down. If either goal could be achieved through an arthroscopic procedure, that would be wonderful.

But neither can. If anything, what occurs post-surgery is the opposite of what you want. Soft cartilage grows softer during the post-operative period of less mobility and reduced load, when you’re hobbling about on crutches. As for the thickness, if a surgeon slices away some tissue, that doesn’t leave you with more, but less.

As for smoothing out the cartilage surface and flushing out floating bits from the synovial fluid, that seems good. However, if the remaining tissue is soft and vulnerable, it may simply start breaking up again, putting you right back where you started. What’s worse, you may emerge from surgery thinking that you’ve been “fixed.” That puts you at even greater risk of trying to do too much, too soon, and causing new damage.

Something else bothered me too. An arthroscopy isn’t a black-and-white process. The surgeon isn’t removing pieces of a foreign object, such as embedded glass that clearly doesn’t belong there; he’s making his best guess about where to shave a tissue that is vitally important for the proper functioning of knees. What if he makes a mistake and slices too deeply at a location? Or inadvertently creates a tear where there was none before?

My knee cartilage had molded itself to my body over decades of time and millions of footfalls. In its way, the tissue had retained the memory of steps I’ve taken, of the peculiarities of my sort of stiff-legged gait, of the way I bent my legs and jumped. Even though damaged, it was still dynamically changing and adapting. And I would be placing my faith in the ability of a surgeon to shave and shape it perfectly, in less than an hour, working in cramped quarters through a few small incisions.

For so many reasons, I decided not to pursue having an arthroscopy. The operation probably would have left me in no better shape physically, though worse off financially.

Of course my surgical options didn’t have to stop there. People with knee pain who are willing to surrender to the scalpel have plenty of choices to consider.

If your kneecap pulls to one side, wearing down the cartilage, you can have a “lateral release” to cut a certain fibrous tissue that supports the patella and that may be too tight. Or, if the synovial fluid is thin and diseased, you can have a thick synthetic replacement such as Synvisc injected. If you’re missing a big chunk of cartilage, you can have a microfracture at that location: the bare bone is pricked to prompt bleeding that regenerates the tissue. If your knees are really bad, the entire joint can be replaced with a plastic and metal implant.

On the cutting edge of science, cartilage is even being regrown outside the body and then implanted. This piqued my curiosity. Under one method, healthy cartilage is harvested from your joint, then sent to a laboratory to be cultured. The initial sample grows to about twelve million cells in a month. A surgeon then goes back into your knee and cleans out the damaged area. He sutures a flap of tough membrane from your shinbone over the hole. He then injects the new, sensitive cartilage under the protective patch.

This particular technique, called Carticel, is a means of “autologous chondrocyte implantation” (in other words, “autologous” means derived from your own tissue, and of course “chondrocytes” are the matrix-producing cells in cartilage). A division of Genzyme Corp. that holds the license for Carticel conducted a review of its effectiveness. Among 126 patients who underwent the treatment, average knee scores rose from 3.26 (in the “poor” to “fair” range) to 6.39 (a little better than “good”) over four years.

Those encouraging results demand a few words of caution. First, the study wasn’t independent; it was run by the very people who have a financial interest in seeing Carticel succeed. Also the technique is recommended only for cartilage defects at the end of the thighbone (not for damage under the kneecaps). And another big exclusion: Carticel isn’t advised for anyone with osteoarthritis.

The treatment also happens to be more expensive (about $35,000) and extensive than the minimally invasive arthroscopy. A surgeon must perform two operations, first to snip out some good cartilage to be cultured and then to implant the lab-grown tissue. The second procedure involves peeling the knee wide open. Even after the new cartilage is sewn into place, half of the subjects in the Genzyme-sponsored study had to return within four years for more surgery.

Not surprisingly, there’s a significant risk of side effects, most commonly the formation of excess tissue and scars throughout the joint. In one review of the treatment, one of five Swedish patients experienced various other problems. They included everything from superficial infection of the surgical wound to a condition known as frozen knee, where the joint resists bending normally.

Other companies are busy developing products to challenge Carticel. Regenerating knee cartilage is an exciting new frontier in biotechnology. The viability of this field, though, rests on a premise that I’m suspicious of: that cartilage can’t heal significantly on its own. The evidence suggests otherwise.

In an Australian study, researchers set out to examine how cartilage changes over time. Using an MRI, they found in their initial exams that the tissue had worn to the bone at five different sites among 84 subjects. Two years later, they re-examined the five sites. At four of them they found cartilage where there was none before—at one location, it even looked almost normal.  

My skepticism about surgery only deepened after cruising online message boards where knee pain sufferers congregated to share tales of woe. Many of those who went under the knife sounded disillusioned. Some were pleased with the results, but at least as many were unhappy.

What’s more, surgery seemed to beget more surgery. The hardest-luck cases on the message boards posted with signature lines that included their various medical procedures. It was like looking at the list of war medals from decorated combat soldiers.

I can’t vouch for the character or truthfulness of anonymous people online. I also can’t offer an opinion that’s based on my personal experience when it comes to knee surgery. I never had an operation done. But I know someone who did. 

“Jim” had a microfracture at the end of one of his leg bones to stimulate new cartilage growth. We bumped into each other in the Hong Kong community where I lived, shortly after the procedure. His spirits seemed high. He was like the new kid on the block when it came to conquering knee pain. He excitedly shared a tip with me: glucosamine. He had just begun taking the supplement and his doctor said it would regrow cartilage. I nodded, making no comment. Glucosamine had done nothing for me.

I silently sized Jim up. He was an ex-Marine with a muscular but definitely large build. He appeared to be carrying an extra twenty-five or thirty pounds. He was walking around normally, even though a microfracture creates only a weak form of cartilage that would still be soft.

Inside I winced. Jim was overweight, coming off a microfracture, and seemed to be going about his ordinary life. If he didn’t get into a smart physical therapy program, and hopefully lose a little weight, that brand-new cartilage could get chewed up in no time. And the thing is, because the tissue has no nerve endings, he might not even notice the damage for a while.

Over the following months, I cleaved to my boring walking routine and occasionally crossed paths with Jim. I enjoyed chatting with him: he was gregarious and passionate about understanding arcane corners of economics and history. He always seemed to be lifting an arm in greeting to a passerby. I could picture him late nights in the local bars, pontificating and tossing down beers.

After a while, Jim mentioned that he wasn’t happy with the microfracture and was still hurting. He started pondering other options. At one point he had a series of Synvisc injections to lubricate the joint better and help reduce his knee pain. Those didn’t seem to do much good either.

One day it surprised me to see how badly he was walking. The word “walk” may be a euphemism. He looked like a limping dog, dragging a useless broken limb behind.

We freely talked about knees at some length. I made a remark about the importance of motion. The next time we met, he said his knee was better. He was trying to move the joint more, instead of holding it still and protecting it. His walking looked slow, but more normal.

I congratulated him, while thinking that he still had a very arduous journey before him. His knee was in bad shape. He needed to be under the care of a very good physical therapist.

It’s hard to say what will happen to Jim. In the worst-case scenario, he could be looking at a total knee replacement before the age of fifty-five. Surgery may be the only answer if things get too bad.

Or, if he does everything right, he may avoid the scalpel. There’s always hope.

In this closing chapter, I’d like to reach out and speak more directly to you, the reader.

I hope you somehow benefited from my story. From the beginning, I wanted
Saving My Knees
to be the kind of book I failed to find on bookstore shelves while trying to escape the misery of chronic knee pain. 

At the time, I wanted to read about someone like me who had to endure a hellish struggle, but who in the end won. But I wanted much more than that.
The greater your adversary, the more you need to know to beat him
. I wanted to read about the inner workings of cartilage, about what the latest scientific studies showed about how the tissue changed over time. And I wanted a book that was fairly clear-eyed and lucid, not cloaked in mysticism or based on some wonder herb I had never heard of. 

As shown on these pages, I discovered that bad knees that are considered hopeless can be coaxed back to good health. My story isn’t one of exceptionalism either. I’m not that one-in-a-million guy who, through tremendous grit and luck and maybe a visit from the angels above, banished his knee pain. My joints didn’t miraculously strengthen; I applied myself diligently to a long, slow program that in the end had impressive results.

Make no mistake about it: healing injured knees
is
long and slow. That’s why I believe so strongly in getting on cartilage time. If you don’t, after a while, little setbacks will overwhelm you. What would happen if you tried to hard-boil an egg, but never gave the process enough time? What if you always removed the egg from the water after thirty seconds, one minute, or two minutes, then cracked the shell to find the insides all runny? You might conclude after wasting a hundred eggs it was flat-out impossible to hard-boil an egg.

While I hope readers find
Saving My Knees
an uplifting and edifying story, I realize there are skeptics who may still have doubts. The main criticisms, which I’ve heard before, deserve an airing. In the spirit of open and honest inquiry, I think that it’s best to address these reservations head-on—and that this is a good way to end.

Below are the imaginary critics speaking, in italics, followed by my responses.        

Your story is good—as far as it goes. But as Tolstoy wrote, “happy families are all alike; every unhappy family is unhappy in its own way.” Similarly, unhappy knees differ greatly in their symptoms and what they best respond to. What works well for one may not work at all for another. So how much relevance does your story really have for some other knee pain patient?

First of all, I didn’t suffer from a rare disorder. Quite the contrary. Knees that ache and groan are common. Call the condition patellofemoral pain syndrome, chondromalacia, runner’s knee. Whatever the name, the tissue that badly needs attention and repair is often the same: cartilage.

My wife’s hurting knee, proclaimed “normal” by her doctors, made a familiar crackling noise. A surgeon who cuts into a knee with bone spurs, or abnormal looseness, frequently finds significant cartilage damage. Certainly knee joints are complex, and many things can go wrong with them apart from cartilage defects. Still, if the critical shock absorber that’s called on constantly to withstand loads doesn’t work well, a joint doesn’t stand much of a chance.

That means a lot of us knee pain sufferers face the same questions: Is it possible for damaged cartilage to get better? If so, how? Those are the big issues I grappled with.

The exact details of what I did to get better may not be relevant to others. I walked a lot to bathe my joints in gentle, high-repetition movement. That may not make sense for someone who struggles to walk, but who rides a stationary bicycle with ease.

But somewhere above the level of fine detail, larger lessons became clear. “Knee joints need motion” is one. This doesn’t immediately apply to a joint swollen to the size of a soccer ball, but to become healthy, knees ultimately need to move more, not less. “Listen to your knees” is another. That means so much more than “If it hurts, don’t do it.” If you wait until it hurts, chances are you’ve already screwed up.

You don’t have much good to say about the standard physical therapy program for bad knees that emphasizes building up leg muscles. So that just means it didn’t work for you. Meanwhile, why not acknowledge that it does work for eighty to ninety percent of patellofemoral pain syndrome patients.

If this were true—if the standard treatment worked for that many patients suffering from patellofemoral pain syndrome—it would be impressive for sure. (Experts do give rates in that range.) Such a level of success would help validate the “muscle-first” approach and suggest that the medical community has a good understanding of the condition and how to treat it.

That’s not the case, however. The medical community doesn’t understand patellofemoral pain syndrome well at all. Just listen to a few informed voices:

“Despite its prevalence, there is no clear consensus in the literature regarding terminology, the aetiology or treatment for [patellofemoral pain syndrome].” That’s from a July 2006 article in the
New Zealand Journal of Physiotherapy
. “It is a difficult syndrome to treat,” the Canadian Physiotherapy Association notes on a Web page. “Managing patellofemoral pain syndrome is a challenge,” observes the
American Family Physician
journal.

Granted, standard physical therapy does sometimes succeed, if not eighty to ninety percent of the time. If it’s a failed approach, why does it work at all?

The answer can be best appreciated, I think, by comparing the two main philosophies I’ve outlined in this book for treating bad knees.

A “muscle-first” approach represents standard physical therapy. When physical therapists design a program that focuses on exercises in repetitions of 20 or 30, not 1,000 or 2,000, they’re “muscle-first’ers.” As I’ve noted before, their favorite maxim is “Strengthen the quads.” A “joint-first” approach emphasizes strengthening the knee first and foremost, and the muscles later, as the joint becomes able to tolerate higher stresses.

(A quick aside: I’ve often wondered if the dominance of “muscle-first” thinking stems from a human bias to prefer solutions that draw on knowledge that we have the most confidence in, regardless of its direct relevance. Joints are somewhat mysterious and complex; it’s not immediately apparent how to improve the functioning of one. Comparatively speaking, muscles are simple and responsive. We know how to make them stronger. We know how to stretch them too.)

Now what happens when these different philosophies are applied to actual treatment of someone with hurting knees?

To begin with, a physical therapist in either camp will do some good by steering an athletic patient away from whatever activity prompts symptoms: running, playing basketball, tromping up the sides of mountains. The bad knee is being overworked. Lighten its daily load for relief. Modifying activity alone may account for a certain number of patients getting better.

So score that a win for either side.

Next comes a recommendation for some kind of exercise program. Here the two schools of thought diverge in a significant way. A “muscle-first” therapist may prescribe such low-repetition exercises as leg presses and wall slides, along with cycling. A “joint-first” advocate may agree on the cycling, a high-repetition activity, though not the others.

Now here’s the interesting thing: for patients whose knee joints aren’t too weak, either “joint-first” or “muscle-first” therapy may lead to similar rates of success. While doing twenty leg presses may not be joint friendly, if your knee is strong enough, it may not be joint unfriendly either. So standard physical therapy may work just fine for mild patellofemoral pain syndrome.

 This leaves the more difficult, even chronic cases, where a weak knee joint becomes easily irritated or inflamed. This is where, in my experience, “muscle-first” treatment reveals its flaws and unravels. In fact, it can even be counter-productive and result in further damage, as happened to me.

A “muscle-first” program does sometimes work, but it can be very dangerous when it doesn’t. The patient pays a high price in pain and frustration.

Now for a final blast of powerful skepticism:

You are very optimistic that knee joints can get better, that cartilage can improve. But so often, knee pain turns into a life sentence of misery. People don’t escape it. So why aren’t there more good stories to be told? Why do so many people fail?

I think the reason is fairly complex.

Let me start with a baseball analogy.

Imagine a pinch hitter going into a baseball game in a do-or-die situation. It’s the last out of the last inning. His team trails by one run. He needs a hit to knock in the runners on second and third. He squares off against the opponent’s ace pitcher, then looks up at the scoreboard. His jaw drops. It shows he already has two strikes and he hasn’t even swung the bat. One more strike and he’s out, then it’s game over!

During my recovery, I realized how apt this analogy was for knee pain sufferers like me. It’s as if, like that pinch hitter, we’re on the verge of striking out because of circumstances beyond our control. Articular cartilage has no blood supply to aid in healing: strike one. It has no nerves to send signals when damage is being done: strike two.

A batter can still succeed when he’s in the hole, down two strikes. The key is, he needs to be smarter. He can’t just swing away with abandon. Victims of knee pain need to be smarter too. Specifically, they need to devise a long-term plan to get better.

That rarely happens though, I suspect. After they first experience pain symptoms, they often waste a lot of time, just as I did. They flounder around. They try different pills and exercises. Sometimes the bad knee feels better, lulling them into a false sense of security. Maybe they shrug on a backpack and join that Saturday afternoon hike, or jog a few miles with a friend. Their knee swells that day or aches the next. Over time, if they suffer enough setbacks, their knee grows much worse.

At this point a good plan becomes a necessity, not a luxury. Really bad knees don’t handle mistakes too well. They require a lot more patience and determination.

Unfortunately, by this time, these owners of painful knees have lost hope. Instead of a plan, they possess only a glum desire to forestall a total knee replacement for as long as possible. They cling to props that allow them to live as normal a lifestyle as possible. If their knee swells after they walk down the stairs, they don’t choose to live on the first floor until they can strengthen the joint enough to handle steps. Instead they pop a few Advil and try to ignore the pain.

Abuse a knee joint long enough, and it will change in ways that throw up further hurdles to getting better. Bone spurs form and inhibit a normal range of motion. The tibia broadens to help the overwhelmed cartilage support everyday loads, also restricting motion eventually.

Such structural changes can greatly reduce the likelihood of healing. In one Australian study, only a couple of subjects who had bone spurs also had fewer cartilage defects after two years. Seven times that number had more defects.

Then there are disease processes in the joint that wreak their own havoc. Doing the right thing for cartilage may not always be enough to arrest these harmful changes. Biochemically, what’s going on inside bad joints is complicated. Still, my own experience left me heartened on this point. The proper amount of exercise appears to have many benefits for knees well beyond what it does for the cartilage.

Finally, what I think is the biggest reason that bad knees often don’t improve: an epidemic of wrong thinking. Faced with cases of stubborn knee pain, many doctors opine, “Your bad knees will never get better.” That negative verdict firmly puts a ceiling in place. After that, experience not so surprisingly corroborates expectation.

I spent a long time pondering why so many orthopedic doctors snuff out hope, when there is a good, uplifting story to be told about the ability of cartilage to adapt and even thicken. Maybe they aren’t aware of the studies that I read, many published in the last five years. Maybe they’re trapped in a hammer-looking-for-a-nail mindset: they see patients as either candidates for surgery that they can help, or everyone else. Maybe, on some level, they’re influenced by billion-dollar drug companies that have a dog in the fight, in all that lucrative arthritis medication. Maybe they do think that patients can get better, but they lack confidence in how this occurs, and so keep silent, so as not to raise anyone’s hopes too much.

Or maybe they honestly do believe that bad knees don’t get better. I can understand why. Achieving real, lasting gains is hard. It’s not hard in the way that pushing a boulder to the top of a mountain is hard. It’s hard because of the patience required.

Still, when “hard” becomes a synonym for “impossible,” that’s a tragic error. In one year, I made great progress in healing my knees. Here’s a comparison:

When I started, I couldn’t stand comfortably in one spot for more than a few seconds without my knees burning. I usually had to sit with my legs extended and elevated. My walking was slow, and with each step, I was conscious of my bad knees. I tried to avoid bending them when picking up something. The way my knees felt would usually worsen, sometimes by a lot, over the course of each day.

When I finished, I could sit normally in a chair for hours without a problem. My walking was stronger and faster; I could hike five miles through hills without symptoms. My knees no longer weakened as the day went on. My leg muscles felt stronger, and more important than that, the joints themselves felt stronger.