It took me three months of physical torture before I diagnosed my problem: I was suffering from one-size-fits-all medicine.
I am one of more than 750,000 Americans who this year will have a total knee replacement, the most common orthopedic operation. Most people do well with the standard physical therapy protocol, but there are many who have a rough rehab.
My knees went bad as a teenager because of OCD — not obsessive-compulsive disorder, but a rare condition known as osteochondritis dissecans. It wreaked havoc on both knees with plenty of pain and frequent dislocations, ultimately leading to extensive surgery just before I started medical school at age 20.
Over the next four decades, I progressively curtailed activities including running, hiking, tennis and even elliptical exercise, while increasing my reliance on anti-inflammatory medications to deal with the pain. After injections of steroids and synovial fluid directly into the joint failed, it was time to consider getting a new knee. My orthopedist told me I was a “perfect candidate” being relatively young (I was 62), thin and fit; he said the only concern would be a risk — 1 to 2 percent — of infection. Nothing else.
Physical therapy typically starts at home the day after surgery. It is intense. The goal is to achieve as much range of motion in the knee as quickly as possible to prevent scar formation within the joint. After three weeks of home sessions, I continued physical therapy at a highly regarded facility recommended by my orthopedist. The PT staff put me through the standard protocol, which includes preprinted sheets of daily exercises to do at home.
From the first day of physical therapy, I experienced pain beyond the reach of the prescription painkiller oxycodone. I told myself “no pain, no gain,” but I had a tough time achieving any meaningful flexion until I put a stationary bicycle seat way up high; even so, I screamed in agony for the first three pedal revolutions.
When swelling persisted and my range of motion at four weeks post-surgery was far from adequate, my orthopedist prescribed eight more weeks of intensive physical therapy: one-hour sessions, three times a week at a PT facility, along with extensive home exercises. I came to nickname this physical torture. After each session, with a therapist forcefully bending the knee as far as it could go, the swelling increased and the knee turned purple — on top of giving me profound pain. On many occasions, I could barely walk out of the facility. I continued the required regime of torture at home.
The pain, purple discoloration, swelling and severe “Tin Man” stiffness worsened. I couldn’t sit or stand without considerable discomfort. Unable to sleep more than an hour at a time because of pain, I became desperate. Crying spells were frequent. Searching the Web, my exceptionally supportive wife found a book titled “Arthrofibrosis,” which describes a complication occurring in 2 to 3 percent of patients after knee replacement.
I’m a doctor, but I’d never heard of the term. In reading the first pages of the downloaded book, I came across these discouraging passages: “Arthrofibrosis is a disaster” and “Trying to deal with arthrofibrosis is extremely time consuming and affects all portions of a patient’s life.” Yes, this was precisely what I was dealing with, this was my diagnosis. Notably, the book’s suggested management is aggressive physical therapy, which I had complied with to the hilt.
I was getting even more desperate. Despite my career as a physician researcher who advocates evidence-based medicine, I tried things for which there were no clinical trials to show benefit: acupuncture, electro-acupuncture, cold laser, topical ointments, curcumin and many other supplements. But I was getting worse and would have to lie prone for several minutes to get enough knee extension to walk, even with a brace on. My surgeon had little to offer except to say that by a year, the inflammation should burn out and he could go in through a scope and take out the scar tissue.
A friend recommended that I see another physical therapist, a practitioner with more than 40 years of experience. I cringed at the thought of more physical torture, but I went. In taking a detailed history, she zoomed in on my decades of osteochondritis dissecans and that I had a frozen shoulder five years ago, which meant that I have a propensity to scarring in joints.
She carefully examined my knee, which was severely inflamed and still swollen, and then recommended that I stop all the weights and exercises I’d been instructed to do and start an entirely different, pain-free exercise program, along with a course of anti-inflammatory medications. The individualized nature of this new plan, which she would have initiated immediately after the surgery for me, was epitomized by her handwritten page of instructions, not the typical preprinted handout for one treatment fits all.
In a few days, there was a dramatic turnaround. She would text me every other day to ask how “our knee” was doing. We built on the initial success with additional gentle exercises. Quickly I began to sleep normally; the pain, swelling and purple knee all ended; and the range of motion substantially improved. I had been rescued.
Most people do well with intensive physical therapy, but for me it backfired and set up a vicious cycle of inflammation. I needed a different protocol than the standard one that works for the majority. I needed a protocol for patients with histories and conditions like mine.
Ironically, while recovering and still in my bed with my knee elevated, my colleagues and I were awarded a grant from the National Institutes of Health for $207 million for the Precision Medicine Initiative, first announced by President Obama in his 2015 State of the Union address. Precision medicine, also known as individualized medicine, is usually construed as matching up one’s genetics with the right medication. But it is far broader than that, extending to who should get screened for what condition and determining which labs, scans and devices are best suited for any given patient. As my experience demonstrates, it even encompasses how physical therapy should be tailored.
In a 1969 lecture, British psychoanalyst Enid Balint introduced the term “patient-centered medicine,” the idea that “the patient, in fact, has to be understood as a unique human-being.” Almost 50 years later, we are still far from fulfilling that objective, but every aspect of health care needs to strive for it — needs to strive for individualized care.
I was extremely lucky to get an expert empathetic referral, or I’d still be suffering now. Now, more than ever, Francis Peabody’s 1927 insight reverberates in my mind: “The secret of the care of the patient is caring for the patient.”
Topol, a cardiologist and professor of genomics at the Scripps Research Institute, is the author of “The Patient Will See You Now.”