Living With Chronic Knee Pain: A Cautionary Tale

Living With Chronic Knee Pain: A Cautionary Tale

Linda Rubin

I broke my right leg in massive and surprising ways the year I started college. It was August of 1969, two weeks before the Woodstock Festival and I was within miles of the site, visiting a friend whose family was summering in the Catskills. My first night there, a simple trip-and-fall snapped my right tibia and fibula both in two.

I was taken to a local community hospital where the physician on duty was a part-time resident. He wrapped my leg in plaster, using only gravity to align the bones. It was probably his first time setting a fracture. Little did I know that young doctor’s inexperience would affect me for the rest of my life. I refer to that fateful time as the “beginning of the end.”

For two weeks I lay in that hospital, feeling my bones banging around inside the cast. My parents and I drove back to New York on the same road as all the hitchhiking hippies going home from the festival.

I lived 10 months in an ankle to hip cast, my entire college freshman year. The bones were imperfectly aligned and calcification of the fracture took forever. I hobbled around campus, my freak flag flying, wearing an English bobby cape to accommodated crutches, my cast painted purple. I often looked down at the thing thinking, “This is not supposed to happen to me. We don’t break bones in this family.”

Linda in her purple cast

In June, finally, sweet relief! The cast was sawed off and my leg was released. The task at hand then became reviving my withered muscles. In those days, the physical therapist came to the house wearing a navy blue uniform, like a public health officer. She’d handcrafted the leg-lift weight herself, sewing a bag from mattress ticking and filling it with sand. Since she carried that device from patient-to-patient she recommended I make do with a knotted nylon stocking filled with two cans of peaches. The trouble was when a nylon stocking is pulled taut by cans it gets very skinny and feels like it’s going to slice right through you. I never wanted to do the leg lifts. My quads stayed flat.

Living in Traction

A scant four months later, an unfortunate slide on a rain-wet ramp at school spun my leg out behind me and ended in a spiral fractured femur. Same leg. I thought I’d been through it all, but this time I landed in traction. And my sophomore year of school ended almost as soon as it began.

Do you have any idea what traction is? Neither did the ward’s head nurse. The orthopedist used something like a nail gun to drive a steel post horizontally through my tibial tuberosity, just below the knee. Twice… till they got it right. The post was the fulcrum for a system of weights and pulleys built into a rack suspended above the bed. The object was to keep the bones aligned while the fracture was calcifying. The weights were also pulling on the tendons and ligaments in my knee, but that didn’t get any attention at the time.

After three months in the hospital, literally attached to the bed, I was released to home healing in a body cast. Everything you see in cartoons was still being applied to patients in the 1970s. I was plastered from chest to ankle on the right and down to my knee on the left. They have to immobilize surrounding joints when casting a complete fracture and I guess to hold a hip they had to hold both hips.

I have never stopped being pissed that a classmate who was hit and dragged by a car at that time, was up and walking long before me. She got surgery. I did not.

Rehabilitation

As you can imagine, by the end of two years I had about as much muscle tone as a lox. The first stage of rehab was just sitting up. I actually loved the arcing back flexes when I could finally do more than just lift my head. It was such a pleasure to finally stretch. I had always been able to reach back and grab my ankles as a kid. They used to call me double jointed. Those days were gone. The good news was I had no problem working my way up to 200 sit-ups a day.

I applied my best efforts, but while I was a great runner as a kid, I wasn’t any kind of athlete. I didn’t have enough discipline or coaching to get back to normal. I stayed dependent on a cane for probably longer than necessary while my muscles remained emaciated. By the late ‘70s my right knee was always swollen.

I started consulting a Boston rheumatologist and remained under his care for nine years. He had me on a daily regimen of Naprosin before I ever heard the term NSAIDs. No one told me it was not a great idea to take ibuprofen for my menstrual cramps at the same time. As you can imagine, my gastric lining eventually gave way. I can’t swallow so much as a baby aspirin now.

I was always wrapped in ace bandages. Lucky for me my great aunt was a staff sergeant at Walter Reed Army Medical Center. She loved sending my family gift boxes full of hospital supplies: hemostats, surgical scissors, dark green cans of army anti-fungal foot powder and lots and lots of ace bandages. They constantly come undone and the metal claw-end clips fell off and disappeared. Let me tell you, the neoprene knee brace was one of the greatest inventions of the 20th century. I own half a dozen of them.

Arthroscopic Surgery

Fast forward to a new doctor in a new city: Los Angeles, early 1990s. My pain was getting so bad I was crying during Pilates. Arthroscopic surgery was getting a lot of publicity. I wanted one. My doc was not too keen about it, but she ordered an MRI. She was skeptical anything would be discovered. In those days, you had to get all kinds of clearance from the insurance company for such a new and expensive diagnostic tool.

Quelle surprise! The MRI showed a torn meniscus. I had to get that surgery quick because my PPO insurance carrier was dropping my group. I was not going to have surgery at an HMO. I showed the rheumatologist the list of participating providers. She pointed to one and I set up an appointment. His current specialty is hand surgery. Maybe back then he was a generalist who took a weekend arthroscopy seminar. He excised my lateral meniscus. Cut it right out, leaving my lateral compartment with no cushion between the condyles. This was very, very bad.

It’s since been proven that athroscopic knee surgery provides no more relief than physical therapy or a placebo procedure.

Ronald P. Grelsamer, MD, writes in “What Your Doctor May Not Tell You About Knee Pain and Surgery” that MRI settings can make it look like everyone has a torn meniscus. But I saw the photos from the arthroscopy. My meniscus was totally ripped. I expected it to be mended, but no such luck.

I was pain free for a little while but not long. My bones were grinding each other down. It was osteoarthritis and I was developing a valgus deformity. When I stretched my leg straight out in front of me it veered off to the right at the knee. The rheumatologists and physiatrists were throwing up their hands and giving me orthopedist referrals. There could only be a surgical solution. I got a handicap placard for my car.

Knee Replacement Surgery

The surgeon told me I needed knee replacement but since total knee prostheses were only expected to last about 15 years, they did not want to implant one in a patient in her 40’s. Partial replacements were regarded as trash and not even considered. So they attempted less invasive measures.

It began with Synvisc, hyaluronic acid derived from rooster combs. A regimen of three injections spaced out over six weeks was supposed to replace the missing cushion of synovial fluid in the joint and reduce my discomfort. It was painful and ineffective.

Physical therapy was prescribed. I went again and again. On the side, I saw homeopaths, osteopaths, acupuncturists and chiropractors, a Rosen worker, a Heller worker and a Feldenkreis practitioner. I tried the candida diet and the elimination challenge diet. I eschewed nightshades and gluten. All to no avail.

My knee was always on fire. I couldn’t run, jump or dance. Couldn’t walk farther than a couple of blocks. I bought a set of Swedish walking poles and used them like crutches for trips home to New York. I kept a cane in the car and relied on it often. I hired a personal trainer with a master’s degree in physical therapy to treat me at home twice a week. For seven years.

The orthopod put me in an unloader brace, a bulky contraption of molded metal and plastic usually used for temporary support ahead of knee replacement. It cost the insurance company around $1,500. I wore it for five years.

Nothing changed. The knee kept hurting, the muscles didn’t grow. “Reflexive atrophy” the rheumatologist told me. Muscles around an inflamed joint shut down and don’t respond. So all of my lifting and squatting and stretching and agony resulted in a big nothing. By then I felt like a full-on invalid. I couldn’t do what other people did. I couldn’t travel or play sports. And that self-identification as disabled spread to all aspects of my life.

By the beginning of the 21st century, some improvements in surgery brought orthopedics out of the Middle Ages. Young surgeons were doing unicompartmental replacements. These partial knee devices were supposed to last 20 years and be easier than total knee replacements to revise if they failed. I started interviewing orthopedists. There would be no quick decisions this time. After half a dozen interviews, the first guy I met who was willing to do the operation could count his previous procedures on one hand. I politely declined.

“If you want to go to the experts,” he told me, “you can contact…” and he named an orthopedist I’d consulted in Boston in the early 1980s. So I did. I still had his bill in a file and he found my records in his archive. I would have flown back to have surgery at Massachusetts General, but the doctor had trained a surgeon currently working in Santa Monica. Light at the end of the tunnel!

This fellow was also young but he was all over the partial knee. Did them all the time. He was also a renowned expert at revising other surgeons’ failed procedures. I had supreme confidence.

Walking Again Without Pain

The surgery was short and sweet. I was hospitalized over a weekend and then released home to my 3-story house. My first day back I was running up and down the stairs, doing laundry. For the first time in as long as I could remember I was feeling no pain. I could extend my leg out and it went mostly straight and it didn’t hurt at all. I was in heaven.

The physical therapist once again came to the house. This time I was determined I would comply. However we were both a little over-zealous and the resulting insult to my soft tissue set back my recovery by a few weeks. Other people have returned to work from this procedure after a week or two. I had to wait six. But I’m healed.

Now, my knee never hurts! I still don’t run or jump because I don’t remember how and neither do my muscles. Besides, I think the prosthesis will last longer without the stress. I have to take antibiotics before every dental appointment because apparently saliva bacteria can be deadly when you have metal parts. But I can walk again and without pain.

I set off airport metal detectors and always get patted down. I hope to live longer than my titanium knee, but if the prosthesis fails I am confident that the technology will exist to repair it.

The moral of this story is: don’t get arthroscopy. I can’t speak to surgical fracture reduction but I wish I’d had some. And always do your physical therapy exercises. Otherwise, it will all only get worse.

Linda Rubin is a multimedia web journalist with a long history in television news as an Emmy award winning video editor in Los Angeles and Boston. Linda developed and programmed a cable health channel near Boston and helped many government and social service agencies in New England figure out how to use their cable franchises to bring health and wellness information to their local constituents. Having experienced myriad orthopedic injuries, Linda has a special interest in bone and joint conditions as well as pain management.

Authored by: Linda Rubin

There are 2 comments for this article
  1. autoimmunepain at 8:59 am

    What an inspiring story. Thanks for the lift!

  2. Sandra Coopersmith at 7:33 pm

    What a wonderfully-written true-life horror story! But I’m so glad it had a happy ending. When the writer sustained a second injury to the same leg, I actually winced. She has such a relatable style, and it brought back memories of my own injuries, including some rather bizarre ensuing circumstances. And the info about the questionable benefits of arthroscopic knee surgery was news to me, so I’ve filed it away for possible future reference. That’s very good info to have.