Starting at the beginning

I am a fifty-three year old mother of two. My story begins in the late 1960's when I was young teenager. I had been experiencing knee pain, so my mother took me to an orthopedic surgeon. After examining me and looking at my X-Rays, the doctor decided that my pain was due to torn cartilage and that I would need major surgery on the right knee. He would remove the torn cartilage and perform an exploratory.

It was 1970, and in terms of orthopedics, it was still the dark ages. MRI's didn't exist yet, nor did arthroscopic surgery. Doctors hadn't discovered that we need to save as much cartilage as possible in order to protect our knees in later years. So, just a month before my fifteenth birthday, I went into the hospital for this major surgery. I was there for eight days. Now (if surgery was even necessary) a person with the same diagnosis would likely have arthroscopic surgery as an outpatient.

Thus begins a long and painful journey, that even after nearly forty years, has not been resolved.

I did not feel improvement after the surgery; in fact the pain worsened. My parents took me to many other doctors in the hope of finding answers. We found that doctors were not comfortable discussing my problems , and the suggestions were usually worded as ,"You have a great doctor. You should do whatever he says." My leg was very unusual looking, because my knee turned out while my foot turned in. I was told that I had severe tibial rotation. Many many times over the years I have been told, "I've never seen anything like this before."

Even my doctor was not sure what to do. He brought me before a large panel of orthopedic surgeons, who would see and discuss two "unusual cases" every week. After my doctor told them my history, I came into the room, and they all asked me questions. They also poked and prodded my knee. I then left the room while they discussed possible courses of action.

The consensus was that my pain was being caused because the way I walked was allowing my kneecap to "slip off" causing irritation and pain. They also theorized that the torn cartilage had also been caused by the way I walked. The solution was an operation known as a "Hauser" where the doctor would cut through bone and tissue, moving my kneecap to the left even more, in order to "anchor" it. This would stop the slippage and eliminate the pain. A few years ago a surgeon told me that this particular surgery is now known to be "barbaric." He has no doubt this Hauser surgery has caused most of the problems I continue to experience.

The surgery was performed in the summer of 1976 when I was 21 years old. I had to wear a cast for six weeks and I continued to be in pain. With the increased pain and weakness, I gradually stopped many activities that caused too much pain. I couldn't walk very far, and I had to learn to drive using my left foot to brake.

Several years later, the doctor told me that, because of my structural and mechanical problems, he believed my only option was to attempt to fix the tibial deformity. They would make cuts along the bone and attach screws that would be gradually tightened until my leg was straight. There were many risks involved, and I would need a year of recuperation. In addition, my circulation was at risk. I actually considered this, but I fortunately came to my senses, and refused the option.

Life went on. I used narcotic pain medication on extremely bad days, and learned to adjust my life in order to avoid too much pain. I did, however lead a relatively normal life. I was able to work full time. I married and had two children.

In 1990, I was sitting on the floor, when my then toddler daughter jumped into my lap. We heard a loud pop and my knee hyper extended. My knee was sore and swollen. I had an MRI, and I remember the doctor's words when he called to give me the results. He said that it was hard to know what specifically was causing the new pain, since, in his words, there was "nothing normal" going on in my knee. I had a torn ligament and pieces of tissue floating around and a lot of rough edges. He said he would not be able to repair the ligament, but he decided that he could go in arthroscopically, and remove some tissue, as well as smooth out the rough edges.

I had that surgery, and nothing really changed. I continued with my life, sadly giving up activities as they became too difficult. Then I fell on my knee in 2006, causing it to swell a great deal, and increasing the pain. By this time the doctor I had been seeing was semi-retired, so it was time to change doctors.

I discovered that in the intervening years, the science of orthopedics had changed. Now you didn't go to just any orthopedic surgeon. They were now specialized. There were hand doctors, knee doctors, shoulder doctors, joint specialists, and back doctors.

I chose to see an orthopedic surgeon who specializes in knees and hips. I asked doctors, nurses, and friends for referrals. I walked into his office, and my first words to him after he introduced himself were, " I just want you to know that I will never have knee surgery again." He smiled and sent me for an X-Ray. When he returned to the examining room, he said, "I'm sorry, but you need a total knee replacement. You have no cartilage. Your knee is bone on bone and you have bone spurs." I explained my history and told him why I believed that any surgery could only cause more problems. I told him that I have many different kinds of pain, and that I believe there are complex reasons for all of them. I told him that I didn't believe that one surgery would address all or even most of the pain. He said that I would never be completely pain free, but that this surgery would "significantly reduce" the pain. I was shocked to find that I left the office actually considering this procedure, and I pushed away the little voice telling me that I would be making a big mistake. I spoke to many total knee recipients, and I received overwhelming testimonials of how much their quality of life improved.

I thought and thought about the possibilities. I would be able to take walks with my husband. Someone told me, "Your children are older. Don't you want to dance at their weddings?" The little warning voice in my head was being drowned out. I scheduled and then cancelled the surgery in 2006. The doctor told me that I could postpone the surgery, but that I absolutely needed to have it eventually, and that it made sense to improve my life sooner rather than later. I ended up making the fateful decision to have my knee replaced in June of 2007. My relatively normal life ended with that surgery.