"Pain" is a four-letter word.

Being in chronic pain creates a lonely existence. Unless you are a sufferer, I don't believe you can even imagine what it's like. It is not visible to others, and there is no diagnostic test that will show a doctor (or anyone else) just how much you are suffering. There is no thermometer, no x-ray, no MRI to give the doctor a hint as to how to proceed. Some doctors will be quick say, "Just live with it." Some doctors won't believe you, or believe you are exaggerating the extent to which this is affecting your life.

I have suffered chronic pain for as long as I can remember, but it didn't stop my life until the knee replacement. Not only did it stop, it came to a complete standstill. The cruel irony, is that I agreed to this surgery in order to reduce my pain, and now I would gladly go back two years ago and continue on with the pain I had. Okay, I wouldn't be dancing or taking long walks, but I would be working, driving, essentially living life. I often feel as if I am in hell.

To continue with my story, I went back to Dr. D in November of 2007. He gave me some grim news. Because my knee prosthesis was infected, I would need a series of at least two major surgeries. You can't treat the infected knee replacement with antibiotics because antibiotics need to travel through the blood stream, and there is no blood flow in the device.

The first surgery would consist of the removal of the prosthetic knee. Biopsies would be performed in order to determine the organism causing the infection. The surgeon puts antibiotic spacers into the knee. Because there is no prosthesis, you can put no weight on the knee while the antibiotic spacers (two blocks of cement) are inside. As long as there is infection, the knee cannot be replaced. In addition, the patient must administer IV antibiotics to herself at home for a minimum of six weeks . This is made possible via a catheter inserted into the patient's vein. One end is near the heart, and the other comes out of the arm so that the antibiotics can be administered. At the end of the six or so weeks, the antibiotics are stopped for two or more weeks, and various tests are performed to make sure there is no sign of infection. If there is any sign of infection, the spacer surgery and IV infusions are repeated.

When there is no sign of further infection, the patient returns to the hospital for revision surgery. The spacers are removed, and replaced by a new prosthetic knee. Even after this, further biopsies are performed with the hope that all is well. If, again, there is any sign of infection, the knee will have to be replaced with the spacers again, and the IV infusion repeated.

I sat in the office trying to absorb all of this new information. I asked, "Who does this series of procedures? Do you?" Dr. D's first words were, "Well, that is a problem." Gee, what else is new? Apparently not a lot of doctors are willing to travel this journey with the patient because it requires so much work and patient care. It seems Dr. D was in the process of moving his practice and he would be unable to devote the kind of time and energy that would be needed for this process. He recommended two other surgeons, and suggested that this set of procedures should begin fairly quickly.

I made an appointment with one of the recommended doctors. Surprise! I'll call him Doctor E. If you think things can't get worse, you would be wrong.

The Beat Goes On

Anyone who has ever worn a cast can tell you how unpleasant it can be. Because it covered my entire leg, normal everyday things that everyone takes for granted become difficult. Even going to the bathroom was...challenging.

After two and a half weeks, a brownish discharge started leaking through the cast, and there was a decidedly unpleasant odor emanating from my leg beneath the cast. I was worried that I might be bleeding, and I went to the doctor. They cut off the cast, and it turned out that I had a "tunnel infection" on my knee. I went on antibiotics, and saw Doctor A a week later. The infection had not cleared up so Dr. A prescribed another course of antibiotics with the warning that if this did not clear up the infection he would have to operate.

Fortunately the infection did indeed clear up, but, unfortunately, my leg did not become completely straight, so Dr. A sent me to physical therapy to work on straightening, strengthening, and bending my leg. After a total knee replacement in June, I finally started outpatient physical therapy in the last week of September.

I truly worked very hard. The therapists tried their best to help me, but after a month or so, it became obvious that I could no longer bend my knee very well. In addition, I continued to be in a lot of pain, and the swelling was terrible. It was about three times the size of my other knee. I also discovered that many nights I had a low grade fever, so I asked the doctor about the possibility of infection. He said that if my knee were infected I would have other symptoms. He continued to prescribe pain medicine and told me it was just taking me longer than most to heal. As far as the swelling was concerned, I remember his explanation clearly. His words were, "It's swollen because it's swollen." My knee was always warm to the touch. He felt this was insignificant as well.

As December came around, the physical therapists were convinced that no amount of physical therapy would bend my knee. One said to me, "It will be difficult to justify continuing the visits because you are clearly not progressing." They were certain that while I wore the cast, an excess of scar tissue grew and was blocking my knee from bending. One of the therapists remarked, "There is nothing normal about your knee."

In early December, Dr. A suggested that another manipulation would be needed to bend my knee. He said there was no need for urgency, but I wanted this whole process over with, so the procedure was scheduled for December 24. This time I would be admitted as an inpatient, and would plan to stay in the hospital for a few days. I was hoping this would end all of my knee woes, but I was not destined to be that lucky.

After I woke from the anaesthesia, Doctor A informed me that he had been unsuccessful in his attempt to manipulate my knee. He tried, but he was afraid that the force he would need to use could break my thigh bone. He said that my only possibility of bending my knee would be through more physical therapy.

We gave it a good try. I went to pt for five times a week, and then down to three. It became clear that I would never get better. Everyone I knew advised me to seek other opinions, and so I made an appointment with Dr. B. He was highly recommended, not only as a joint specialist, but as a revision specialist. We heard several stories of how he had repaired knees and hips that other surgeons had replaced. He was known for "fixing other doctors' mistakes."

I saw Dr. B in April. He examined my X-Rays and he examined me. I gave him my history, and told him how much pain I was in. My problems were the pain, the swelling, and my inability to bend my knee.

My hopes for help were quickly dashed. Dr. B offered several pieces of advice. He noted that as it appears I get worse after each surgery, I should never consider having additional surgery on my knee. In addition, he pointed out the mottled scar tissue that was the remainder of the blister I had developed after the original surgery. He said he believed that this was an indication that the skin had almost died, and any further surgery could cause me the risk of needing very painful skin grafts. He, along with Dr. A, advised me that I needed to learn to live with it.

I was spiraling downward into depression. For the first time since the surgery, I was beginning to believe I had no chance of getting better. I was in constant pain, using a cane to get around, and unable to drive. I had been unable to work since June because the only way I could ease the pain was to lie on my sofa or bed with my leg elevated. Walking, even standing, were difficult and painful. My life consisted of watching television, reading, doing crossword puzzles. There were many days I considered suicide. What did I have to look forward to? I'd had a knee replacement in order to "improve my quality of life." My life was worse. My life was as far from normal as one could get. I was lonely, bored, and depressed. We gave my car to my daughter since it appeared I would never drive again. I cried a lot. I couldn't go shopping, couldn't sit in a restaurant unless I stretched my leg out across a booth. I didn't want to talk to anyone.

Time passed slowly, but eventually a year had passed since the surgery, with no hope of improvement in sight. In August Dr. A officially gave up. He sent me to a pain management specialist and told me, "There is nothing more I can do. I believe that any further surgery will only make you worse. Unfortunately your doubts about having the knee surgery were correct. You shouldn't have had it. I'll see you in a year. I'm so sorry."

Sorry? See you in a year? This was the official kiss-off. Now what?

I continued to see the pain management specialist once a month. I'll call him Dr. C. I don't know what I expected, but my pain started getting worse instead of better. Dr. C prescribed narcotics, switching medications and raising the doses, but nothing even remotely eased the pain. My knee became more swollen, and continued to be warm to the touch. I clearly needed help.

I decided to try once more. I made an appointment with yet another joint specialist. Yes, I'll call him Dr. D. Here we go again. I saw him in October of 2007. More X-Rays, telling my long story, examining my knee. He decided that, because of the continued pain and swelling, he wanted to rule out the possibility of infection. I needed a two-day test where my blood would be extracted, mixed with radioactive material, and then replaced into my body to see if there was any indication of infection in my knee.

A week after the test, I still hadn't heard anything, so I called Dr. D. The answer shocked both of us. This test showed that my knee was indeed infected. I made an appointment to see him a week later in order to learn my options. The news he gave me when I saw him again confirmed my worst fears.

If I could turn back time

Even after making the decision to go through with the total knee replacement, I still had many doubts. Yes, I could improve, or I could stay the same...or...I could get worse. The doctor was so confident. He was so sure I would feel better and live a "better quality of life" that I had to have some hope. I didn't believe (and still don't) that I would ever be pain free. I just wanted to feel better, to be more active. So many former patients told me how this changed their lives in a positive way. I really wanted to believe...

Post-surgical pain is never fun, but I was looking to the future. It didn't take long, however, before the problems began.

The day after the surgery, the doctor came to my room and unwrapped the bandage. There was a huge blister that covered the entire surface of my knee. Both the doctor and nurse said they had never seen anything like it. Gee, where have I heard this before? The doctor theorized that the blister developed because of all of the scar tissue from my previous surgeries. He was concerned about the possibility of infection, so I would need to see him in a week. I saw him every week over the next four weeks. The blister did gradually get smaller and then it disappeared leaving behind a rather unpleasant large red, mottled scar. This skin caused problems but more about that later.

During those same four weeks, I had home physical therapy. In retrospect, I now know that was a joke. I believe that if I had gone to outpatient physical therapy, my whole story would be happier, but until they invent a time machine, I have to live with the past and its consequences. The home physical therapist did NOTHING. She never touched me. We spent time talking about different things, and she showed me a few exercises with the instruction that I practice them several times a day. She didn't have me practice while she was there other than to have me do each one two or three times to make sure I knew how. She did not try to bend or straighten my knee. She actually spent most of her time typing onto an electronic organizer, and emailing back to her company. On her last visit, she informed me that she believed I would need a manipulation because I wasn't straightening my knee well. She also told me she had attempted to call my doctor three times over the previous two weeks to tell him I was having trouble, and to ask if she could do more aggressive therapy, but that no one returned her calls. I found this difficult to believe. If I had started this problem two weeks ago, why didn't she tell me?

On that same day, I had an appointment with the doctor.( I just realized that I will be talking about various doctors, so I will call the orthopedic surgeon who performed the total knee replacement Dr. A.) When he walked into the examining room, he said, "The good news is that your blister seems to have healed. The bad news is that you will need a manipulation to straighten your knee." I started to cry. I pleaded with him. I promised I would go to physical therapy and work really hard. He told me it was too late, and that if I did not have this manipulation soon, I would "never walk again." In addition, because he was worried that even with a manipulation my knee would re bend, he would put my leg in a cast for four to six week to keep it straight. For the uninitiated, a manipulation is a procedure, where, with the patient under anaesthesia, the doctor forcibly bends and/or straightens the leg. It is quite painful, and according to those who have witnessed it, it appears to be torture. According to Dr. A, about five percent of total knees need at least one manipulation after surgery.

I cancelled my scheduled outpatient physical therapy session, and was scheduled for the procedure in mid August, at an outpatient center. Later, Doctor A admitted this was a mistake. He should have scheduled me at a hospital. Again, hindsight is always so clear.

The manipulation was performed. The pain was so intolerable that I couldn't get up to get into the car to go home. They had to send for an ambulance to take me to the hospital, where I remained for a few days so that I could be on a pain pump. The cast covered my entire leg from ankle to the top of my thigh. It caused so much pain, pressure and blistering on my ankle, it had to be shaved down twice.

I went home and learned to adapt to this new set of circumstances. I was worried that time in a cast with my leg straight might cause me to lose all of my flexion (ability to bend.) Doctor A assured me this "shouldn't" happen. On to the next chapter of the saga.

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.