My Arthrofibrosis Story

My name is Lisa and I have suffered the agony of arthrofibrosis. I decided to start this blog for several reasons. 1) Because I have to give the Reader's Digest condensed version whenever someone inquires as to why I am walking with a cane.  2) I tire of hearing that I should be grateful because so and so has a condition deemed to be worse than mine. 3) It's cathartic to get it all out. 4) If anyone reads this and can relate, maybe they'll find a doctor who can help them before it's too late. 5) I'm sure there are reasons I haven't thought of...

Okay, I might as well start from the very top. When I was a child many years ago, (I don't recall my exact age at the time) I stepped onto the back steps of my house and my right knee popped out of place, which I have since learned is called subluxation. Throughout my teen years and into early adulthood this happened several times, and it actually fully dislocated at least once that I can remember. At the age of 20 after popping my knee out while sleeping my OS performed a lateral release. I was in college at the time, so it was a bit difficult to say the least. I had trouble getting my ROM from the get go, and the OS said that I "needed to take more pain". Shortly after that, my physical therapist told me to get on my stomach on the table and proceeded to hop up behind me, grab me by the ankle, and put all of her body weight onto my leg. She did this twice. I screamed and cried and begged her to stop, but she didn't. I now know this is called manipulation, but it wasn't even performed with the benefit of anesthesia. I never went back to PT again. I used the gym equipment at school, pulled on my leg with a belt, used ankle weights and whatever else I could think of to build up my muscle. I could see that my leg was smaller than the other one for years afterward, but over time the muscle built back up. I did step aerobics like a maniac, I walked a lot, and kept myself fit. My knee really wasn't an issue for me for many years. I could pretty much do whatever I wanted to do, and it didn't even hurt.
Fast forward to January 15, 2010, less than 2 weeks after my 42nd birthday. I wasn't so fit anymore, so I decided to use a Wii game to help me get back into shape. I was doing a lunge with my right leg behind me, and as I came up my knee exploded. I heard a loud pop and crunching and fell to the ground. I got the name of a few sports injury places, and got an appointment with the first doctor that could see me. I had totally ripped my MPFL off the bone, and my whole lower leg was filled with blood. I was fitted with a hinged brace set to open up to 90 degrees and sent home without any further instruction or plans for PT before the surgery that was recommended. Five weeks later the OS anchored my ligament back onto the bone.
Right away I ran into trouble again. For some unknown reason, the pain was absolutely excruciating the first time I ever tried to bend my knee. They put a "playground" ball under my knee and tried to bend my knee over it, but as soon as the ball hit the back of my knee it was like every pain receptor in my knee was going off like fireworks. The immobilizer brace irritated my incision to no end, it felt like I was being stabbed over and over again. After a few weeks my PT must have said he'd given up on me, because I was unexpectedly handed over to another one. He treated me roughly and hurt me so much that I cried. Once the pain got going it would just accelerate, even after he stopped trying to bend it. He yelled at me, saying, "Lisa, you're going to have to take some pain if you're going to get better! I'm not even bending it right now!" I yelled back, saying "It's my pain!" I was so embarrassed, angry and felt ashamed. My husband called the office and said we wouldn't be coming back. They freaked out and agreed to put me in the care of another PT who they thought would be able to help me.
I have nothing bad to say about the woman who tried for over a year to help me with my physical therapy. She respected my feelings, worked with my pain, she comforted me when I cried out of sheer frustration. My OS, on the other hand, was an absolute jerk. I don't doubt that he wanted me to get better, but he would blame and shame me repeatedly. "I've never seen anyone have this much trouble." "You're getting worse, not better." (with no attempt to find out why, just the implication that it was all my fault)  After 3 months and only having 35 degrees flexion, he did a lysis of adhesions and MUA. He removed the anchor, because he said it was sticking up, or "proud" and thought it might be irritating me. (perhaps that was the source of the severe pain?) I was put on a CPM for hours upon hours at home, but my ROM continually backslid from 114 degrees right after surgery to somewhere around 55 degrees. I specifically asked the doctor at the time if he found a lot of scar tissue in my knee, to which he replied "No." This is important, as you'll find out later. Eventually I was able to get to about  90 degrees with lots of stretching and pushing. My whole leg shriveled up, so the weakness caused its own problems. It took me over a year to be able to do a straight leg raise.  I only have about 50% of the cartilage left under my patella, so the arthritis pain was quite painful. My TENS unit was on literally all day. I'm surprised I didn't get electrode burns. Getting around became so difficult I stopped going anywhere except for PT. Since I had pain that wasn't typical for someone who had undergone the same type of surgery the OS kept throwing out the words, Complex Regional Pain Syndrome. I was doomed after that.
We lived in a tri-level style house, which means it had two sets of stairs, so my house was no longer a home to me. I would go up the stairs one at a time, but putting weight on my leg to come down was very painful, so I lowered myself onto the floor with a piece of furniture and bumped down the stairs on my rear end. I seriously entertained thoughts of pushing myself backwards as I lumbered up the stairs, but I cynically figured I'd end up paralyzed, not dead. 
By the spring of 2011 I had given up on getting help from my current OS, so I began to talk to my PT about getting opinions from other doctors. She pushed the OS to look into referrals for me. At my appointment in March 2011, he said he knew I wanted another opinion so he grabbed one of his colleagues and unceremoniously dumped me on him. He made a big show out of ordering new x-rays and that was that. The new OS was cordial, at least to my face. He wanted to talk to my PT, so he grabbed her out of the therapy room and asked her what she was doing with me. He chastised her for having me attempt to do step ups, and said very loudly, "She only thinks the pain is coming from her knee." At that moment I knew I had to find a real doctor who would take me seriously. I  requested all of my patient records, and as I was reading the notes from the surgery in which the first OS had told me he didn't see an excessive of amount of scar tissue, I read the words, "There is scar tissue everywhere in the joint." I felt betrayed.
I live in Ohio, and I knew the Cleveland Clinic has an excellent reputation so I made the trek with my husband and son to see a very prestigious doctor in the hopes that he would be able to tell me what was going on. He did not even examine my knee at all. He merely said that if I wanted a new knee he could do it, but he thought I was too young. My mind was blown. I told him I wanted to know what was wrong with me, and he said he only did replacements. Now, for a month prior to going to Cleveland my husband and I called a few times to explain my situation thoroughly to the intake nurse and the staff in the orthopaedic department so that I would be directed to the right specialist. We complained to the receptionist, and she got an appointment for me with a doctor at one of their satellite campuses. He noted the pain I had when he palpated around my knee, and immediately diagnosed me with CRPS and said I should see a pain management specialist. 
I had been lurking on this website for some time, and noted that Dr. Frank Noyes was mentioned as being an excellent surgeon. His office is only about 20 minutes from me, so I made an appointment. His Fellow did a thorough exam, and then Dr. Noyes came in. He assessed the situation, and told me that I had arthrofibrosis. He explained it to me, and said that it was a serious condition, but he also said he had seen hundreds of people like me. He said he knew what to do, but he couldn't guarantee the outcome. He said the last thing I needed was more surgery, but that if we did nothing my disabled condition would be as good as it gets. I was nowhere near strong enough to have surgery, so we set up an appointment for physical therapy with his excellent staff. I cried on the way home because someone had finally taken me seriously and given me a name for my condition.  Three months later I was at the threshold where my knee would tolerate the surgery, and he actually complimented me on how much progress I had made. I looked at him incredulously and told him no other doctor had ever said anything like that to me before. He probably thought I was weird!
In the meantime, we had decided to sell our house and move into a ranch style house so that I could live comfortably in my own home. It even has the laundry room on the main floor, so that I don't have to go down to the basement unless we're hiding from the threat of a tornado. We moved in last September and my surgery was October 19, 2011, exactly 20 months after the initial surgery to repair my ligament. I watched in amazement as I lowered my leg over the table the day after surgery and with just a little push from the PT it bent to 90 degrees. I used an ERMI Flexionator at home in addition to all the PT and by February 2012 my flexion was fully restored to 140 degrees. Dr. Noyes asked me to get on here and let others with AF know that there is hope that they can regain all of their motion, even after such a long time.
Right now I am struggling with regaining my strength after having severe muscle atrophy from the AF and having 3 surgeries in under 2 years. The patellar arthritis complicates things greatly, as doing leg extensions is quite painful since my quads are weak, and I'm not sure how much the pain will be relieved until I get stronger. Good grief, I've lost so much bone in my patella you can't even see it on a frontal view in an x-ray! I'm sure anyone reading this understands the vicious cycle. Dr. Noyes is willing to do a partial replacement if I'm not happy with the pain level when all is said and done. Based on my arthritis, he said we could probably wait 5-10 years, but he doesn't expect me to live with awful pain either.  I'm frustrated because I don't know if I'm working to be recovered for awhile, (10 years) or if I'm basically just trying to get my strength back for surgery in the next year or so.
I guess that's the whole story. If you've read through all of this you're a real trooper. I'll be posting more because my ordeal is far from over and I just need to get it out when I'm feeling sad and unsure about my future. Thanks for reading.
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