My Arthrofibrosis story

My life (written anonymously) in retrospect is divided into segments of “before the accident" and “after the accident” as it was a defining time in my life, with longstanding repercussions.

I was very active, a dancer, a runner - a life no one would describe as sedentary as it is now. I had always led a dynamic lifestyle, welcoming of any challenge both personally and professionally. Up until my injury I was a marathon runner, having completed just two full marathons but would sandwich in 6 mile runs at the beach after 12 hour-16 hour days at the hospital, where I worked as a physician assistant.

The Precipitating Incident

On the night of the accident I was crossing the street in the crosswalk when I was struck by a car going about 40 mph. At least that’s what I was told as I was hit in the head as well and don’t remember events too well. I woke up with my jeans being cut off of my body and blood dripping down my face as the doctor was suturing up the laceration on my forehead. My left knee was feeling pretty bad. I knew the routine, as this was what I typically did to other people, only this time I was the patient.

I don’t remember much of the first night in the hospital, just the physician telling me that I had broken my fibula and likely had a ruptured ACL, but an MRI would need to wait until morning and I would likely require surgery, Firstly, however, I would be admitted to the ICU because of the head trauma and concussion, just as a precaution.The MRI confirmed the diagnosis, I had a completely ruptured ACL, torn my lateral collateral ligament and broken my fibula.

I selected a surgeon who had received the majority of recommendations from our nursing staff. Upon consultation, my surgeon decided that given my age and otherwise good health I was a good candidate for a human cadaver graft, and the timing of surgery was important as there was presently too much inflammation and a fracture to heal prior to embarking on surgery. Surgery was scheduled for 6 weeks out, in his outpatient surgery center. I was trained on additional isometric exercises by my physical therapist and coordinated home PT in the intervening weeks. I was given partial weight bearing status with a walker and worked with my PT 3 days week.

Surgery and Non-typical Pain

The day of surgery came and I checked in. It felt very impersonal, like some type of assembly line protocol, which began with the anesthesiologist approaching me to perform a nerve block, without so much as a greeting or a one minute introduction. I stopped him and told him I was going to forgo the popliteal block, having had a bad experience with an ankle surgery in the past. He argued his case, I explained no thank you and soon I was wheeled in for surgery.

I awoke in severe pain. I was familiar with pain and felt I had a high pain threshold. What I was experiencing was not normal. This was an unusual amount of pain. Certainly they did not expect me to just go home and manage on my own? Other patients were groggy but getting into wheelchairs and getting wheeled out. I was not in that category. I was not able to move. Why my postoperative experience was beginning so disastrously I can only postulate, but it became clear that I was not going be able to discharge directly home but instead would benefit from an overnight stay in the adjacent hospital.

At this time my surgeon tells me that “it was pretty bad in there” referring to the ruptured ACL and mentions “oh, I had to do a meniscectomy too”. I was shocked as the MRI didn’t mention that the meniscus was not intact, presumptively it was overshadowed by the ruptured ACL. This was upsetting for me as I wanted to be able to run and go about my usual exercise habits, and without the meniscus there I figured I would be rubbing bone on bone and find these exercise habits difficult. That alone was a blow. Despite all of this I left the hospital the next morning, with instructions for home physical therapy.

My physical therapist arrived the next morning and we began the early phases of knee mobilization and early knee rehabilitation as indicated for my ACL reconstruction and meniscectomy. We did exercises primarily focused on passive range of motion, isometrics for the quadriceps and gastrocnemius muscle groups. She instructed me in patellar mobilization gently and almost so innocuous as to wonder if we were engaged in anything at all.

Rehab starts to go wrong

About two weeks postop, a new physical therapist was sent from the agency with a PT assistant as well accompanying her. After introductions were made we began with PROM (passive range of motion), then AROM (active range of motion) and AROM against mild resistance. Without warning she then began what she described as patellar mobilization. I was seated in bed, with my knee extended out as far as I was able to extend, approximately 5 degrees off straight. The physical therapist then stood above me alongside the bed, and placed one hand over the other similar to the stance and posturing one would assume if he/she were going to perform CPR. She pushes my patella deeply down with all of her body weight and begins to grind inferiorly and superiorly.I was becoming very visibly uncomfortable, when something “snapped” and a large “pop” was echoed. All three of us in the room jump and appear startled. I reflexively pushed the physical therapist away from me, in a protective manner. Tears come to my eyes and my knee swelled up like a balloon. After that I was in terrific pain, no amount of ice or pain medications were able to alleviate the pain.I phoned my surgeon who was “unavailable”. I explain what has happened to his nurse, who was very kind, and stated that she would discuss the events with him and get back with me. I assumed he was going to want me back in for evaluation immediately, but she relayed the message to me the following day, to “make an appointment with a pain medicine physician”.

It was clear that I was on my own to figure out what had happened to my knee. I made an appointment with a pain medicine physician, who felt that maybe I could have a postsurgical complication or popped a suture? He suggested an MRI to see if the graft was intact. I selected a new physical therapist and my surgeon gave orders to the new PT for my rehabilitation plan. I was clearly stalled in my knee rehabilitation. My knee remained swollen and painful, similar to when I was initially injured. The MRI my pain medicine doctor ordered just showed a huge knee effusion and partial meniscal tear that was not previously seen on pre-operative MRI.

I made an appointment with my knee surgeon to determine what to do, he made light of my symptoms and made me feel as though I was “a whiner” despite the fact that there were documented new findings on my MRI and I had stalled in my physical therapy. He simply stated “these things take a long time” and “you should buy a stationary bike”. I continued with physical therapy as prescribed but at a less aggressive pace. The pain became worse and my whole knee was numb and tingling to touch. It would turn pale and be excruciatingly painful.

I consulted my surgeon again, after another month of this. He reiterated the same advice about “things taking time” and encouraged me to continue to see the pain medicine physician to manage my pain and to continue with physical therapy. At no time did he mention arthrofibrosis, or CRPS - nor could he explain the event that had occurred with the PT that day 3 months prior.

How have things ended up? I have constant pain with any movement involving that knee. I am no longer able to run. Walking even more than a block is difficult. My knee swells up with minimal activity. I am 48 years old but had always been mistaken for at least a decade younger. Now my gait is limping, I have an extensor lag, cannot dance or do an aerobics class as I once enjoyed. I have subsequently gained 50 lbs since going without my running and been diagnosed with diabetes.I have paid cash to see the top Orthopedists, who operate on famous basketball players, to determine how they can help me. I have been given the run around. No surgeon wants to be associated with a complication or “clean up anyone else’s mess” so to speak. My life has been turned upside down. I cannot stand on my feet like I once had for work, and was forced to assume a “desk job”. My doctor diagnosed me with CRPS, or Complex Regional Pain Syndrome. I have undergone several lumbar/sacral nerve blocks but they only help for short periods and relieve the pain by about 30%.