@npecksl
You may be how my surgeon categorized me as”one in a thousand”, at which point he ghosted me, leaving me alone to muddle a way out of the pain, stiffness and mental stress. This was biologically active Arthrofibrosis, or Refractory Diffuse Arthrofibrosis. Thru dogged determination, I have assembled a multidisciplinary team to address it. It is a work in progress but thus far, I have found a new doctor, who required a “go ahead” from my surgeon before touching me. Thus far I had a cortisone shot into my fibular head, on the outside of the knee and inflamed from pressure from the scar tissue putting pressure on it from above. This eased my pain. Likewise, my MCL, on the inside of the knee, is also swollen from the scar above. It is also a candidate for cortisone. Next will be an aspiration of my knee to remove fluid for relief and testing if the fluid. They will check the fluid for the possibility of a low grade infection. This is important to rule out. The aspirated knee may get a cortisone shot at the same time, at the doctors discretion. I have also found a radiation oncologist who is experienced in the use of Low Dose Radiation (LDR) to tamp down and possibly eliminate the immune response which keeps my knee warm and prone to swelling (based upon activity) . This is a series of LDR sessions (3x week for 2 weeks). Ideally, the scar tissue will become benign as a result, meaning non active Arthrofibrosis, just solid scarring, no longer warm and angry.
I also will see a Rhumatologist to address the over the top immune responses. Without the use of A.I., I would not have been knowledgeable enough to put much of this together. Don’t be shy about asking AI about any of the aspects of your knee issues as well as asking for solutions. It is essential to be your own best advocate. Be prepared for push back from doctors who are mired and stuck in their narrow category. I had to creatively educate doctors along the way, which AI is also very good about helping with. I am far from out of the woods yet but will continue to pursue every non-surgical option, as multiple surgeries have led me to where I am now. Take the bull by the horns. I wish you well.