This will be a continuation of the blog I have written, which can be found at http://bmeyersjr.blogspot.com/ for all previous entries.
I have not have surgery on my right knee for this disease since September 2014, now I am at a yearly visit to make sure that the Synovial Chondromatosis disease has not spread / gotten worse and has not turned cancerous. Each time I go, I get a CT scan done. I go to a Doctor that is in the Orthopaedic Surgery department at UPMC Shadyside in Pittsburgh, PA.
Had the CT scan done, and long story short, the disease has not grown since last year and is still a benign tumor. I still have pieces of it floating around in my leg, in front, on the sides, and behind my knee. The one on the left side of my leg I can move around. I thought that it was just a piece of scar tissue floating around, but apparently it is the disease moving around that sometimes gets stuck under my tendons. When it gets stuck, it is very painful and it is sometimes even more painful to move it to a different location, but that is the only way to stop the pain.
My doctor did say that I could have surgery on it to remove those pieces, it would be a day in and out surgery, not like the past 3 I had where I stayed in the hospital for about 4-5 days each.
Going to this doctor is well worth the 3.5 hour drive as he knows what it is, and most other doctors I have to explain to them what this disease really is.
Below is the test results that are from my CT scan on 7/29/2017:
Narrative
EXAM(S): CT LOWER EXTREMITY WITHOUT CONTRAST RIGHT CLINICAL HISTORY: Age: 28 years . Gender: Male. Stated history: ” Neoplasm of uncertain behavior, unspecified” Additional history: None. TECHNIQUE: Multiple contiguous transhelical images were obtained. Data was reformatted in sagittal and coronal plane. COMPARISON: CT right lower extremity dated 06/15/2016 FINDINGS: Bones: There are multiple partially mineralized intra-articular bodies within the knee joint, including the suprapatellar recess, medial and lateral gutters intercondylar notch, and posterior recesses. There also intra-articular bodies within a moderate size popliteal cyst and there is a moderate size joint effusion. Mineralized bodies are most extensive in the posterior and posterior lateral aspects of the joint. Although the number of intra-articular bodies is difficult to compare to the prior since several of these bodies have moved; however many several of these bodies have matured and demonstrate progressive mineralization compared to the prior examination. There is a chronic appearing erosion of the posterior lateral tibial plateau. There are patchy areas of demineralization within the distal femur, similar to prior, likely related to osteopenia. There is moderate medial and lateral compartment osteoarthritis. There are tricompartmental marginal osteophytes. Soft tissues: The quadriceps and patellar tendons are grossly intact. The menisci and cruciate and collateral ligaments are suboptimally evaluated with CT.
Impression
NUMEROUS SMALL OSTEOCHONDRAL BODIES SCATTERED THROUGHOUT THE KNEE, MOST PRONOUNCED IN THE POSTEROLATERAL PORTION OF THE KNEE, IN KEEPING WITH HISTORY OF SYNOVIAL CHONDROMATOSIS. SINCE MANY OF THESE BODIES HAVE MIGRATED SINCE THE PRIOR EXAMINATION IT IS DIFFICULT TO DIRECTLY COMPARE THE 2 EXAMS; HOWEVER MANY OF THESE BODIES HAVE DEMONSTRATED MATURATION AND PROGRESSIVE MINERALIZATION COMPARED TO THE PRIOR STUDY. THE OVERALL DISEASE BURDEN APPEARS SIMILAR TO THE PRIOR EXAMINATION.
Also, I just wanted to share some links to some groups and websites that you can join if you have this disease:
Facebook Group
Map of Locations of Members as well as hospitals that have treated this disease
Reddit – Not that popular to be used as of today, but I post up news about the disease