{Correction 02/13/2013): 6 mo f/u MRI 06/2012 showed a false pvns recurrence. It was proven during f/u surgery 12/14/2012that the mri was showing scar tissue and not pvns. After you have surgery the mris become more difficult to read accurately. After the 6 mo f/u mri I had two more mris done showing that the (false) pvns was remaining stable (unchanged) that was the clue that it was scar tissue and not pvns.} The tests that I referred to in this article all came back good. I do not have an over or under active immune system nor anything besides osteoarthritis from age and pvns.
Being a Pioneer
I am well aware that we are all guinea pigs and it doesn’t matter what treatment we choose. On a positive note the more data that is collected increases the chances that a common link could be found. I commend everyone who is willing to try adjuvant treatments because you are the pioneers that may someday make a cure possible. Note please make sure your physicians are sharing your information (positive and negative) with researchers and not just keeping it in their private files.
MRI Report of a False PVNS Recurrence
Being a Pioneer
I am well aware that we are all guinea pigs and it doesn’t matter what treatment we choose. On a positive note the more data that is collected increases the chances that a common link could be found. I commend everyone who is willing to try adjuvant treatments because you are the pioneers that may someday make a cure possible. Note please make sure your physicians are sharing your information (positive and negative) with researchers and not just keeping it in their private files.
MRI Report of a False PVNS Recurrence
Why did my treatment regimen fail when others (approx. 80%) with the same amount of PVNS, damage and treatment remain in remission? During surgery the joint was visualized arthroscopically then an open complete synovectomy was done. My orthopedic oncologist is a top rated surgeon familiar with pvns. She removed all visible signs and areas that showed on the mri. I followed up with 18 treatments of 200 greys each which would have disabled . My six month follow up mri showed a new area of recurrence. Something is making my body more susceptible to the pvns and until that is corrected I’m afraid it will continue to recur, destroy my joint as it has caused the chondromalacia to worsen in just one year even with surgery.
The cellular composition of diffuse pvns is exactly the same in each individual so this means that pvns itself has the same strength and destructive properties in everyone. What makes some bodies more susceptible to a recurrence? I have arthritis in both knees and throughout my spine that is well out of proportion to my age and lifestyle.
I’m working with a research arthritis specialist who is running many tests to see if I have some type of defect that makes me more susceptible to arthritis and or pvns. I am also working with an immunologist who is checking to see if there is a link via the immune system. some of these blood test take a month to get the results so I will post any information that they may provide. For now the doctors are trying to build up my body as much as possible immunologically by addressing my allergies (they have already done allergy testing for which are minimal), with diet (I’m looking into cancer diets), and supplements including Vit D because it was very low and low vitamin has connections to tumor growth. Hopefully along with what they find out from the blood tests I will be in better shape to resist future tumors (recurrence) after my next surgery.
I am not a physician and the above is in no way to be taken as medical advise. This is my interpretation of what I have been told by my physicians and from what I have read. Always consult with a professional for case specific accurate information.
