Pvns Right Shoulder

Hi everyone,

I am 27 y/o, female, Filipino-American, diagnosed with PVNS last Monday, November 26, 2012.

My PVNS is of the right shoulder and is considered diffuse and benign at this time. It was diagnosed via ultrasound guided biopsy. A large bump in my shoulder was first noticed by a massage therapist in October, no pain but I had recurrent right-sided migraines since a car accident in 2009 and old pictures show a smaller bump on my right shoulder. It obviously grew bigger.

Surgery will occur soon, but it is pending on my decision to join a clinical trial for PVNS on the efficacy of the drug MCS110 by Novartis. Have any of you heard or are enrolled in it? It is being conducted in only 6 centers in the U.S. and only 12 patients with PVNS are expected to participate.

http://clinicaltrials.gov/show/NCT01643850

I want to know from you guys what your experience with surgery has been like, if you had any recurrence and within what time frame, and how fast your PVNS supposedly eroded your bone (mine is eating away at my humerus).

Also, do any of you have malignant PVNS? And where did it spread to?

Please let me know ASAP! Thank you.

Jackie
jacsd jacsd
26-30, F
Dec 6, 2012