Name : Anthony Schafnitz
E-mail : amsjr1622@gci.net
Adult: 38 years old
Location: Alaska (originally from Eastpointe, MI)
Areas affected: Right Scapula, (L) 5th & 6th Ribs and (R) 3rd & 4th
Personal History:
I was diagnosed with Melorheostosis about 14 years ago. I was diagnosed because of a freak accident playing basketball. My shoulder blade had broken at which time the x-ray had shown a lesion in the shoulder blade.
I am in the United States Air Force and was sent to Bethesda Maryland for an evaluation with Dr. Gitellis, Professor of Orthopedics at St. Louis Presbyterian Medical Center in Chicago, who was a Reservist called to Active Duty back in 1991. He performed surgery which came back with the diagnosis of Melorheostosis. Since 1994 I have been followed by Air Force Physicians with multiple visits/surgeries (9) to San Antonio, Texas to Wilford Hall Medical Center to see an Orthopedic Oncologist, Dr. Theodore Parson.
While Dr. Parson has been extremely helpful and looked out for my best interests over the years this condition/tumor has now spread into my ribs (L) 5th-6th and ( R ) 3rd and 4th and the pain is getting worse and I feel he is limited as far as knowledge goes since I am the only patient he has seen with this problem. I have tried simple anti-inflammatory medications but nothing for pain management. I would like to get some feed back if possible regarding this condition to include any medication if at all to stop the spreading or relative pain medications that have helped others.
I have averaged about 1-2 hours of sleep (consecutive hours) a night for the last 12 years. This tends to get old after a while. Thanks!