A lot of Osteonecrosis (Avascular Necrosis) patients are told their ON (AVN) is idiopathic. Meaning doctors can’t find a reason as to why that person developed ON (AVN).
There is a reason for everything, it might not be known at that moment in time, but nothing happens without a cause.
After going to several doctors, as we all have, I was told by one after another that they couldn’t tell me why I developed ON (AVN). I didn’t believe it when doctors told me my disease was idiopathic. When I was told there was no treatment for me I knew the key to getting help was to figure out why I got the disease in the first place. I set out to put together the pieces of the puzzle. I was determined and convinced that there was a reason.
After several months of doing research and calling doctors one vascular surgeon mentioned a medical journal article he had read by a Dr. Charles Glueck, the surgeon didn’t have a copy of the article so I searched for Dr. Glueck’s contact information on the web. I found his email address, sent him a message and he replied 20 minutes later. His first request was for me was to get tested for a number of blood disorders. I went the next week to Quest Diagnostics and had my blood taken. After the test results came back it was confirmed that I had three clotting disorders.
Dr. Glueck sent me several of his papers all concerning patients who had clotting disorders and ON (AVN). I hadn’t found or heard of this research anywhere. NO ONE had told me that clotting disorders could have caused this disease. NO ONE had written about the fact that, if you take steroids and have an underlining clotting disorder, ON (AVN) will be more aggressive in your body.
Finding Dr. Glueck’s research was the most important piece of the puzzle and now being under his care I am taking heparin therapy for my Factor V Leiden, I take supplements to lower my homocysteine levels and I take a chemical food supplement to help with my eNOS mutation.
When a doctor tells you that there is no reason for your ON (AVN), you must continue to search for answers. Continue to do research on the web. Continue to get second, third, fourth opinions. Go with your gut. DON’T STOP ASKING questions. Be annoying!
There aren’t enough people in the world who have ON (AVN) for the medical field to put substantial funding into research of the condition, therefore, as a community we have to share the knowledge we have. I met with a hematologist and I was explaining to her what the eNOS mutation means. This isn’t the way it should be, but it is and we have to keep fighting for answers.