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.
Osteonecrosis (Avascular Necrosis) 
Thanks for this post. That gave me the motivation I needed to contact Dr. Glueck! Keep up the great work (and posts!) You are helping!
Cassie, “,,,you must continue to search for answers…” For me, there has come a point in time where there are sooo many potential causes and even though I’m young, only 60, I don’t want to spend the remaining years that I have chasing cures that may or may not work.
Does that mean that I’m resigned to ‘live out my days?’ and am resigned to my destiny? Heck no. Au contraire, I’ve become realistic that this is the hand I was dealt, I’ve tried my share of cures and potential causes are so muti-faceted. I’ve spoken frankly about this with my docs and at one point in time, I stopped one step short of approaching my hematologist about the blood work that Dr. Glueck would do as we’ve been in touch.
My heme was ‘on-board’ with Dr. Glueck, but we also discussed that if my ON were the result of a clotting disorder I’d likely benefit. But, given the fact that I have lupus, and the lupus isn’t going anywhere soon (at the very least it will morph into another connective tissue disease) and lupus could also have been a cause as well as other conditions, we all decided to hold off.
Do I like that plate? No way, but it was the hand I was dealt and so I work WITH it. Runnng and rock climbing aren’t in my future, in fact I’ve become more reclusive than I used to be, but that is not because of the ON. This Shrinking Lung Syndrome from lupus has really thrown me a curve ball.
I think it may seem like I’m rambling, seeking for someone’s approval, Even though I don’t pursue the ‘clotting disorder’ avenue, it is not without serious thought. My time is so precious, money tight to be flying all over kingdom come (now that sounds like rationalizing my health). No way. I’m at peace, or as much peace as can come when you have a chronic illness that won’t budge. If there’s anyone out there with suggestions, who thinks that I AM giving up and giving in, I’d like to hear objective opinions. I just don’t feel that I am. My plate is only so big. Annie
Annie you don’t sound like you are giving up. You have a lot of medical issues on your plate. You’ve started a blog and are active in the community. You should be proud of yourself!
Reblogged this on LUPUS CHRONICLES.
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