What is Osteonecrosis?
Osteonecrosis: Osteo - “bone”; Necros – “death” (derived from Latin and Greek)
Osteonecrosis means, literally, bone death. Also called Avascular necrosis, osteonecrosis is on the increase, with more than 20,000 new cases being diagnosed in the US every year. There are 250,000 documented cases of it at present; but the actual figure is probably much higher according to the National Osteonecrosis Foundation, an affiliated organization.
ON/AVN is caused by a blockage or loss of blood flow to a joint or bone, causing the joint/bone to die. Usually, but not always, the hips are first affected, then, other joints may follow. It can strike any bone or joint in the body. The bone tissue/joints actually die, just as heart muscle tissue dies from a heart attack. If the damage is extensive enough, there is the potential for the damage to render the diseased joint ineffective for life unless proper, timely treatment is received.
Who gets Osteonecrosis?
Many victims are multifocal-ON/AVN, meaning more than one bone or joint is affected. Once in a while, people are affected with just a very small 'necrotic spot', as one person wrote and told me; and, as her doctor told her, the possibility does exist for such a small area of AVN to reverse itself. Therefore, our Website/Association is more geared for those whose AVN does not 'just go away,' which appears to be far more often the case.
Although there are other causes, a great many cases today are induced by a very powerful and commonly prescribed family of medications, the cortico-steroid group. Not everyone who takes these medications gets ON/AVN; science and research have yet to tell us why. Many new victims today fall into the late teens to early 30’s age group, as they survive once-deadly diseases such as cancer or leukemia, with the application of the newest and very powerful chemotherapy drugs. For many, their AVN is caused in part by some of these potent medications.
What are the symptoms of Osteonecrosis?
It is second only in pain to bone cancer, the death of the bones/joints is the same.Treatments for it are mostly surgically interventive, with no way to predict or guarantee outcomes or results.ON/AVN does not respect age, gender, or ethnic background; it can strike anyone at any time.Of the 20,000 joint replacements in the USA every year, at least 20 percent of them are due to ON/AVN.ON/AVN is still considered a rare condition with not all orthopedic doctors being equally experienced in diagnosing and/or treating it. Valuable time is lost in treating the patient,sometimes leading to a collapsed or otherwise destroyed joint.Very little research is on-going for ON/AVN, as expected with any ‘orphan disease’, or a disease that has a growing number of patients but has not yet reached the numbers of more wide-spread conditions, such as heart disease or cancer.There is no known cure for ON/AVN. We desperately need to turn this around.
ON/AVN is very painful for most patients, and can quickly lead to loss of mobility and/or use of the affected limb. It is not easy to wait for a treatment or procedure that will be of some real help when one is suffering a great deal of pain. For far too many, there are traumatic personal losses such as jobs, over-all family income, and sometimes, unfortunately, close relationships.
How is Osteonecrosis diagnosed?
Imagine trying to arise from a chair one day and being unable to stand up. Or, imagine trying to climb a staircase one evening and suddenly collapsing in a world of pain, unable to put any weight at all upon your leg. The pain hits suddenly, like a bolt of white-hot lightning. It is quite shocking in its intensity, and causes you to become instantly immobile. It is very puzzling as well as frightening, because you have no clue why this is happening to you.
You most likely will call your doctor the next day to make an appointment. If you are among the very few fortunate, you may get a correct diagnosis with the first round of tests, beginning usually with a simple x-ray. However, for most of us ON/AVN patients, this most often is not the case. For many of us, ON/AVN usually does not show up in an x-ray until the joint is in a far later stage of the disease. Other, more sophisticated tests are called for, which in these days and times are not so always easy to procure.
Diagnosing ON/AVN can be somewhat complicated. First, depending upon whether or not your treating physician has seen and/or treated it in other patients can make a huge difference in his being able to correctly suspect and then identify the disease. Then, depending upon his most recent knowledge of the latest developments in treating ON/AVN, you may find yourself in a holding pattern for quite some time.
How is Osteonecrosis treated?
As far as treatments for it, there have been some remarkable advances in recent years for the relief of pain and restoration of use for AVN-affected joints without having to undergo total joint replacements. However, because so many variables exist among patients, not all treatments work the same for everyone, nor do they always provide hoped-for results. This disease reacts differently from person to person, with no two cases ever being exactly the same. This is why it is imperative to find an orthopedic doctor or surgeon who is very experienced and knowledgeable in treating ON/AVN. Time is of the essence, and the earlier your ON/AVN is properly diagnosed and treated, the better. There is no way to know how quickly the disease may progress, or even if it will progress at all. There is also no way to know for sure if it will attack more than one joint or bone. Science has yet to unravel these mysteries for us.
What is ON/AVN Support?
Until our support group got its start in 1995, there was not a single patient support system in the entire world for this second most destructive of all bone ailments (with bone cancer being the first). Victims felt isolated and lost in a sea of pain, immobility, confusion, and fear. No one around them had ever heard of ON/AVN before, making them feel even more isolated. I determined that the way out of this maze was through knowledge, and I believe I was right. The more we know about our own cases of ON/AVN, the better choices we can make for medical care and for life plans.
Our original website was designed to be like a beacon, or pathway, to many qualified medical knowledge sites. It remains so today; in addition, we evolved into a huge intra-communication system by AVN patients, for AVN patients the world over. Over the years, I have seen ON/AVN come out of obscurity and into the medical spotlight, where it deserves to be. Today, we are a non-profit organization with a membership that spans the globe. Our website and our conversation gathering-place web site on Yahoo contain many hundreds of links for patients to visit and view, and from which to gather knowledge. Most importantly, we have become a family that helps one another through the pain and the fear. Our wish is to help each other regain our lives as we once knew them.
Looking towards the future...
We are presently on the verge of a truly remarkable event. Knowing that research is critical to solving the mystery and many puzzles of ON/AVN, our organization has been accepted as a co-sponsor with The Hospital for Special Surgery, Manhattan, NY, for a very special research project focusing on this disease. We hope to learn why steroids cause AVN, and we hope to learn how to successfully apply new bone regrowth techniques for ON/AVN patients. We hope to find a cure.
We need to help raise the initial startup costs to get our project underway. From that point forward, HSS and we can go to other agencies and apply for grants and other funding. Our association has already made history by coming together as a non profit organization for victims of ON/AVN. We dared to venture into this uncharted territory and hope to make genuine help into a reality. We are doing it once again, making history, by being the first patient system ever to initiate a research project specifically for our disease.
While many of us have lost the ability to walk, this is one step we can take.