Welcome to the world’s premiere non-profit organization for sufferers of Osteonecrosis- Avascular necrosis!

If you are reading this, chances are great that you have more than a passing interest in Osteonecrosis-Avascular necrosis. You may be one of the 20,000 people who are newly diagnosed with it every year in the US alone; or you may be from another country, as this disease strikes people from all over the world. For the sake of saving time and energy, we will shorten that long, two-part name to simply “AVN”, which is really the older term for this particular ailment. However, no matter if you call it Osteonecrosis or Avascular necrosis, or just AVN, it all means the same thing: death of our precious joints and bones.

We hope that if you or a loved one does have AVN that you join our organization in our quest and efforts to help everyone affected by it to learn how to live and cope with it. By coming together, we also hope to make the world aware of this destructive illness so that earlier detection is possible. Early detection of AVN means, essentially, that interventive treatments which exist today may stand a better chance for success.

Another important goal of our organization is to help fund a special research project with Hospital for Special Surgery, NY, NY, which we hope will give us some answers as to the causes of this illness, and hopefully, lead to procedures that will encourage new bone growth.

So, welcome to our new home! For many years we existed both on the Web through our own website, and on Yahoo as a private group. We are very pleased to be able to bring you a brand new web site that is fully integrated with many wonderful features that will help you to cope with your AVN, as well as to help us achieve our goals. Above all, you have found an entire family of fellow AVN sufferers who know what you are going through. Through our interactive message forums, chat rooms, and informational libraries we are here to help one another deal with this painful and debilitating disease. Ours is the first, and so far only, non-profit support system in the world “for AVN patients, by AVN patients”, and with open arms, we welcome you!

"A support system for AVN patients, by AVN patients...getting better, one step at a time."

This is our very own logo ribbon, designed for us by one of our members. We hold her very dear to our hearts for doing this for us.

Having gotten our start fully 14 years ago, we slowly grew from a handful of people on AOL’s Better Health Network- Community to a massive all-volunteer organization that spans the globe, with over 2,000 members. In fact, we were the very first patient support system for AVN in the entire world -- and we are still going strong! For the past 10 years, we made Yahoo our ‘base of operations’ because it is a free service, and it served our needs very well. We will always be grateful to Yahoo and thank them so very much. But, we have far outgrown Yahoo’s capabilities and found it time to move on, out on our own.

In 2005 we became an official non-profit support organization, the very first of its type in the world, “For AVN patients, by AVN patients.” Along the way on our 14 year journey, we have ‘met’ via the Internet thousands upon thousands of people all suffering from AVN. Our name pops up on so many other fine web sites that we’ve lost count! As the leader in the field of support for victims of AVN, we move forward with our new web site in the hope of continuing to reach even more AVN patients. An affiliated organization, the National Osteonecrosis Foundation, lists us on their site as the support system to turn to if you are a person with AVN. We were featured in an article in The NY Times on a certain famous bicyclist who also has AVN. We also hope to partner with The Hospital for Special Surgery in a very special research project for AVN, one of our major goals. What is note-worthy is that all of us in the organization, from the leaders on down, suffer from AVN; yet, we as an organization have managed to make our voices heard, and we continue to do so.

With our vast library of past messages to search through -- nearly 50,000 in all -- you will be able to see how we grew as an organization and how important our support was and still is to so many people.Using our huge library of links to other sites, and documents we’ve created on our own, as well as our databases for so many areas -- all of these tools now at your fingertips-- you will definitely feel you are in ‘the right place’ for knowledge and moral support.

Our own private chat room area is unequalled for any support system for AVN on the Web. We even have separate areas for caregivers and for parents of kids with AVN. We will also feature link-ups to videos on many topics and procedures. Whatever your concerns are regarding AVN, you will find something here to help you in your search.

Yes, it took a long time to get to this point. But, with a very dedicated team of volunteers and a lot of hard work, this has now become a reality. With great pride and hope for a better future, we now bring you our new site. All you need to do to get to know us, and let us get to know you, is to join us today!

If you are like most people, you probably never heard the term “Osteonecrosis” (or Avascular necrosis) before.

However, you might now have a doctor who is telling you that your hip, or knee, or shoulder or other joint is dying. Your mind is probably spinning! You struggle to comprehend the doctor’s words. You probably feel very upset, and rightly so, at the mention of something that sounds so strange and so unexpected. Yet, the fact remains that you sensed that ‘something’ was wrong going on deep within your body because the pain you have been experiencing is like nothing you’ve ever felt before. You may notice that walking and standing for any length of time is becoming affected. If it’s your shoulder that hurts, you might not be able to use your arms as you always used them before. You may have eventually realized that over- the- counter medicines are not helping you with the pain. As pain persists, you notice your physical limitations are increasing. You most likely sense that something is wrong, but you have no clue what that may be. Eventually the day arrived when you visited your doctor, and you may find that he told you, “You have AVN.” So, now you have a diagnosis -- but -- if you are like most people, the first question that comes to mind is this: What is AVN, anyway?

The short version is simply this: something has happened to cause blood flow to your joint (or bone) to become compromised. Due to lack of blood supply, the bone begins to die. The problem is that with AVN pain is usually not felt in the very earliest stages of the disease; that comes later on. For this reason alone, many people often go undiagnosed or even misdiagnosed for quite some time, and by the time pain presents itself, the disease has become well established. Treatment for it becomes far more difficult.

So, what do you do now? You join us to learn all that you can about this mystifying and destructive ailment. You need to know all that you can about AVN so that you can make better choices for your medical care. Our vast informational libraries, our message forums, and our chat rooms can help you to learn what you need to know. In our organization, we have a saying that “Knowledge is power.” No where is this more true than when dealing with a rare and debilitating illness such as ours. And, the sooner you educate yourself about AVN, the better for you and your loved ones because AVN affects everyone in the family in some way. If you have AVN, you have come to the right place!

This knee (above) was so ruined by AVN that a special prosthesis with longer stems was needed for the patient's total knee replacement.

What about treatment options?

Very encouragingly today there are some procedures that did not exist as little as 10 or 15 years ago. However, as with all things related to AVN, none of them are'easy' and as with any medical procedure there are no guarantees handed out. Some tend to work better than others, depending upon many factors:

1. The stage at which the procedure is done (early stages typically brings best results)

2. The amount of area affected

3. The location of the affected area

4. The patient’s underlying diseases or conditions, if any are present

5. The patient’s own body’s ability to heal and/or their over-all state of health

6. For some treatments, age can be a factor.

7. The initial cause of AVN for the patient (i.e., trauma induced vs. non-trauma induced AVN)

Almost all of the procedures require some type of surgery. The one exception is a new stem cell implant technique which truly is not a surgical procedure per se; but, it is still an invasive treatment. Of all of them, it is the least invasive and seems to be having some remarkable results. Again, whether or not a patient qualifies for this procedure depends on several factors because not all patients qualify for all treatments.

To learn more about things such as other surgical techniques, such as Core decompressions, FVFG (Free Vascularized Fibular Grafts), and hip resurfacing, join our organization. Our informational libraries are full of links to qualified medical web sites that go into these procedures in much greater detail; and, you can talk with or interact with many members who have had these techniques done.

What is meant by 'the stages of AVN'?

As with most other ailments, there are certain ‘ear mark’ stages with AVN. As the disease advances, certain changes occur to the joint or bone which tell the surgeon just how bad the joint has become. However, AVN is very difficult to diagnose and to track. For most sufferers, it usually does not show up in an x-ray in the very earliest stage. That is because the damage is going on deep within the bone and the x-ray can only tell us two things: the bone’s physical appearance (i.e., contour, shape, conformation, joint space), and the reaction of living bone cells to dying bone cells if the damage is severe enough.

Over a period of time, if the patient persists with his complaints of pain and limitations, the surgeon will most likely order either a bone scan (a nuclear medicine test), a CT scan, or the MRI test. Of these tests, most of us in our Association have had the most success with the MRI, asitmost clearly shows cellular changes and what those changes most likely are. It is also the most expensive of these tests, so double-check with your medical insurance plan to find out how much of it your plan will cover andhow much you will have to pay out-of-pocket. The MRI can tell if there is edema (swelling due to fluid accumulation) within the bone, and the reaction of living bone cells to the dying cells. It can show very clearly how extensive the ‘hollowed out’ portions of the dead areas are within the bone, and if the joint is in or close to a stage of collapse.

Depending on the scale your treating physician uses, there are two different methods of staging AVN, but both really mean the same thing. One is just more defined than the other (the Ficat scale for a long time was the industry standard, named for Dr Paul Ficat, a pioneer in AVN research and detection). Both scales arrive at the same conclusion: if the damage is severe enough, the joint collapses in on itself and surgical intervention is called for, most usually a total joint replacement. To learn more about the stages of AVN, join us and learn all about it in our library.

This is an MRI image of a knee in very late stage AVN.
It belonged to the Association's founder and was eventually replaced.

Coping with AVN pain -

Many people who suffer with AVN will tell you that their pain is like no other pain they have ever experienced. The unsettling part is that pain tends to come and go. There is a scientific reason for this and it has to do with inner bone swelling that occurs and then dissipates. In our organization, we teach people about the pain from AVN and why it happens -- and just as importantly, what it means when the pain suddenly subsides.

Unfortunately, a lot of us have found that because AVN is a rare disease there are many physicians who do not understand or know how severe AVN pain can be, or what causes it to be so painful. This is really too bad for the unfortunate patient who happens to have a doctor that is not very familiar with AVN. Oncologists who are familiar with both bone cancer and AVN have said that the pain for the two diseases appears to be very similar, if not sometimes the same. The difference is that AVN is not a cancer, and therefore, is not fatal. However, the dying action of the bone is very much the same: intra-osseous pressure builds up and becomes trapped in the enclosed environment of the bone, and this can cause excruciating pain. With AVN, the swelling can go down as the body reabsorbs the edema; but, it can just as quickly start up again. There is often a misunderstanding between patient and doctor, if the doctor is not very experienced in treating people with AVN.

Especially for our younger members, AVN is an extreme trial. Deemed to be too young for joint replacements by many surgeons, there are some younger AVN patients who really have no other choice, should their joint(s) totally collapse. How can one be expected to live for the next 20 or more years with a collapsed hip, or knee, or other joint? For them, their lives can become suspended in a world of pain and great physical challenge. Additionally, far too many doctors are not aware of some of the interventive procedures, such as the hip resurfacing, or stem cell implants, or the FVFG, that can possibly help these younger patients if they qualify for them, thereby hopefully forestalling a replacement for many years.

In our organization, we share techniques and knowledge for coping with the pain and ensuing limitations that failing joints bring about. When no one else around you understands what you are going through, you can rest assured that we do. To learn more about dealing with pain and physical limitations, and perhaps to find a doctor or surgeon in your area who can be of real help to you, please join us. We may not have all the answers, but our combined acquired knowledge and mutual emotional support can be of help to you in your journey with AVN.

Membership


In order for us to continue being a beacon of light and hope for sufferers of AVN, we need to ask our members to please contribute $20 per year as a subscriprtion offering. Compared to many other organizations' membership fees we feel it is a very modest amount. We tried to keep it as low as possible because we know what AVN can do to a family's financial health. Our subscription rate amounts to less than 5 cents a day, but those pennies make the difference between us being able to be here for you, or not.

If you cannot afford to pay, please contact us. We will work something out with you if you'll let us know that right now is not a good time for you financially, Remember, this Association is for AVN patients, by AVN patients, so we know how AVN can have such a devastating effect on finances.  

To contact us, please email us at:  This e-mail address is being protected from spambots. You need JavaScript enabled to view it

How to join us:

Fill our registration form and submit. You will get an email from us to confirm your application for membership. When you come back to our site to log in, you will be directed to the payment option screen. Please choose either PayPal (to pay by credit card), or make your check or money order  out to The ON/AVN SGIA, Inc. Our mailing address is on that page. We ask you to please make sure you read our Disclaimer, which can be accessed by the clicking on its tab at the top of this page.

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