Avascular Necrosis: My story of a rare condition
HARTFORD – In 2008, I was diagnosed with Avascular Necrosis. I was lucky, I caught it early and was able to find an effective treatment.
AVN is a condition that affects an estimated 10,000 to 20,000 new people each year, worldwide.
It appears in the ends of the “long” bones of the body, bones such as the femur and humerus. As a result, AVN can be diagnosed in the shoulders, knees, certain bones of the ankle, as well as in its most common location, the hips.
In short, AVN is a condition which appears because the affected bone suffers from blood loss. Healthy bones are constantly being broken down and built back up, but the part of an AVN-affected bone that is being starved of blood begins to die faster than the body can repair it. This death happens on the inside of the bone, which over time weakens and causes the outside of the bone to collapse.
AVN is a mysterious condition which has a different timeline and severity in each affected person. In some people, the deterioration stops on its own, but in the vast majority of cases (especially in AVN of the hips, which I have) the condition progresses to collapse. The timeline from diagnosis to collapse can be as long as several years, or as quickly as several months.
Once a significant portion of a bone starts to collapse, there isn’t much chance that any treatment will save it. At that point, some form of joint replacement becomes the best option.
Normally, this is the end of the AVN in that particular joint, and given the relatively high safety and efficacy of hip replacements, those suffering from AVN of the hip(s) can go on to lead a relatively normal life.
The problem with this scenario is that AVN, especially AVN of the hip(s) tends to affect a younger population than other conditions (like osteoarthritis) which would also require joint replacement. Coupled with the fact that hip replacements currently have a limited lifespan, and each subsequent replacement on the same joint becomes trickier, costlier and less likely to work, using joint replacement as an early means of treatment is, essentially, a gamble.
Because of these complications, the affected person has to slowly, and very painfully, endure the joint collapse and withstand the pain and loss of mobility as long as possible before undergoing the first joint replacement. This is no way to live. Some unfortunate people have developed this condition in their shoulders, hips and knees all at the same time, and from hearing their testimonies on-line, it sounds as if their lives have been irrevocably altered by this condition. It is a lifestyle some have said they wouldn’t wish on their worst enemy.
I was lucky enough to only have AVN in my hips, and to have it discovered unusually early, before the joints collapsed. As a result, the adult stem cell transplant I underwent seems to have halted, or slowed, the disease, which hopefully will delay my hip replacement as long as possibly, if not forever.
Avascular Necrosis (AVN), is also known as Osteonecrosis (ON).
There are also some excellent support groups on-line at http://www.yahoo.com , including the AVN Support Group International. This group is about more than lifting up each others spirits, it’s also a hotbed of news and information about the latest treatment possibilities world-wide – treatment options your local physician or orthopedist may not know about. Such information is critical when you have a disease or condition that has not standard, consensus course of treatment.
My stem cell transplant was performed by of the Dr. Thomas Einhorn at the Boston Medical Center.
If any of you have other questions about AVN or the stem cell procedure I underwent, you can also contact me at firstname.lastname@example.org.
You can read more about the breakthrough surgery here.