To the Newly Diagnosed With Osteonecrosis

I have a rare, degenerative bone disease called osteonecrosis, or avascular necrosis (AVN). It is a painful, debilitating disease without a cure. Many doctors don’t know how to treat it. AVN essentially cuts off the blood supply to the affected bone and the bone begins to die, becoming necrotic.

“Osteo” means bone and “necrosis” means death. It is most often found in the hips, knees, shoulders, and ankles and sometimes spine. You may have osteonecrosis in one or more bones. It can strike at any age, any gender. In people with healthy bones, new bone is always replacing old bone. This process keeps bones strong and also happens when children grow or if a bone is injured. In osteonecrosis, bone breaks down faster than the body’s ability to make strong, new bone. If you do not get treatment, the disease worsens and the bones in the joints break down. You may not be able to bend or move the affected joint very well, and you may have intense pain in the joint.

For the newly diagnosed, here is some information I hope you will find helpful. First of all, you are not alone. We know what it’s like to first hear you have osteonecrosis. I recall I was in shock the day I was told, as I never heard of the disease. I was told it was “bone death” and it seemed like I was frozen in time and disbelief when I heard these words. So what the heck does all that mean? Am I dying?

The answer is no, but one or more of the bones are.

At the time, my orthopedist had told me nothing more and sent me on my merry way. Gee, thanks. I do wish there was more research on this disease, and maybe someday there will be. It’s sad when many doctors get frustrated because they don’t know all that much about the disease either. We definitely need more studies. To try and find answers, I rushed home and sought out my old friend “doctor” Google. I cried, got pissed off and wondered “why me?” Why was this happening to me? I was only 51 at the time, (I’m now 53), so I asked the doctor about the plan of action, in order to try and get on with my job and my life. I was told at 51 I was “too young” for knee replacement, as they only last 10-15 years, so for now I would have to deal with it. I still haven’t had any surgery. I did have steroid injections, which later I was told can make it worse.

The doctors predicted the osteonecrosis came from trauma to my knee when I tore my meniscus exercising. (I always knew exercise was hazardous to your health!) It took me several weeks, if not months to really get over the shock of it all. I have learned now to accept it and just make the best out of it. I do plan on getting PRP injections as my AVN has changed very little in two years, although pain is greater. The MRI and X-rays show a slight change, which is a good thing, but the pain is really exhausting.

Sometimes I see my pain as a sign of weakness or a personal defect I should be able to overcome, but deep down I know I have to be strong, as I deal with this pain every single day. Oftentimes, I try to ignore it and go about my day, but it’s not that easy. Even when I try to push it to the back of my head to focus on cleaning, cooking or work, the pain starts to scream again leaving me frustrated and at times defeated. This is when the issue of self-esteem can come into play, as I just don’t feel like the same kind, loving hard working person I know I am. It’s difficult with osteonecrosis to do what you want with your time, even when you try. Either one knee doesn’t bend, or your hip, so you become frustrated, as simple things like cleaning the bathtub are now challenging.

AVN pain isn’t just constant pain, though that would be more than enough for anyone to handle. The truth is the pain can bring about other health issues, or is caused by an underlying health issue. When you are in pain it can be very hard to think beyond the pain and see the big picture. You may not realize it could be making you tired, sleepless, cranky, and ruining your concentration and self-esteem. Sometimes all of this can cause you to isolate yourself. If you love someone who is struggling with this rare disease, learn about the disease so you can recognize the symptoms easier. Try to show a little extra compassion, as you now know why they are feeling that way. After all, it could happen to you.

Although I hate this being in limbo feeling, I am carrying on as best as I can and you can as well. My advice is to seek out doctors knowledgeable about AVN, check for underlying causes and eat a good, clean diet. Try to find ways to help ease your pain. Don’t stop living, but be more cautious and try not to over do it. You will have great days and days that may suck. You have to be able to forgive yourself on those days you aren’t able to do anything. Never allow your condition to get you so “down in the dumps,” you have a hard time crawling out.

And lastly, it’s great to have a support group. It’s crucial. I have been fortunate to have family, friends and a whole community of others in similar circumstances. I started a support group and people from several countries with this disease have joined. While people in your family and friends might not be able to fully understand the disease, we do. We have it and you are never alone.

To stay strong, something I always reference back to is this saying:

Fate whispers to the warrior, “you cannot withstand the storm.”
And the warrior whispers back,
“I am the storm.”