Living With Avascular Necrosis

One of the hardest things I’ve ever been told is that I would be living with avascular necrosis the rest of my life. Worst, that I’d be in a wheel chair. It’s been 19 years since my AVN diagnosis and if I could go back to that day, this is is what I would tell myself.

I was a senior in college going out with friends one night when suddenly, something gave in my leg.

I was lying in the middle of a busy road and couldn’t walk.

A friend pulled me off the road. While someone called 911, he called my parents. He was shaking the whole time, and held me until the ambulance came. I think he was more scared than I was.

My parents arrived the same time the ambulance did and I was rushed to the hospital where they determined my femur broke. I’d been having a strange pain in my leg for weeks and had an x-ray done at urgent care days before the accident but nothing showed.

Months earlier I was parasailing in Spain.

I was told the fracture was severe and required surgery. They didn’t do surgery until the next morning though.

I’ll never understand why surgery was didn’t happen until 8+ hours later. Every minute of blood loss to bone is critical. Ultimately this mistake is what lead to my AVN diagnosis .

Looking back, I know without a doubt my hormone problems manifested in this fracture.

The femur is the largest bone in the body and hardest to break. This should have been a red flag to doctors that something was wrong with my body.

When I woke from surgery, I woke up to my worst nightmare.

I had a huge scar of staples from my hip that extended to my knee. I immediately thought what man is going to want me now? I’m botched. I’m not a woman. For days, I didn’t talk. It was just too horrifying to be real life.

When they made me move, I wanted to die. The pain was unbearable.

I was on crutches 3 months. Couldn’t drive, couldn’t shower, couldn’t walk to class. Did I mention it was my senior year of college in Wisconsin in the middle of winter? Thankfully I had amazing roommates, friends and parents who helped. Without their help, I wouldn’t have graduated that year.

My scar today.

Once I was released from crutches, I had to learn how to walk again.I lost all muscle in my right leg and was extremely weak.

The orthopedic never suggested physical therapy.

I will never understand that given the severity of my injury. But I was a fitness instructor and worked out frequently before the accident so I started going to the gym and gradually regained strength.

A year later, the pins removed.

It was the greatest relief. Those pins hurt with every step I took. I swore they were near a nerve because that pain was intense and never went away until they were removed. Six months after the pins were removed, I couldn’t abduct my right leg. It was locked.

I was 22 when I was diagnosed with avascular necrosis.

The prognosis wasn’t good. My right femur head had died from lack of blood supply and would only continue to deteriorate. I was referred to Mayo Clinic. When I got there, I was optimistic they would do something, but left with the most horrific thing a doctor has ever told me.

I was told by two doctors in not so sensitive terms, I needed a hip replacement in 6 months and needed to prepare myself for a life in a wheel chair. What’s worse, I was told NOT TO BE ACTIVE.

The doctors insisted I stay off my feet to protect what little bone I had left.

I was devastated.

For 10 years, I did what they said. I did nothing. I sat around, placed limits on what I could or could not do, passed experiences and missed living the best years of my life. They’re doctors. They know everything. Or at least that’s what I thought.

Until one day, I had enough and started walking.

If there were ever a moment in my life I could point to as my turning point, it was the day I started walking. I no longer told myself I couldn’t anymore. From that moment on, I told myself “I can.”

I can lose weight. I can be active. I can live life. It was the best healing I ever did for my body.

My AVN pain literally disappeared as the weight did. Today I’m in 90% less pain than I ever was overweight. My high level of activity also keeps the joint mobile which equates to less pain.

Today I wish I could go back to those doctors, shake my fists at them and tell them how wrong they were, how ashamed they should be for giving so little hope to someone.

A positive approach is more advantageous to a patient than a negative one.

Over the years, I’ve interviewed several doctors for my hip surgery knowing it was something I would be faced with eventually. Every doctor I’ve seen has been amazed how I’ve gone 18 years without surgery, stating scientifically it’s impossible. My response?

“It’s not impossible, it’s because I’m active.”

I knew I found the right doctor when I found one who agreed with me. He said he wished every patient understood the value of activity to pain management. Unfortunately, not every patient has my outlook because not every patient is willing to fight for their health the way I did. Many people accept what the unhopeful doctor says.

You never wake up one day expecting your life to be turned upside down by illness.

It just happens. And you do the best you can to deal with it in the best way you can, which may not always be what a doctor tells you. I’m not saying doctors are wrong, but I am saying you can do anything you set your mind to. If I had to go back, I would tell myself to…

Have faith. Never to lose hope. It will be hard, but your mind will take you where you want to go and your body will follow.

I have several tips for dealing with avascular necrosis and the type of workouts that helped me. As for diet, I focused on losing weight by watching my calories, portion sizes and eating more nutrient dense foods. There is no cure for AVN, but certainly losing weight made the pain more tolerable.

In September 2016, I had a hip replacement effectively removing my AVN. You can read about my hip replacement in these posts:

Too Young For A Hip Replacement

What To Expect Recovering From A Hip Replacement

Disclaimer – the advice in this post is general advice. It’s not intended to treat or diagnose. As a health care professional, I cannot give individual medical advice unless you are a patient of mine. This is for legal reasons and to protect your health. I am NOT an orthopedic doctor. DO NOT send me your x-rays or medical information. Please consult with your orthopedic.

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