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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I'm a 50 year old women with a 17 year old and a 9 year old still at home. I was diagnosed with AVS 4 years ago and was told I needed to lose 130lbs before they could give me a replacement. Easier said than done. I can hardly walk and have a hard time dieting because im so depressed. I'm so focused on how active i use to be that ive got myself in a dark place. I feel trapped in my own body. Ive tried the calorie counting and started to do good but for some reason i just cant stick with it. I have no support system at home. My husband calls me a fat whale or fat ass. I need help and dont know what to do. I wish there was somewhere i could go that would not only help me mentally but teach me how to eat and cook smart and lose weight so i can have my surgery. I want my life back.
If you're too depressed to work on small habits like adding healthier foods to your diet rather than dieting, then seeing a licensed therapist BEFORE losing weight is what I recommend. You will never make habit changes for life feeling bad about yourself. Change and motivation comes from being compassionate and appreciative of one's self. I talk about this so much on my podcast. I can teach you how to eat but you won't do it when you're having a bad day, your husband says something snarky at you etc. Chances are if hubby makes you mad today, he will still make you mad even after you've lost weight. Learning how to react differently to those situations is part of the journey.
The advice your doctors gave you, to take it easy, wasnt necessarily bad direction. It gave you ten+ years before the inevitable hip replacement from the sounds of it, which is pretty darn good for AVN. You clearly took their advice to not overdo it. I wouldn't necessarily feel bad about that. The hip replacement sounds like it's worked, which is great. Hip replacements usually work, but sometimes they don't (some get infected...), and in most cases they need revision in 10-20 years. You can only do so many revisions. Hopefully you get 30 out of this one and another 30 out of the next one but by then there's a good chance, at the age of 90, if you're very lucky, a third revision won't be possible. And what if you only got 10, or fewer, years out of it? A doctor gives the best advice s/he knows, considering the big picture, and it's only as good as the relationship you've built with him/her.
That said, you had a hard go of it and maybe a hip replacement would have been better done sooner.
As for the delay in your surgery -- so many possible reasons for this, and not necessarily (or even likely) negligence. Too bad though as yes, every minute counts. By the looks of your injury you may have had severe tissue damage as well, which would have made for an even more serious situation.
Best wishes in your future with your hip!
I was diagnosed with a AVN this past March. I had just gotten into kayaking but had injured my shoulder in December during a workout. I cried when I thought of losing kayaking. Now my hips hurt and they said to expect the hips next. I’m naturally active. I love hiking and climbing and aerial obstacle courses but I feel like I’m losing this fight. I hurt all over most of the time. I wanna stay active and fight back. Any help would be appreciated. I’m 39. I weigh 140 and I’m 5’6. So slightly over weight.
Hi Megan I just wanted to ask you is there any other alternative than hip replacement as like by adopting healthy lifestyle and by nutrition please reply.
Hi! I actually have these tips in this blog post that is linked at the end of this article that you may find helpful. https://skinnyfitalicious.com/dealing-with-avascular-necrosis/
Hi! I had very advanced stage cancer a few years ago, which didn’t cooperate fully with the chamo, and therefore had very strong chemo and steroid treatment to clear the cancer. The amount I was given was really night and considered an overdose for the age I was. I was 13! Once I finally finished, I thought I was gonna be ok, but then I started limping badly and after a few months i went to an orthopaedic surgeon and i found out that the dose of chemo had cause lack of blood and oxygen to my left hip and was diagnosed with stage 4 AVN. I was told to use crutches and only use my right leg as they wanted the least pressure on my left hip. Little did I know that my right hip was in danger too and after a while I was in a wheelchair with bilateral AVN. The surgeon keeps on pushing surgery off and I thought I was a fighter when I managed to walk for a while, I do physical therapy every day and it’s great. The problem is that whenever I do anything BUT walking I fall back and am in extreme pain. I’m now under no surgeon as I just turned 17. I have to start with new surgeons now and new ideas. For now I know I’m not having bilateral hip replacements and I’m fine with that. I want to know how you managed to do everything without being in agony as my joints are also all worn out and I keep falling back with doing daily activities. Is there any advice you can give me?
Wow this is amazing and so similar to my story, I had lost all hope and one day I just couldn’t take it anymore and started to walk and then started doing some under water exercises and it’s been over 8 years now and I still haven’t got my surgery and I have carried a backpack across 12 countries as well 🙂 stay strong people. And now I’m so into travelling and pushing myself it’s been hard but it’s possible, I’m very aware of my leg all the time and I don’t put much pressure or weight on it and I’ve managed 8 years 🙂 hopefully 18 just like you.
I was googling how to sleep with avascular necrosis and came onto your page. I’m a 21 year old certified caregiver living with avascular necrosis for two years. I’m glad I found this site, I’ll definitely check it out more. I don’t feel alone, thank you for your words and time.
Megan, I,ve had s evere pain hip, femur, groin seems worse with therapy!
My MRI just says arthritis and POSSIBLE AVN.
Possible is not good enough. How can i be sure?
I cant sleep.nights.
On a cane daytimes.
Groin seems worst.
Help!
I cannot help as I am not a doctor. You will need to see an orthopedic surgeon.