Avascular Necrosis of the Femoral Head - Diagnosis, Treatment, and Total Hip Replacement
My husband was diagnosed with avascular necrosis of the femoral head in both hips at the age of 37. This aggressive condition has caused his bones to collapse, causing constant pain and severely reduced mobility. He is totally reliant on crutches around the house and short distances—and for longer distances he must use a wheelchair.
Hubby first presented at the GP surgery in December 2009 with pain in the right hip and was told it was a groin strain. After a few weeks it wasn’t getting any better, and so he went to a physiotherapist. After several sessions, including acupuncture, nothing seemed to work and the pain level was increasing, so the physiotherapist wrote to our GP requesting an urgent MRI of the right hip joint. The MRI showed AVN, and a formal diagnosis was made the following April. Around that time the left side started to become painful, and by June he was diagnosed with bilateral avascular necrosis of the femoral head.
I have searched the internet trying to find answers about AVN, including its causes and treatments. A lot of the websites I found are full of medical jargon and can be confusing—and so I aim to write simpler explanation based on our own experiences.
What is AVN and how is it Diagnosed?
In layman’s terms, avascular necrosis is a result of the blood supply being cut off from the femoral head (normally because fat cells have become enlarged and prevented blood flow to the weight bearing articular surface of the femoral head), causing bone death and eventually the joint collapses. It is commonly bilateral (both hips) and occurs in younger persons, the elderly are not at risk of AVN as fat cells get smaller as you age.
You may find that you have to see your GP several times complaining of groin/hip pain before you are sent for any tests. Typically the first test is an x-ray (unless AVN is already suspected). As it takes time for the femoral head to degrade, early stage AVN doesn’t typically show up on an x-ray and the joint may appear normal. Following a clear x-ray result but worsening pain you must request an MRI scan. GP’s are reluctant to refer patients for MRIs as they are very expensive and so you must insist as it is the only absolute way to diagnose AVN.
What Causes AVN?
Anything that damages the blood supply to the hip can cause AVN, the most common being Corticosteroid steroid use, alcohol abuse, severe trauma to the hip and sickle cell disease.
It is highly likely that my husband’s condition was caused by Prednisolone, a corticosteroid steroid prescribed for eczema. He was given two courses of the drug alongside the antibiotic Erythromycin. It turns out that when you do just a little digging around on the internet these two drugs are not compatible with each other, and even though AVN is rare it’s most common cause is the use of corticosteroid steroids.
If you do a web search for AVN, as I did after the diagnosis, you will find that most of the hits are from sites in the US, Canada and India. The link between corticosteroid steroids (Prednisone, Prednisolone) has been known since the late 1980s and has been the cause of many medical malpractice lawsuits in the US and Canada because this drug has been prescribed without the patient being told about the potential side effects, it is now common for a doctor to obtain written consent before prescribing these drugs and a lot of doctors are spooked by these lawsuits. There is a clear link between avascular necrosis of the hips, knees, and shoulders with short- and long-term steroid use, particularly in men over the age of thirty. The drug stops the blood supply to these areas of bone and causes bone death, or necrosis. There are few treatments and the sufferer will normally have to have a total replacement of that joint. This disease is debilitating, can take a long time to detect, diagnose, and treat, and the sufferers will have their mobility severely compromised.
How can AVN be Treated?
When AVN is caught early there are more treatment options available. As soon as Hubby was diagnosed with AVN he immediately stopped weight bearing by using crutches. This did nothing other than make it easier and less painful to stand that if he were bearing all of his body weight without walking aids. Despite using crutches the pain increased and movement in the joint decreased very quickly. It seemed that within only a few months of being diagnosed his mobility was seriously compromised and he was unable to work.
The first treatment that the consultant tried was core decompression surgery. The surgeon drilled a hole into each femoral head in order to allow blood flow into the joint and release some pressure. In the left side a trabicular implant was inserted, its purpose to strengthen the joint and also encourage blood flow and cell growth. The hope for this surgery was that the AVN would be slowed, pain decreased and movement increased. Sadly with AVN, the only eventual outcome is a total hip replacement, and as AVN strikes the young it is better to stave THR off for as long as possible. New hip joints only last 10-15 years and will need to be revised, so the surgeon had to try this, first.
Hubby spent six weeks in a wheelchair following this procedure as you are not able to weight bear at all and then gradually got back on his feet with the aid of crutches. Throughout rehabilitation Hubby was having Hydrotherapy which did help to build some strength in his legs; the water supports body weight and allows much more freedom of movement with less pain. It takes around 6 months to show any improvement in pain and mobility following core decompression surgery and so we were waiting quite a long time for it to be declared either a success or failure despite knowing all along that it hadn’t worked as there was no improvement.
Six months later X-rays showed the AVN was progressing and that the procedure had not worked. The decision was made to replace both hips, starting with the right side as that was the worse of the two. The first total hip replacement (THR) was a success and pain has been reduced. As the left leg is worsening rehabilitation has been difficult and bar a few sessions in the hydro pool it has not been possible to do any exercises as he cannot weight bear on the left leg in order to move the right new joint. It is also difficult to say how much it still hurts with the new joint as the left leg is still agonising and getting worse and so is a major distraction from the new joint. The difference in pain will only truly be known around six weeks after the second THR when post operative pain has also eased.
The purpose of a total hip replacement is to reduce pain; the doctors do not promise a miracle cure and cannot tell you to what percentage of your normal self you will be after rehab. A lot of patients are able to continue as before, for example Wayne Sleep was dancing again only a few weeks after his THR, but he was not in a disabled state for two years before surgery. I think the overall outcome is influenced by what condition caused the need for a THR in the first instance, what type of replacement was necessary and for how long mobility has been compromised. All we can do is wait and see. My fingers, arms, legs, and toes are permanently crossed for a return to a normal life for both of us—but mostly for my husband to not be in pain anymore.
Hubby is having his next hip replacement in a few days' time and we hope that this is the beginning of the end. The end of constant pain, the end of not being able to do anything or go anywhere without considering access requirements and disabled facilities, the end of declining invitations to friends houses because they have stairs. I cannot wait to remove the ramps from our doors and return the wheelchair to the NHS but we mustn’t run before we can walk. Rehab will be arduous and long, with over two years of not being able to weight bear or exercise muscle he has no strength in his legs. It will take time and effort and there are still no guarantees. We remain optimistic yet realistic and hopefully I will be able to update this article with good news in a few months time.
I am not a medical practitioner and all comments in my article are based on my personal experience having supported my husband through two and a half years of constant pain and treatments. Please refer to the medical websites listed below for medical articles written by specialists in AVN.
Help available in the UK
When you have had your diagnosis, if you live in the UK, you will be entitled to a Disability Living Allowance. Assuming that your diagnosis has happened several months after the first symptoms started you should be able to claim straight away. Visit the DWP website and fill out the forms immediately. Make sure you tell them about your worst day as well as a normal day. They will tell you from when you are entitled to claim and do the rest for you. You may also be entitled to a Carers allowance, so be honest when you are listing what you need help with on a day to day basis. When you have your DLA certificate you can apply for a Blue Badge (disabled parking badge) which makes life a lot easier. You will also be entitled to road tax relief and a freedom pass (free travel dependent on the services in your area).
Get in touch with your local authority and see what they have available to you in terms of support. You may need additional mobility equipment in your house and an Occupational Therapist can visit you at home to assess your needs and then provide the equipment you need.
Walking will be difficult and unfamiliar places can be daunting, so get your GP to refer you to your local Wheelchair Service. They can provide you with a suitable wheelchair for your needs and maintain the chair for you. Using a wheelchair may be embarrassing at first, but as you become to realise that it gives you more freedom and independence you will use it more and more.
Do a benefits check, if you are unable to work you may be entitled to Employment & Support Allowance, Council Tax Benefit and Housing Benefit.
© 2012 mooboomoo