My husband was diagnosed with avascular necrosis of the femoral head in both hips at the age of 37. This is our story.
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.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
© 2012 mooboomoo
Abhimanyu on September 16, 2018:
Hi, I am 26 year old from India and suffering from bilateral avn of hips from last year and having homeopathy treatment and doing some exercises on bed but i can bearly walk limping. Now the pain has been started in my right knee also but my physician precribed me some sodium tab to take once a week. Owing to my age, he also suggested me not to look forward to any surgery for couple of years ahead. I want to know, is there any other treatment other than THR ??
Camille J. on August 30, 2018:
Hi I really enjoyed reading your post. I am 25yrs old and I was born with Sickle cell which as you stated can causr AVN. I have had both of my shoulders decompressed but I was never told it was only temporary so now after a few years I decided to stop putting it off and managing the pain. So yesterday I had 3 MRIs done and sadly and irritatingly the AVN is back in my left shoulder and also in both of my hips. My next option is either more decompressions or full hip and shoulder/forearm repair which dont sound fun at all. I'd love to talk about this more with anyone who has experienced this. Thanks for posting this
CaryD2012 on May 14, 2018:
I am. 53 year old RN from the US, I was diagnosed with bilateral hip AVN in 1999, 18 months after steroid treatments for a neck injury. I was 34 and had bilateral core decompression surgery with bone graft and went back to work full duty ( 10 hours. A day in an operating room) 6 weeks post op. A year later I was still having pain but was working anyway, I got hit in the hip with a stretcher and broke my hip. It was determined that both hips needed to be replaced. So I did the right first and was scheduled for the left 3 months later. When I woke up from the first hip replacement Icould not feel my leg from the knee down. I was diagnosed with peroneal nerve palsy or “foot drop”. The nerve on the side of my knee was injured. So I had surgery to try and repair that that did not work, then before my left hip was done I was diagnosed with bilateral knee AVN and laterBilater shoulders and ankles. This is very rare, so rare I went to the National research center for AVN at Johns Hopkins Medical Center in 2003. There only advice was to try and maintain with multiple core decompression surgeries. So now I am 53 I have had 28 orthopedic surgeries, I have not worked sine 2000. I am currently 3 weeks post op from my second Total hip revision on the left. I have had both hips done 3 times each. The most recent revisions due to metal poising from metal on metal implants. AVN is a serious condition that is frequently caused by steroids. Please tell your friends and family to be smart and only let Dr.s give them steroid when absolutely necessary. My son in law took 2 dose packs for severe poison ivy , he had a total. Knee at 28, he was diagnosed with bilateral hip and knee AVN, We found Dr Joseph Lane at the Hospital for Special Surgeries in NY. He did core decompressions with stem cells and my son in law has regrow the of new bone in his hips and no progression of the AVN in his other knee. If you are newly diagnosed try to find someone doing stem cell treatments.
Claire Jolley on January 27, 2018:
Thank you , this was so informative and helpful. I am waiting for MRI on both hips with strong possibility I have AVN
greg on August 10, 2017:
will I get AVN in other joints ?Will I have AVN for the rest of my life ? I already had both hips replaced ,because of AVN . I need to know what will happen to me.
venitta bennett on June 04, 2017:
go to this web site and see all the problems with prednisone in animals.....i don't know how it got approved in humans...https://www.vetinfo.com/prednisone-side-effects-do...
Nicke Crook on January 19, 2017:
I have this condition and I am only 23 years old, was just diagnosed with this just months ago... been having some strange pains all throughout my body so have been trying to find someone with the same condition and your post was the only one that came up in a google search was wondering if this has gotten better for him or what has happened since this post? Thanks so much hope to hear back from you soon!
Bal Rakshase on December 12, 2016:
Hi, I am 45 year old male living in Mumbai, India. Yesterday I diagnosed with AVN in right femoral head. My doctor say there is no treatment for it. He advised me to take complete bed rest for two months. I am so confuse. Please guide me
rathi on December 07, 2016:
Rathi hospital is one of the reputed and branded name across Gujarat of spine surgery. It is located in Ahmadabad city of Gujarat state in India.
Mike P on December 03, 2016:
Hello I was diagnosed with Bi-lateral AVN 35 yo male the result of sickle cell most likely. Stage 4 L and Stage 1-2 R. I had years of knee pain which went undiagnosed. After my first tot hip L my leg pain was so severe that it sometimes trumps the pain I had prior to surgery. I am thankful for surgery as I know I needed it but if pain is something you can live with wait as long as you can as a hip replacement is not a miracle cures when you are an active young person. Good Luck all!
prabho on November 22, 2016:
Hi friends I am 38 years old and been diagnosed with avn to both hip joints.Left is so worst and right is on the way of left. Docs suggested joint replacement for the left and I HV started homeopathy treatment for right joint. please kindly guide me ,rather I go for surgery or wait for result?
sandra townes on October 20, 2016:
I just been dx with avn and I was told my left femoral head was dead but no surgery because I was not in pain but I'm so confuse y wait till things get worse just fix it they are doing no proactive treatment they are just waiting for my hips to collapse. I need help.
Christopher on October 11, 2016:
Hello my name is Christopher I'm from Atlanta Georgia and I'm 31 years old I was recently diagnosed with AVN this past July 2016 but I had started symptoms early this year probably around the first of the year January and headache recently got worse around March and then increasingly still got worse around me and I lost Total Mobility in July of this year 2016 it is definitely been a struggle for me being that I'm only 30 years old and I'm a very active man working 2 jobs and all I've had totally changed my whole lifestyle and it is completely stressful they telling me that I need to hit replacement my first hip replacement in my left leg and then my second hip replacement in my right way although I have expressed concern to the doctor consistently that I feel like my right leg is doing the same thing that my left leg is doing so I've had a lot of back-and-forth with doctors and then the lack of proper medical insurance for myself has definitely been a problem I'm to have my surgery on the 1st of the year in January February of 2017 thank you for sharing your story is definitely a help I constantly always browse the internet for articles and information about Avn and support groups .
But I'm very hopeful and prayerful that after having my first hip replacement that things will get somewhat back to normal but if you have any information for additional information on AVN I would definitely like to know about it or if anybody has anything for that matter will be helpful I just really want to know what's life after hip surgery and will I be able to live a normal life the doctor is someone trying to give a vague answer
Shyron E Shenko from Texas on October 02, 2016:
I do hope this find your hubby much improved. I did no have AVN but the cartilage deteriorated in my hip after an accident. When I could no longer tolerate the pain. I did have a total hip replacement. Dr. Heerwagen is a wonderful doctor as I wrote about in my "Do You Need a Hip Replacement and What to Expect if You do" and my follow up after the surgery. "Countdown to a Total Hip Replacement." Within 2 months I was walking without my cane or any assistance. Within 6 months, it was as if it never happened minus the pain.
Blessing and Peace.
Carla Tucker on October 01, 2016:
Thank you for sharing for I have avn. Other People don't realize how debilitating it is. I guess they don't take my word for it or are not interested as it is not happening to them. A support group would be nice as Mr. Johnson mentioned is on fb. And I do not have a doctor I can trust as far as in the past. From now on, since this is real and the pain is wise and my mobility has gotten worse, I will trust God lead me to the right doctor/surgeon. I thought it would go away. Ha! Sometimes we need a doctors help. By golly. :) As my mother said to me once. Ty again for this very informative/helpful blog. Blessings to you all.
violet on August 18, 2016:
Hi this actually helped alot I have Avascular Necrosis let alone other things and I am only 17. I looked and read because the prednisone shot did not work and l was worried about the next step. This helped so much thank you!
Kristie on August 08, 2016:
My AVN story: 48 year old female diagnosed with AVN at the end of February 2016. It started with severe groin pain in my left leg at the beginning of Janaury 2016. Found out, finally, through MRI, that it was bilateral. I was told in March that the left side was beginning to collapse.
I researched the Internet and found Dr. Rafael Sierra at the Mayo Clinic in Rochester, MN. On May 10, 2016, I had bilateral decompression with bone marrow concentrate injection in both hips. The left hip was then fractured and "elevated" with bone matrix to its previous round shape ( the femur ball) . Dr. Sierra did the first one of this surgery 14 months prior after 10 years of AVN surgeries and extensive reasearch in AVN. The surgery was extremely painful even after Morphine PCA and a left leg nerve block. I stayed in the hospital ( Mayo) for two nights. I was no weight bearing in the left leg for 8 weeks. I advanced to 30 % then complete WB at 13 weeks. At that time, had cat scan and the ball looked good, but the result is still indeterminable. I swim with no pain. I am walking and feeling slight pain ( hopefully due to leg not being used for 3 months and new bone growth with WB. ) I have another xray in 3 months.
After surgery I had no pain in my right leg or where the bone marrow was harvested. The pain came from my left hip area only- exactly where Dr. Sierra said it would be. I cannot say enough about the Mayo Clinic and the expertise and professionalism of all doctors there. It is an amazing hospital with an amazing mission and amazing staff!
Even though I don't know how this story will end, I am grateful for Dr. Sierra and the Mayo Clinic for being pioneers in treatments to save hips in this horrific, bone destroying disease.
Kay on March 25, 2016:
Husband diagnosed with AVN in 1981. Surgeries followed. Believe it to be due to Agent Orange in Viet Nam.
Sadly. This week our 29 year old son received the same diagnosis!!!
Has anyone heard of AVN being passed down to next generation?
Thank you for your help
vinod on March 02, 2016:
Avn bhi thik hotaa hai kay
gopi on January 25, 2016:
Iam suffaring avn last 5month fitst mri report was very mild degree tel.but nex mri after 2month the stage 3 so im shoked than i was core decompression of both hips presant im rest later i experiance post
Donna Baum on August 03, 2015:
It would be helpful to know the name and location of the doctors who do joint and bone preservation ( Core Decompression, Stem Cells, etc).
Shyron E Shenko from Texas on July 05, 2015:
Oh wow, I had a hip replacement in 2012, my granddaughter was 20 when she had her hip replacement.
This is a very informative hub.
Voted up, across the board and shared.
mohammed rafiq on May 07, 2015:
hai iam 29 year old now iam suffering from Avn 2 in right leg and avn 1 in left leg . so iam taking ayurvdic treatment bu doctors are confusing me ayurvedic is not working but i feel better in ayurbedic . so i confused what should i do. plz any one suggest me plz .
billydean on April 25, 2015:
Very grateful to have found this page.
I am 34, male, good shape, but ex-hard alcoholic, I thought I got sober just in time to escape lifelong harm. after some scares. 4 days ago following an MRI my doc calls and said "I am sorry but I have bad news" I have AVN. I was in shock so I am uncertain of all the details and I am on the earliest wait-list to see him to discuss further options, but hip replacement eventually was mentioned. 3 months ago I was fine, running at the gym, walking everywhere, felt great, my life was looking better than ever. Then I developed a slight limp that was annoying, so I saw a sports massage therapist, it felt like it was muscular at that point, but within minutes after massage, limp. then I saw a chiropractor for several weeks, Up and down with pain and location, but always in my groin, inner hip . I wanted him to just yank and twist my leg in desire of the "hurts so good" relief I dreamt of getting. I am having a hard time getting in and out of chairs. getting in my truck, walking is fine, one or two days were pretty severe though. I thought now it was spine related. the Chiro said from x-ray my rt. hip was tilted. So back a 3rd doc for my 3rd round of x-rays, and the next day I get a call to schedule and MRI and now the news.
It's so new that I don't know what to think or feel about it also I fell down the stairs in a black out and broke my neck (c-7) in two spots 2 years ago and healed well from months in a brace. I had the scare of paralysis from that, and now I am not sure if that's a possibility again. No matter what I know I can persevere through anything that comes my way. but the fear is there. I live in Sitka, Alaska now and will be flying to Anchorage in the next few weeks to see orthopedics where I will find out in depth how progressive this is and what my options are.
Once again so thankful I found a place to hear stories of inspiration.
Popozin on December 30, 2014:
Hi Carol,Glad you had a happy New Year. Thanks for the encouragement! I deeftinily won't give up.I went on a great hike yesterday up to the top of Mt. Lady Washington in Rocky Mountain National Park. It was gorgeous but super cold deeftinily tricky to duck behind a boulder to swap out my ostomy pouch without my hands freezing but I managed fine. My shoulder hurt along the way but oh well. It didn't stop me from hiking and having fun. So far the other joints seem to be doing okay. Crossing my fingers it stays that way:) Hope you are well!-Heidi
firstname.lastname@example.org on November 22, 2014:
Hi,This is Shobha. i am a female aged 54. Diagonised with grade 2 avn in August 2012 Went about enqiring all opitons of treatment. thank god I did not take a hasy decision.found a doctor treating avn with ayurveda. Was skeptical of the science. Went ahead and after three sittings of 10 days each every three months feel grea.t a great science that has withstood the test of time. Other fellow patints MRI scana have shown reversal of avn. Will wait for another year before taking an MRI. Also improves general well being. I rejenuvated evry three months. strongly recmmend ayrvedic treatment
Kitt Ng from Manchester, United Kingdom on September 10, 2014:
I am 37 years old,I have had the AVN of the both hips stage 3 & stage 2. Waiting for opeartion i feel really hopeless and scare.
Dade on September 05, 2014:
I have had AVN of the hip for about six years...worst pain I have ever experienced...I am in the last stage,I was bedridden for five years but just could not take it anymore..Just went back to work..wish me luck...3 months and I'm still working but the pain is ridiculous
Elizabeth on July 22, 2014:
I am waiting on an MRI because ortho dr saw something on x ray that might be AVN. He said I don't have a lot of arthritis in my hips but I did have decreased rom and pain. Why wasn't it clear on X-ray and what did he think he might be seeng to send me for an MRI
Tiffany on June 25, 2014:
This hub is very informative. I have 2 children that have Sickle Cell C disease, ages 11&15. They have both been diagnosed with AVN. My son will have the decompression surgery soon and my daughter is being monitored. Whatever advice you have is appreciated. At this point I pray for a miracle.
Randy Robinson 74 from Broken Arrow, Oklahoma on May 14, 2014:
Greetings everyone. I have been in the stem cell industry, worked for several stem cell providers in China for 13 years. Stem cells is not a cure all. In most cases it cures the symptoms. But there are a few things it absolutely cures and the number one is femoral head necrosis. You do not want embryonic stem cells. You want "adult stem cells" which can be taken from your self but have a lower dose or the best umbilical cord stem cells or umbilical cord mesenchymal stem cells. These are taken after a normal healthy deliver, are a universal donor, are the safest and most effective cell out there. China is far ahead of anyone else in this field sadly and I am speaking as an American. I am the Director of operations for hope medical group in China and handle all International inquiries and set up the hospitals for our International patients to meet their satisfaction like a 5 star hotel which we also can provide free if you prefer not to stay in our VIP private rooms. I have many patient stories and case data to share with anyone interested. Our website is www.hopestemcell.com. My private email is email@example.com or firstname.lastname@example.org. You can reach me by a US toll free number 1 855 517 5550 and it can be forwarded to me anywhere in the world.
Raviraaj Agrawal from Ahmedabad, India on April 04, 2014:
I am suffering from avn since November 2014 and have been taking Osteofos since then. We had been to a couple of orthopedics then who suggested core decompression and some who were against it. My pain has reduced to the extent that I can sleep and walk slowly without crutches. Smriti Mishra and others please post your email addresses. My email address is email@example.com. I wish all here reduced pain and recovery. This is one of the worst diseases that happen to anyone. God bless all.
shekhar on March 29, 2014:
Hi iam suffring from avn and I am doing pranayam and treatment by patanjali and I feel better.
mooboomoo (author) from London on January 27, 2014:
Thanks for reading and commenting amit, this article is just my account of what happened to us and I hope it can help and give hope to some other patients, whilst you haven't had THR yet and you are still very young, sadly once the necrosis of the bone has gone so far and starts to collapse and the patient becomes immobile it is the only option as far as I know. There are other options to be taken earlier in life such as core decompression and bone grafting which can be successful but after a certain stage if the bone is dead there's not much more to be done. I hope yours doesn't progress and that you can be helped and keep your own hips for as long as possible. Lots of luck to you.
I would like to add that my article and comments are based on personal experience and research on the condition. Please contact a profession medical practitioner for medical advice and treatment.
amit on January 25, 2014:
I am 18 and having avn stage3 in right and stage 2 in left hip but I am still walking without any aid and carrying my heavy school bag on my back .avn doesn't always end with THR.
Asekunlowo on January 03, 2014:
I have been living with AVN for two year now,the pain is unbreablen,I have use pain relive to the extent that the drugs doesn't work any more,here is my number for any advice or treatment.......07066669300,08072596356,08052603877,08055325214
Reddirtgirl on November 02, 2013:
I was diagnosed with acetabula dysplasia along with AVN of my left hip.
10 years ago I had 2 children within 12 mos of each other (yes, I know it was crazy).
I was told during the birth of my first I would not be able to give birth naturally due to my left hip being so narrow. This was the first time I had had any indication there was any issues with my hip.
After the 2nd baby was born 12 mos later I began having what I thought was sciatica. Went to the dr and did the X-rays, with in days I was called and asked to have labs run along with AN MRI. When we received the test results back the possibility of me having sickle cell and cancer was negative. Therefore, it was referee to a orthopedic surgeon in 2004. He began giving me options and scenarios of my conditions. Having 2 babies at home I chose to take strategic cortisone injections in my left hip to help deal with the pain until my children were older or I couldn't handle it any longer and I did very well with the pain..... Fast forward to 2013. I was under tons of stress with a divorce, a new job and insurance that has yet to kick in, my hip has completely broken down. I am now trying to work as much as possible until I have insurance (dec1)
And last week went in to work on crutches and was sent home w/o pay due to the legal and image issue. (I work in retail)
I am scheduled for surgery on dec 10 but am concerned that my job is in jeopardy. I reported my condition to HR prior to being sent home. I had filled out the ADA paperwork and was waiting to hear from the corp on if it fell under the disability act. Does anyone have any knowledge on this? I am quite scared of losing my job over something I had no idea would take place so suddenly. I went 13 years with dealing (somewhat) well with the pain but the AVN has now deteriorated my hip to basically nothing and standing or sitting is unbearable.
Help with any advice?!!!!
nichola on October 31, 2013:
my husband has not been formal diagnosed with osteonecrosis yet but he,s had scans after scans ! his pain first started may 2013 and we just seen a consultant this week for it they now have said they don,t no the cause of it but blood supply has stopped going to hip joint and showed us on the mri the affected area . they are still not sure what to do maybe operate or hip replacement this sounds very much like what my hubby is suffering but still got no answers and what we did get did,t make sense to us very confused my husband just turnt 31 years old
Shegra53 on October 16, 2013:
I have AVN of my left hip and in severe pain - long time to diagnosis but at least I now know what is! I would not wish this on my worst enemy!!
My question - I have significant wasting of my lower leg - is this caused by the AVN?
My knee hurts all the time - in fact my whole left leg hurts!
Horrible disease - I fell and had my hip pinned 18 months ago and thought I would be fine - back to work and was walking well - my leg is now about an inch and a half shorter.
I feel I have lost my independence and I am so grateful yo my family. What though about someone who is alone ?
Hopefully I will have treatment and regain some part of my life!
I wish everyone who has AVN all the very best as I know how painful a condition this is. Sheila
Shegra53 on October 10, 2013:
Many thanks for your reply - so helpful to hear of someone who has come through this! My AVN stems, I think, from a broken hip after a fall 18. Months ago- symptoms are so painful! I saw my GP today and she was astounded that I had to go privately - NHS wanted to send me to pain clinic. I am now awaiting reply from urgent referral request made by my GP. Still using crutches and I have found that Shopmobility in the malls has been so helpful - I use a motorised scooter so that I can at least get out. Now on strong painkillers - I hope I am offered surgery as I don't think I could put up with this pain much longer - I think I am at stage 4, having seems my x-Ray - at least it looks like it to me! So pleas your hubby is doing well! Thank you again for your very helpful and supportive blog.
BrroklynBornJerseyStrong on October 09, 2013:
Thanks for this article and comments. I have been living with this for 5 years and finally diagnosed clearly about 18 months ago. ANV of the right hip with pain now radiating down to my knee. Now sleep deprived as a result. Found pain relief with Arthrotec at 75MG when needed. After reading these comments its obvious that I got this from Prednisone use to combat cluster headaches. I wold never have taken the steroids if I knew this would be the outcome. I have heard of a few new treatments one of which includes stem cell therapy in Colorado. THR now comes in 2 flavors. One is posterior the other mini anterior. posterior from what I understand cuts through a lot of muscle increasing the rehab/recovery time and makes a pretty big cut along the outside of your thigh or your butt Mini anterior is done almost arthroscopically and cuts the rehab/recovery time down to as little as 2 weeks. making a 4 inch incision Supposedly the best hospital/doc in and around NY is Hospital for Special Surgery Paul Pellicci with lowest post op infection rate in the US at the hospital with the lowest post op infection rate in the US but he will not perform mini anterior THR Mini anterior is done by Dr Alexiades. Mini anterior THR will not be used on obese people or people who have high muscle tone. Nerve damage is a risk with this procedure so you have to be a good candidate for it to be successful. At 58 and my quality of life decreasing as a result and risking hip or bone collapse Im gonna go for it this winter so I can get back to playing golf in the spring
mooboomoo (author) from London on October 08, 2013:
Hi Shegra53, I am so sorry to hear that you have AVN. Try asking your GP for a referral to a local physiotherapy department for Hydrotherapy - whilst you can't walk its important to keep moving and keep hold of as much muscle as possible and light exercises in a pool can help with this (your recovery post THR will be quicker if you can keep hold of some muscle). Your GP should refer you to an Orthopaedic surgeon and have an MRI to see the extent of the damage - the good news is that once you are in the system you should be put on a waiting list for the right treatment as it is affecting your quality of life. Keep your chin up - it's awful but there is light at the end of the tunnel. My man's hips are now two years and 18months old and he is doing really very well.
Shegra53 on October 08, 2013:
I have AVN of left hip - agonising pain for 3 months before seeing NHS physio - recommended me to pain clinic and that was it. I am on crutches and decided to go to private ortho surgeon - sent me for X-ray and immediately diagnosed AVN - said I needed THR - now waiting to see GP to see what to do next - I have been off work for four months and my job is now in jeopardy - can't walk, put on socks or underwear - I now have swelling over hip area - this has been a very painful experience and only hope I will now get some help - x-Ray cost £117.00 and consultation with ortho guy probably about £300 - at least I now know what is wrong - very very painful condition and I thank the writer for this blog.
Daniel on September 26, 2013:
Hello, have you looked into stem cells therapy? It seems to be very good: my friend worksin a clinic in Mexico where they give embryonic stem cells treatment and she told me they get better result than anything else... What's your thought about this kind of treatment? Most people that i talk with are scared because it's so new!
mooboomoo (author) from London on September 03, 2013:
Hi there everyone and thank you for your comments.
I am afraid that I am unable to offer any further advice than I have already written in this article. It is based on my personal experience of having a partner with AVN and it not medically based. THR was the best option in the end and has worked wonderfully, he will need two more revisions in his lifetime but right now he is 95% back to normal and living a normal life.
Beware of miracle medications purchased online (Ayurvedic), I have blocked many comments from people trying to advertise them on here. Talk to your doctor, ask questions and do research but in the end you must trust that the doctors have your best interests at heart and if you don't believe that then tell them and they will explain why they are treating you the way that they are. If you are still not satisfied then seek a second opinion. To trust your doctor is the best asset you will have in fighting this nasty and debilitating disease.
Smriti mishra on August 26, 2013:
Plz help me
Me too suffering from bilateral AVN wich was diagnosed in 2010, i was on medication i.e. osteofos 10 for these 3 years n painkillers too bt no such improvement is there
M having severe pain these days i can't walk much, nt even my flat,cnt climb stairs cnt drive my scooty properly n m on bed reat since last one month...i am very confused whether i shud undergo co decompression or not, m scared that wud it worsen my situation? Cn any one plz guide me?
AndyT on April 19, 2013:
Iamsunshinee....I would love to tell you what you can do exercise wise, but I never got that far. I had the decompression, off my crutches after a week, so was not given any true exercises to do since I was still exercising from my hip replacement. What I can tell you NOT to do is push yourself. After visiting my surgeon (or his assistant), which I completely trust, I was given the go ahead to return to work and my normal activities. Working for a week, up and down stairs and two rounds of golf, I though a third round of golf would be a good idea. WRONG!!!! I broke my femer neck right below the hole for the decompression.....now I have been on crutches for the last 5 weeks after surgery! So like I said...don't push yourself!
36y/oUSMC on April 08, 2013:
I had the core decompression surgery on both hip in May 2012 and I'm sad to say it didn't work for me. The pain came back within a month of the surgery and it was worse then before. I was already at stage two AVN but decided to take the risk. Later I realized it was a poor decision. Core decompression works well in patients with stage one AVN but has a lower success rate in patients with stage two or higher. With very few options left I decided to have total hip replacement on both hips. My first was in December 2012 which went very well and the second was in March 2013. The second surgery was successful also. Sorry for not updating this page sooner but I’ve been dealing with the recovery of both first hip replacement surgeries. Recovery has been particularly hard (mentally) so I decided to focus solely on my recovery. Now, I am one moth into the recovery for my second hip replacement and, having done is already, I'm in better spirits. My advice to anyone one considering core decompression you would be this. If you have stage one AVN then have the core decompression because the chances of it working recovery are greater. If you have stage two or higher AVN, and you can afford being away from work for a while then have the total hip replacement surgery. One hip at a time unless you have someone to take care you at home. I know the thought of having hip replacement surgery can be intimidating but take it from me, having core decompression surgery at state two AVN or higher is a waste of time and money. Not to mention the unnecessary pain involved with the recovery. Today I am happy to report that the hip pain is totally gone and my scars at the incision site are starting to fade. The recovery process is long (six months) but I was walking with no assistance after 2 weeks. Do I regret my decision to have total hip replacement surgery? Absolutely not! My only regret is not having the surgery done sooner. Again, if anyone wants a progress report you can email me at firstname.lastname@example.org and I'll let you know how things have progressed. 4/8/2013. Also, for those of you on Facebook, there is an Avascular Necrosis Support Group page that I am a part of. Lots of helpful information from people just like me. Here’s a like: https://www.facebook.com/groups/AVNinfo/
Iamsunshinee on March 14, 2013:
Hi Andy, Thanks for your post. I had core decompression last December and I still don't know if the surgery is successful. What are the exercises you can recommend to me? Thanks a lot! :)
AndyT on March 07, 2013:
I would like to post my experience with AVN at the age of 42, not to brag, but to help those that are worried about the hip replacements and the core decompressions.
I visited my family doctor for a pain in my groin, which ended with an xray. He didn't see anything on the xray and sent me straight to the orthopedic surgeon. One look at the xray, my surgeon knew my right hip was going to be replaced and the left hip would be decompressed. I did have an MRI to confirm.
Diagnosed in September, right hip replaced on Thansgiving eve, walking 3 hours after surgery (with a walker), discharged Thanksgiving Day 2012! Home therapy for 2 weeks, using crutches for the weekend, went to one crutch on Tuesday, then to a cane on Friday! After that, 6 weeks of physical therapy (which I never believed in, but I do now)! The last 2 weeks of therapy, I was walking in without the cane and doing steps at home with ease!
My core decompression was just last week and was told that it is an 80% chance of saving my left hip. The only pain I had was a feeling of a charlie horse on my thigh.
I hope reading about my experience puts some bad thoughts to ease. Everything I read before surgery seemed so negative, so I wanted to throw out alittle positive.
Mary on February 21, 2013:
What a great blog. I have been diagnosed with AVN of the knee, and I will have core decompression surgery next week, I am however concerned that this procedure is just the first stage and could result in me having to have a knee replacement. Anyone's comments would would be welcome. One other thing I should say is that I fractured my hip earlier this year and that is when the swelling started on my knee.
I await in eagerness for any comments.
bell4796 on February 17, 2013:
Hi Ihave just read your very interesting and helpful article and i would like to say thanks for the information,i have been on steroids for 3 years due to a condition called polymialga rhumatica and i started having trouble with my groin and hip and knee around 16 months ago, the hospital did everything except a mri scan where it hurt, they said it was my knee, back ,or spine , and i had 3 mri scans and a ct scan in different places, finally got a mri last september and the guy at the hospitall who did the bookings decided i didn't need it so cancelled it but i only found out 7 weeks later when i phoned up asking when it was, finally i saw a new guy who got me an mri of my hip and groin and saw him 2 weeks later for my results and he had me in next day to do the drilling of my legs, can't save the left one but maybe save the right one which was drying out through loss of blood but was being masked by the pain and amount of tramadol and other painkillers i was on, i am now waiting until this surgery heals and see what goes from there, to say i was seeing a neurologist and if you type in hip pain, groin pain and steroids you get the info about Hip Avascular Necrosis (AVN or Osteonecrosis) i can't believe that nobody thought it may be this especially as the main man kept saying he had to get me own on my steroids as they are bad for the bones,had a bone scan 3 years ago but not one since, the wife wants me to sue but i can't do it as the other stuff they have done over the years has been good, but thanks for the info about the other help as being in all day and banging around scratching stuff in the wheelchair is getting costly with electric and re paintings. hope your husband gets better and i am happy as after 16 months i now know what is wrong with me.
email@example.com on February 04, 2013:
I have AVN of the both hip joints.I had core decompression of the both hip joints. My right hip joint has recovered fully and it was in initial stage.The other left hip joint was in very bad situation.I didn't have the collapse of the femoral head.I was on bed rest and used crutches to avoid weight bearing on the left hip jt.Its been now five months I still have pain in my left groin and I am using a crutch.I have stopped all the pain killers. I do exercises for stretching and muscle strengthening. I have vegetarian diet and I have lost weight and I need to lose more weight.I did have a x-ray and there are osteo-arithritic changes and no collapse of the femoral head as of now.
Best choice of examination is MRI, the AVN can be diagnosed early in MRI. So if you please have pain in your groin area and it radiates to you medial side of the knees. Get a MRI done immediately,core decompression should be carried immediately as the prognosis is good if done early.
kt on January 13, 2013:
I have a VN and I'm at 39 year old female the orthopedic has told me that this is a very rare case the normal age for havinga a Ven n is 72 to 74 years old with a 74 theycan have the hip last 10 to 15 years around our. Age it will only last 2 to 3 years I've been dealing with. An ortho from miami with. Colegues between Miami to Orlando and they all say the same thing and no one will do the surgery ill run out of bone 2 Cut since it'll have 2 be done. Every 2 to 3 years given my age I'm being set up with a world renowned doc out of FL hospital that just deals with avn and hopefully he will have better news but every 1 around my age considering the surgery should bring up the issues I've been told because if there r no medical. Advancements or if there r who's to say having this surgery wont allow u 2 have a surgery. That hopefully they come up with later. Please b4 u get the surgery u ask them the average age for avn and younger pol how long it'll last u given ur age remember a 74 year old is like going 35 miles an hour. And our age is like going 100mph we. Won't have 10 15 years with it we. Will only have it 2 or 3 years b4 it gives out and at some point their will not be able to cut any more bone
Sachin on January 12, 2013:
Can you please let me know your contact number or mail id
mooboomoo (author) from London on October 05, 2012:
Thank you everybody for reading my hub and commenting. There are so many sad stories here and I wish I could help. It seems that AVN can strike anyone at any time and for various reasons, can effect different people in different ways and different treatments work on a case by case basis. All I can say is that this is our story and following double hip replacements things are looking better for my hubby who is for the first time in nearly 3 years almost pain free. he has a lot of physiotherapy to do yet and there will be some difficult days but the pain from AVn has gone. we can only hope now that medical science will move on enough so that when he comes around to having the hips replaced again it will be the last time.
Best wishes to you all.
Joelene on September 19, 2012:
My son was diagnosed with AVN at 14 months old. This was a result of Septic Arthristis knocking out th eblood supply. He is now 26 months old and has been in an abduction brace for 12 months to try to encourage growth. It doesn't seem to be working. Has anyone out there got a child going through the same thing? What did you surgeons do to help? We are in NZ and im afraid that we might not have the same technology available to us
Tina on August 21, 2012:
Hi, I have found your post very interesting. I am waiting for MRI results to see if I have AVN as I am suffering immense pain in my right hip, runs in bursts down my groin, around my knee and into my calf, I also feel it in my buttock. My movement is very restricted and I have lots of trouble sleeping because of the pains as mentioned above. I am 46 but I have been a patient on steroids for 30 years which is why my Rheumotologist believes this is related. I don't mind what they want to do with it, if it is that, I'd just love to be pain free. I wish your Husband lots of luck and thank you for sharing his/your experience. Very interesting.
Becky on August 19, 2012:
Thank-you so much for posting this, I am 23 y/o who's GP told me last week it is likely I have this condition - no doubt because I was prescribed steroids by a Neurologist who thought I had Optic Neuritis, a simple test later them deemed I did not - that has more than likely caused the damage. I had had a fall at work last year, fell on my right hip. Its been painful ever since, I'd been palmed off with Anti-inflamatories for months (they didn't work), until I went to see a new GP about migraines she noticed my limp & sent me for an x-ray. I'm grateful to her, because otherwise I would have just 'ignored it' as best I could. Thank-you again, this information has helped me a great deal in understanding it. I hope your husband has had success with his operation. Becky
ESHAN on July 10, 2012:
Is chinese herbal treatment trustworthy for curing early stages of avn
36y/oUSMC on July 02, 2012:
I was diagnosed with Stage 2 AVN 8 May 2012 and had Core Decomprssion Surgery on 24 May 2012. Before the surgery my pain was unbearable. The AVN hit me suddenly. One day I was pounding the pavement (running) and the next I could barely stand. Since my surgery I have gone from little to no pain in my joints. I was able to walk with out crutches the 3rd week (including stairs). Around week 4 I noticed an odd sinsation in my groin area...something was present that wasn't there before. I called my surgeon and scheduled a visit and he told me it was nothing more then increased blood flow in the tindens around my femoral heads...a sign that the surgery worked. I am now at 6 weeks after my surgery and my joint pain is gone. The only thing I feel is a kind of muscle pain in my groin; like pinching a nerve. As if my body is adjusting to something new. I have since returned to work and I have a follow-up X-ray scheduled in 2 months. My doctor has me taking a calcium/vitamin D suplament, a multi-vitamin and a bone medicin call Alendronate that I take once every week for 6 months. I believe it increases bone density and promotes growth but I could be wrong so I suggest you Google it. If anyone want a progress report you can email me at firstname.lastname@example.org and I'll let you know how things have progressed. 6/2/2012
mooboomoo (author) from London on July 01, 2012:
After core decompression you are not supposed to weight bear. Insist on the wheelchair or buy one on eBay.
debbie on June 30, 2012:
hi i had decompression done on my right hip on the 19th june this year my left hip is the same.my consultant told me i needed a wheelchair as i also heve it in my left shoulder but the hospital would not give me one and sent me home with a waliking frame.my consultant told me not to put any weight on it but physio told me i can use my toes to weight bare a week later and im getting little stabbing pains in my hip do u think iv done some damage or is this normal as i don't no what to expect thanks.
shameela on June 25, 2012:
hello, mam how is it for your husband now after THR ? my husband is asked to go for THR and i am wondering if its safe at the age of 39.thanx and pl reply
mooboomoo (author) from London on June 08, 2012:
It doesn't always end up in THR but in the case of my husband it has, and I was writing about our personal experience not generally. As I say at the bottom I am not a medical practitioner, this is just what happened to us. In addition, our Consultant did say that core decompression would only delay the need for THR, THR was always inevitable at some point for my husband.
Scott on June 07, 2012:
AVN does not always end in total hip replacement.
Lisa Adkins on May 25, 2012:
i would just like to say my hubby also has avascular necrosis he is 39 years old and he can not get any doctors to get him any help with it and the doctors want ever give us any straight answers i was wondering if maybe you could give some advise on who we might could get to help him he stays in pain all the time and when he hurts i hurt
mooboomoo (author) from London on January 16, 2012:
Then I shall add some, I'll see if hubby will let me post his x-rays too!
Liam Hallam from Nottingham UK on January 16, 2012:
Great hub- would have liked to have seen a few more relevant photo's to illustrate the subject