Osteonecrosis (Avascular Necrosis) is classified in stages referring to how far the disease has progressed. There are the Ficat and the Steinberg Classification systems. Most orthopedic doctors use the Ficat classification system to determine at what stage your disease is. The stages are as follows:
Stage I:
- X-Ray: ON (AVN) is not detectable.
- MRI: there might appear slight bone marrow edema or joint effusion. Joint effusion most commonly appears in the knees.
- Bone Scan: evidence of increased uptake. Increased uptake is mainly due to increased activity of osteoblasts (cells responsible for bone formation) associated with new bone formation, and to a lesser degree by increased blood flow to bone. Increased uptake is an indication that there might be a tumor, fracture or infection.
Stage II:
- X-Ray: mixed osteopenia, a condition where bone mineral density is lower than normal, or evidence of sclerosis.
- MRI: evidence of lesion; an abnormality in bone tissue.
- Bone Scan: increased uptake (see note above).
Stage III:
- X-ray & MRI: bone collapse of joint appears imminent.
Stage IV:
- X-ray & MRI: collapse of joint.
- Image taken from the Journal of the American Academy of Orthopaedic Surgeons
To learn more click here: Ficat Classification and Steinberg Classification
A lot of websites, talking about Ficat Classification, refer to the level of pain at each stage of the disease. One indication of early ON (AVN) in the hips is pain in the groin. However, it appears to me that the pain differs from one ON (AVN) sufferer to another. My ON (AVN) is in my distal femurs and the first time I felt pain was in my knee caps. As the disease worsened the pain ran like hot rods up and down my thighs.Take into account that every body is different.
Osteonecrosis (Avascular Necrosis) 
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I was recently diagnosed with AVN and it is sad that all the doctors I have seen so far tell me not worry about it. Instead they put me on a pain patch an anti-inflammatory medications and sent me home. Could someone please help me by suggesting doctors in Texas that I might contact I was almost accepted at the Duke Hospital in North Carolina they have a great program there but since I am over 50 years old I wasn’t a good candidate. I am a cancer survivor and I would hate to think this is something I can’t fight.
Margie,
Where is your AVN? Do you know what stage your disease is at? I’m presuming the doctors explained to you that probably the treatment for cancer is what caused your AVN. I know, it’s beyond unfair.
I’m not sure about doctors in Texas. I will do some research and let you know. I know there is a doctor in Colorado that I can recommend that many AVN sufferers have seen. Obviously you need to see a doctor who does more than just treat your pain. You need a plan of action. Don’t give up hope! I will get back to you!!
Cassandra
I have avn in both hips, cause unknown. You mentioned a doctor in Colorado, can you please give me their info. Thank you. Cynthia
Hi Cassandra,
Not sure if you’ll get this, but what is the name of the doctor in Colorado that you would recommend? I just had an x-ray of my left hip and the radiologist says it looks like early AVN. We are doing a bone scan to try and confirm that as I cannot have an MRI due to a medical device. I have many risk factors for AVN, so I guess it doesn’t come as a huge surprise, but I’m not thrilled. Would really like to find a solid doc I can trust with this as I looked at my local orthopedic center and the first review on their page was of an AVN patient who they essentially called a liar…who was then diagnosed with AVN in other joints (after already having it in their hips). I do not want to go there!!
Margie,
Have you been in contact with the Bone and Joint Clinic in Houston Texas: http://www.bjc-houston.com/
I’ve read on another AVN site about the clinic. Let me know if they are of any help to you.
Take Care, Cassandra
This link is broken. This is the link:
http://www.bjc-houston.com
Get ready for the fight of your life. I am 57 a multiple cancer survivor and i am in the advance/end stage of this bone disease. In which i read in medical journals and heard in MD lectures ; this disease is actually discategorized and will be corrected to bone cancer. The AVN is a symptom of bone cancer
There are bone graph options that are used to stop the effected bone from dying and spreading to additional bones. I was mot ever offered any treatment), options or alternatives. For 8 years i was not told anything but it was too wide spread. Eventually my thigh bone and whole hip was dead no blood supply. It was suggested that I go oregon where human euthhanization is legal. At the start of avn I was placedon hospice. I have done that two different times. I now have it on my whole spine
Now the euthanasia doesn’t sound so bad
I t
Hello is this really true? I was diagnosed with AVN of my left hip in 2013 due to trauma but now it seems I dont have it. Does thatean I will get bone cancer in the future?
I respectfully disagree that AVN is a symptom of bone cancer. I have been living with advanced AVN for over 25 years but have never had cancer. By definition, cancer causes cells to divide uncontrollably while AVN causes cells to die.
For my son, I am currently consulting with Mark Katz in San Antonio, Tx ( was with Duke when they had AVN program). At the moment, the non-surgical hyperbaric and using a bone stimulation machine at home are the priorities ,….and continued research …..and there are a lot of Chinese institutions treating AVN.
A young man called Klye Scott (kylels23@yahoo.com) wrote about Dr. Mark Katz on my site a few months ago. This is what he said “I used Dr. Mark Katz in San Antonio Texas to treat my stage 4/5 AVN. He specializes in doing Free Vascularized Fibula Grafts to treat AVN. He is an amazing doctor. He’s not the most personable guy you will meet but who cares if he’s a great surgeon!
Duke has a great program. There are also several papers on Free Vascularized bone grafts on PubMed. I’m going to be writing about them on my site soon. Good luck. Let me know what happens with your son.
Thanks so much! Will keep you updated!
Whoops, did not mean to imply home hyperbaric…rather hospital grade Hyperbaric Oxygen Treatment…
Well I am headed to Cedars-Sinai in Los Angeles, CA in two weeks. They treat AVN there and Dr. Guy D. Palement has agreed to see me. Has anyone else heard about the treatments provided at Cedars-Sinai? My pain has been so severe I called a priest and asked him to please tell my family I loved them incase something happened to me because I have been self medicating myself. My pain doctor asked me what I wanted next since the morphine patch didn’t work, pills, stronger patches or try injections I looked at him and said never mind and walked out. I am so depressed because it seems no one knows what I am feeling or how to treat me. I cry myself to sleep just so I don’t feel the pain sometimes so I don’t feel like I’m crazy and this pain isn’t that bad. My husband tells me it can’t be as bad as the pain I had during my breast cancer treatments and it makes me sad and angry at how little people know about AVN pain. God help us all who suffer from AVN we must educate the rest of the world about this condition and the pain we endure silently. We have to help others who are suffering silently and have not been diagnosed yet.
Margie,
Your post made me so sad. I understand and am so sorry about the pain you are dealing with. I know and believe when you say the pain is awful. Before I was properly diagnosed I was in so much pain that I felt like I was going to black out. It was so frightening I had never in my life experienced pain like that.
Where is your AVN? Did you see a post below about Dr. Mark Katz in San Antonio? Are you a candidate for stem cells?
This is an awful disease. I believe you will find answers, you will get through this. You will find strength from within that you didn’t know you had. Please don’t give up hope.
Hello Maggie,
My name is Matt. I have Stage 2 leaning into Stage 3 AVN. My doctor has me on Ultram for the pain, and has scheduled a hip replacement surgery for me. It’s in 7 weeks. Due to the increase of pain level, I don’t think I’m going to make it 7 weeks and may ask him to move it up. Good luck to you, and with your treatment.
Hi I’ve heard great things about cedars I’m actually headed over there see Andrew spitzer I have stage 4 AVN my brother has had it in both hips I’m 34 my brother 35 this disease is very fristrating I’m a general contractor and do a lot of physical work, they want to do injections for the pain but I refused.
Today I have my testing done at Cedar Sinai Hospital with Thomas J. Learch, MD he is Chief of Musculoskeletal Radiology and Director of the Diagnostic Radiology department at the S. Mark Taper Foundation Imaging Center. He is an expert in musculoskeletal imaging. They will be conducting test to confirm early stage of AVN and steps will be taken for helping with pain. This has been a very long and expensive journey for me since I live in Texas and have driven to California three times in one month but it has been worth it especially if I can finally be told they can help me. I will keep you posted with the out come of my visit but these are the best doctors in the nation at do treat AVN patients and offer several treatments before they offer surgery.
Margie,
Thank you for checking in and sharing what’s going on with your AVN. please let me know the outcome!
I too have AVN (in my right hip). I too am in the fight of my life to preserve the joint but I’m afraid I’m loosing the battle quickly. I can barely walk, I use crutches & a walker when I can, but I have a one year old that just started to walk (sort of) and you can’t carry a baby while using crutches…and the PAIN…this awful debilitating pain! I have an appointment to see Dr. Liberman, the chief at Keck USC here in LA,CA. I’m wandering if Margie had any luck at Cedars? BTW, my AVN was caused by a side effect to the hormone in the Mirena IUD! A possibility that would have been nice to know at the time the doctors recommended it.
Stacy..check out Dr Jason Snibbe I was referred to him by Dr Paimont who is part of the Cedar Sinai orthopedic group. They are outstanding I bet he can help you. Dr Snibbe doesn’t cut the muscle during surgery so your recuperation is immediate. I was standing a few hours after surgery and walking and climbing stairs with the therapy group 2 days after surgery. I haven’t felt so good in years I have faith you will find the same relief I did!!
I will thank you. 🙂
Hi Stacy. This post comes much too late and I have no idea if you will ever see this, but my AVN was also a result of using the Mirena IUD. I wanted you to know that you are not alone. I have been contacted by several women (through my blog) who also developed AVN after using Mirena.
Hi! Thank you for reaching out. It saddens me to know that there are more and more women getting AVN while using the Mirena IUD. It’s unfortunate that nobody in the medical industry really wants to look at the connection. I just had a total hip replacement of my right hip six months ago… And still dealing with pain, etc. Would love to hear more about others going through a similar situation. What is your blog name/address? My email is stacy@stacyhetland.com if you ever want to chat.
I’m not actively maintaining it any more, but if you are interested my blog includes some online research of Mirena IUD and AVN, and you can read several others experiences in the comments: http://www.learning2walkagain.blogspot.com
The search terms (and times they are used daily) alone are a clear indication that many women have experienced AVN or autoimmune issues as a result of the Mirena. It’s difficult being up against two giants in the US — big pharma and birth control (important to the US economy). I have nothing against birth control – just misleading companies that do not warm women of possible side effects and, unfortunately, other women, medical professionals, and the general population do not sympathize or want to change it.
It is a backwards, money-driven, not “my” problem, world we live in when such severe, life-altering effects become ignored or even criticized.
I’ve already had my left hip replaced and I’m having my right hip replaced this December.
I also started a petition on this topic: http://petitions.moveon.org/sign/mirena-iudskyla-iud-clotting
My email is listed on my blog if you ever want to reach out. I wish you all the best!
Stacy, how did they know it was the IUD?? I have one and have questioned several Drs about it contributing to AVN, and all said that it can’t cause AVN.
The treatment I received at Cedar Sinai was outstanding I can’t thank Dr Jason Sibbe and the medical staff at Cedar enough. I had to have a complete hip replacement because my AVN was stage 4 but the surgery Dr Sibbe performed was not as invasive so my recovery was quick. He does not cut the muscle during the hip replacement so I was up and walking the same day. Unfortunately I have AVN on the other hip so I will be scheduling my surgery soon but I am looking forward to it because I know that pain will be gone and I can start enjoying my life again…don’t give up there is hope for all of us.
My 14 son has AVN and there seems to be little information for his treatment. He was diagnosed in April and as of the past 2 wks he has mostly been using a wheelchair due to pain and inability walk. I’m looking for answers and options but our doctor doesn’t have much to offer. After a bone scan and recent MRI he now is suggesting a hip aspiration to rule out infection. Does anyone have any suggestions?
Hi Lana, sorry I
Did not see about your son. My son also had AVN
Inhip at 13. Feel free to contact me if you are not situated。 gloflin1 at bellsouth.net。
You have probably noticed teens are generally are not seem by same docs :-)as adults
Hey
first of all, I wanted to say great blog.
I just found out that the joint in my hip totally collapsed. Im on vacation right now and can go anywhere for treatment. Im wondering if anyone would know a doctor who can help me? I am a originally from Canada, now I am in China, ive seen two doctors here and are not taking the seriousness towards it, i do not want to do surgery though i have a friend who is willing to help be a bone donor, can anyone please me valuable information, if you want to know more reply and i will send my email.
much appreciated !
I am soon to be 37 year old female next week. I was dx in December last year of osteonecrosis in right knee. Had core decompression done in March 2013. Now I have it in my right knee. Waiting to hear from doctor what next step will be for this knee. Has anyone else had core decompression done?
I had a core decompression done In August of 2014. It did not work. I am 36, male, and very actively athletic. In May of 2015 I had a THR done on my right hip, and am now about 8 weeks into physical therapy. I wish I had done this sooner! The chances of a core decompression working is so small, I think that if I could go back and do it again, I would have just done the THR back in 2014. After my core decompression I spent 12 weeks on crutches and another month after that on a cane. Just to have it fail within a couple months. Until core decompression technology gets A LOT better, I would not recommend it.
I am so happy to say I am doing great after my surgery at Cedar Sinai and a million thanks to Dr. Jason Snibbe. I am ready and anxious to get the other hip done as soon as possible. Don’t give up sometimes we fear what we don’t know but let me tell you the pain I had lived with for years is over and I can once again walk and run with my grandchildren. I have even joined a woman’s boxing group at my age of 53 so keep the faith it’s possible to live again and without all those terrible drugs! God bless Dr. Snibbe and the ortho group at Cedar Sinai.
What type of surgery did u have done?
Katrina I had a complete right hip replacement I was stage 4 and I was in bad shape. It took me two years before they diagnosed me with AVN. Even after my MRI showed AVN my doctors here in Texas kept saying it was bursitis I couldn’t walk and on some days couldn’t get out of bed. I am a four year breast cancer survivor and now I can start living again I will need a hip replacement on my left hip soon but at least I can get around again.
I’m trolling the Internet as I am in a bit of pain and my inability to walk would be laughable if I wasn’t so worried about it. I have just flown into Texas from Montreal and am convinced flying exacerbates my condition. I was diagnosed with SPONK in The States and was turned away from the hospital in Montreal where the doctor said I was wasting his time; he didn’t even look at the imaging of the MRI on the disc. I heeded the orthopedic advice from the States and used crutches and a stick and was fortunate enough to get better. I don’t know what I have got but my ankles, my knees, my neck…..I feel like a great big swelling throbbing lump. Every time I get up I walk like a cripple but it eases over time, it’s just lasting longer than it used to. I guess I shall go to a Doctor and go through the motions once again of trying to describe the pain and weird symptoms. I was hoping there would be a place here in Texas I could go to.
I notice after sitting with legs bent it exacerbates as well. When I get up, I too look like a cripple. I’m just trying to ladt ad long as I can then I will need bilateral knee replacements. Hood luck.
http://www.bluetailmedicalgroup.com
I would love to talk to someone about AVN. I was diagnosed in June of 2014 Double hips. Had core compression on both m no luck. I live in iowa. I’m in so much much pain and my Dr. Says there is nothing he can do unless the hips collapse. I’m so depressed and no one understands how painful it is. Can someone email me. Thank you so very much. Zdrena@yahoo.com
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Does anyone know what the IUD connection is?
do you know of a treatment for osteonecrosis in the roof of the mouth. My daughter is 42 and was taking Zometa for bone mets from breast cancer. She stopped the Zometa last summer but the osteonecrosis is getting worse.
Anyone know of any Food Dr.s in Arizona. I was recently diagnosed and it appears it was from years of steroid use for asthma.
Good Dr’s in AZ
I like to say I’m a survivor of AVN. I had AVN on both hips but I did a lot of research and found Dr Jason Snibby in LA.. He did both hip replacements at Cedar Sinai in California and I am doing great! With therapy and water therapy I am back to normal no more pain killers. I also found out that RA has been linked to AVN so you might want to be checked for it. Don’t let doctors tell you there is nothing they can do… There is..but YOU have to decide if you want to continue living in pain or take the chance of getting surgery but with the right doctor and right hospital.
I can relate to the pain of AVN. I have AVN in both hips and both knees. I don’t know for sure the cause but I did receive a series of surgical cervical steroid injections as well as one in my right hip and two in my wrist. In January of 2014 I had core decompression of my left hip which was the first area I was diagnosed with AVN in 2013 of my left hip. Immediately after surgery I developed severe pain. In my left knee I think due to less blood flow since I had poor range of motion and not using that leg. After two weeks of weight bearing to the right due to the core decompression of the left hip I developed more pain to the right hip and knee. The doctor ordered MRI of both knees and my right hip. My worst fear became a reality when they confirmed what I already suspected AVN. I did my research and discovered the bone marrow aspiration procedure of the pelvis being used for AVN. At my request my doctor Charles Nelson, MD Chief of Orthopedics was familiarized with the research and used me at my request as his first patient at Penn Medicine. He did the core decompression of both right knee , hip and the bone marrow aspiration from the pelvis. The stem cells were added to the hip only. They can only aspirate a certain amount in one procedure and it was most needed for the hip. The surgery seemed a success. In October I developed pain again in my left hip. My doctor repeated the core decompression with the bone marrow aspiration of the left pelvis in November 2014. The stem cells were put into the left hip. I was symptom free of symptoms until May 2015. The left started to hurt first and then I had a fall going down some stairs. I begin using crutches and walker to avoid weight bearing on the left. The pain on the right returned with a vengeance! The pain in the right hip is indescribable. Now even the pain in my right knee has returned. I imagine from shifting my weight. The last year was a long hard journey and life changing. I though this technique was the right choice since my AVN was only stage II. I can’t do another core decompression the recovery is so long even with the stem cells. I am only 45 and I need my life back. One whole year was put on hold due to the three surgeries. I am probably going to do the bilateral THR. I just am going to take my chances. Can’t live with pain anymore. I can’t walk, care for my children or having any kind of quality life. Will update soon. I go back to Philadelphia for follow-up after another bilateral MRI this Thursday. Just keep me in your prayers I can tolerate pain until something is done. I know exactly how you all feel so chose your decisions well with the Core Decompression. It is time consuming and no guarantee of success. I did absolutely everything required including PEMF therapy and supplements to speed healing. Sometimes the disease is to much for young active individuals no matter how hard our efforts.
Hello, sorry if my story sounds long and boring. April 2014 I was diagnosed with GCA and PMR. May 2014 of which I have no memory I was in a coma for 5,days due to a head injury in which I fractured my skull, obviously came around and was diagnosed with Epilepsy. 8 months ago my Rheumy consultant put me on Alendronic Acid, four tablets for a month even when my bone scan was normal. Have had mouth pain for four months and have now been diagnosed with Osteonecrosis as part of my jawbone has died which they think is down to those 4tablets. I have taken ten courses of antibiotics and they have told me it is still not healed, although pain has eased. I really don’t know how many more tablets I can take? Now down to 21 a day. Many thanks
AVN in the ANKLE, my distal tibia has it from post traumatic injury (trimalleolar fracture). This is supposedly a rare area to have it, I am searching for the right doctor. Some of the doctors mentioned in these posts I have come across, but most are hip & knee doctors – not ANKLE. I am 44 years old, so fusion nor ankle joint replacement are acceptable options. I understand that I may have bone grafting, before joint collapse. When does joint collapse happen?!?!?! So freaked out, just diagnosed last week, the pain is non-stop! Best lead I have found is Dr. Brannon in Missouri / Kansas City. Anyone: ankle avn, specialists on ankles? Do I need to stay off of it as much as possible to slow the joint collapse? Sincerely. Kelly
Hi how is it going. I have AVN in same place after trimalleolar fractures. Could we stay in touch. It is very rare and one of the worst places to get AVN.
I have had it 3 years, postponed a surgery late last year & hope to have it this year. When? Another 6-8 weeks non-weight bearing! And no promises. The Dr I spoke with has never seen it, but he has the right attitude. I sure would like to know of a Dr who has treated AVN in the ankle – no matter where in the nation! I was stage III a year ago when I had my last MRI. It’s painful, but I just try to not think about it.
I was diagnosed with avn of my right distal tibia last week and put into an ankle boot. This week, they discovered it in my left distal tibia as well.
I have these heavy boots on both ankles now. From my own research I understand one ankle is rare, and I have it in both… Yep, I’m lucky like that, lol.
Mine was caused by corticosteroid use for Crohns Disease, which I was diagnosed with 20 years ago. Crohns caused all kinds of autoimmune diseases to rear their ugly heads. I used massive amounts of opiates to deal with pain. The trade-off was my memories. It’s not worth it to me. Over the last 18 months I weaned myself from all opiates, muscle relaxers, sleeping pills.. Nothing but Crohns meds and heart meds (have had two heart attacks and have stents in all 5 of my coronary arteries). I also lost 84 pounds during this time.
I’m only 56 yrs old and I feel so angry. Can anybody relate?
I love reading everything on AVN!! I feel like I have met new friends. Some days are worse than others, but I need a doctor here in Richmond Va. Does anyone know of one?
From
Richmond Va, you are between Sinai Hospital and Duke, both of which treat AVN… Although using different methods.
Michael monte is a favorite at Sinai and there are several at Duke – Dr David Ruch ( FVFG only) and dr Ruchard Mathers.
For stem, Sinai or need to go to some of the other docs listed.generally, this disease requires travel unless you just happen to live in one of the hubs.
Not Richmond, but you are between Sinai in Baltimore and Duke. They are worth consulting. I listed some of the docs I the wrong place.
Peggy Loflin 865-661-6900
Hi Peggy, I am looking for second opinions for my 10 year old son who has screwed and avn. Could you please forward the list of dr.s that you were speaking about? I am looking into all alternatives of treatment. We have gone through core compression and in healing phase of avn. Take care, natasha
They do FVFG at Penn, as they have some Duke alumni… Don’t know if you are candidate, but it worked for my son. It’s a tough road. Tough being an understatement… So sorry
HBOT is accepted treatment for ONJ.
Rx from oral surgeon usually. Insurance pays.
I am 47 and have had a lot of hip and groin pain the last 3 years. Finally my family doc ordered a mri of both hips. He informed me I had AVN in both, stage 4 on left and stage 3 on right. I have not seen any images of this and was wondering how urgent it is to correct and how soon. I am in S.W. Va and my Doc would not recommend anyone close by. Thanks, Roy
I would recommend hip replacement at this stage in your disease. I was a stage 2 and tried all the alternative less invasive treatments and surgery. I prolonged my suffering for two additional years. Those two years just lost because I was avoiding THR. I am going to Johns Jopkins next month to get my right THR and then following my recovery I will return to do the left hip. I tried the Core Decompression on both sides with the bone marrow aspiration from the pelvis injected into the surgical site of the hips. It gave me a few months of relief but in the end I am worse off. Please don’t waste your time with alternative treatments it will only prolong your suffering. Good luck!
Hi, Where in Virginia are you located? If you’re not too far from Greensboro,NC try these folks out http://www.murphywainer.com/
I have AVN stage II both hips and will be having bilateral THR’s done in the near future. Dr Joshua Landau is my surgeon.
Hi Mary.. I was diagnosed with AVN but the doctors here had no idea what it was and wanted to treat me as if I had bursitis. I did a lot of research on my own and found Cedar Siani in California treated AVN. I made an appointment online flew down there and the doctors there did several test and confirmed I had AVN. They referred me to Dr. Jason Snibby a specialist also the personal dr for the Lakers and Kings the hockey team. Well to make a long story short I had total hip replacements on both hips there. The best decision I ever made. With therapy I am better stronger and pain free from the AVN. Find a good doctor who is a specialist on hips Duke hospital also has a great group of doctors and I heard San Antonio Texas too. Good luck and do what’s best for you.
I’m glad to have found this site and hearing stories similar to mine, which is basically this: I was on crutches for seven months and experiencing severe pain in my groin. After several doctors’ visits and tests, I eventually lost movement of my right leg (the first time in the middle of a class I was teaching). I simply couldn’t walk. No one could figure out what it was until I went to an amazing neurologist who ordered the contrasting MRI. In November 2014, I was diagnosed with AVN in both hips. I had a THR the following February.
I hadn’t felt the symptoms in my left hip until recently. I went to the doctor again, and he said it didn’t look that bad, so we were going to wait until it got to the point of having another hip replacement. It doesn’t make sense to me to wait until my bone dies to have it replaced. It hurts when a bone dies in your body! I’m also pretty frustrated at having doctors who basically don’t know anything about this disease.
My mother had both of her hips replaced when she was in her 40’s, so I’m assuming it’s genetic. My liver is good, and I’ve not taken steroids (which, according to my doc, are the two greatest causes). In any event, does someone know anyone in Atlanta, Georgia who might have a good understanding of this disease? I spent a year of my life living with the pain and inconvenience of this disease, and the idea of doing it the same way again with the other side really hurts my heart!
TJ, You say you’ve not taken any steroids and your liver hasn’t taken a beating; two good things and two big causes of ON. But there are other causes that aren’t unheard of in the least.
As Sandra mentioned, there can be blood disorders that cause ON. Also, autoimmunity is a big cause. Not because autoimmunity causes ON, but because a clotting disorder can result from lupus, one of the most common autoimmune disorders. If you are one of the lucky lupies who develop Anti-Phospholipid Syndrome where your blood has a greater tendency to form clots, then that, too can be added to the list of potential causes of your ON.
What a pain in the butt; docs know that my having taken steroids many years ago for lupus, could have caused osteonecrosis (ON). But, so could the Antiphospholipid Syndrome that I developed from lupus. Then again, could it have been the Factor V Leiden mutation that I have?
What am I getting at? There are many potential causes, some more likely than others, but unless all causes can be ruled out, can the docs really know 100% what the cause is?
I was diagnosed with SLE and had positive blood test for Antiphospholipid, but how can i find out what specific tests to ask my primary care doc to request for me? there are no rheumatologists in the town i live in. I read in someone else’s post that Dr G is no longer practicing, and I’m in Columbus GA… how can i find a doc that knows about this to discuss this with?
thank you for your help
eileen
If you have been diagnosed with APS, which increases the body’s likelihood of forming a clot, I think the cause of your avascular necrosis or ON (it’s shorter!) APS can be the ausee because APS can bring along with it OTHER genetic mutations. There are the possibilities of other blood disorders causing your ON, such as Factor V Leiden mutation being the cause. A good hematologist-oncologist (or hematologist) would be able to sort this out. aaand know what other things to test for. Sometime they need a little history of why you believe that APS (a blood disorder COULD cause ON, but you can convince
eileen, r. Glueck is in ‘semi retirement’ but at last time he and I were in contact, he said to keep sending him patients. He is on LinkedIN. There are several levels of membership and I can’t reach him throgh mind, but through my husbands account. I CAN. So one of these days when I’m not busy with my blog here, I’ll be in touch with Dr. Gluecck. Easier for me to communicate with you through your e-mail. What is that, because Dr. Glueck is going to need that I think.
Eileen, The records here show that I’ve answered this post, but I don’t remember. If I haven[t, I’m sorry; if I have please forgive me. It being lite on a Friday night, I’m off to bed, but will check my reference books in the Am for you. Annie
There is something my Rheumatoligist told me that people with RA also suffer from AVN. I have had 2 hip replacements 2 lumbar fusions 1 last month to have the implements removed and replaced with stem cells. I also had 2 cervicle fusions and last year I was diagnosed with severe RA. I have been taking the methatraxate injections but they haven’t helped so my RA dr has put me on Embriel I pray this helps. Now I look back at all my medical problems and I am certain they are related somehow..genetics for sure.
I am in Georgia (Columbus) … And wondering if you found anyone well versed in AVN/osteonecrosis? I found a lot of info due to recent searching (because I’ve had lots of shoulder pain , x-rays show no cartilage is there anymore and I am despairing to think I’ll need shoulders replaced in addition to hips and knees… )
…Anyway on a FB support page I actually downloaded the codes for the specific blood tests but my primary care doc won’t order them, there are only 2 rheumatologists here and both have very negative reputations… I don’t have a clue how to find the kind of doctor to help me. I emailed Dr Glueck but have gotten no reply.
Oh, also, just to mention I live in Tucson, Arizona, and am 42 years old. I have Stage IV AVN in both hips and left shoulder and Stage III in my right shoulder.
Just recently diagnosed with AVN in both hips and I am scheduled for a bilateral hip replacement in a few weeks. Anyone have any experience with doing both hips at once?
I was recently diagnosed with AVI. I am an active person in my mid-40s, who doesn’t smoke, drink, use steroid treatments, or do any of the other things I have read that are common in AVI patients, so the diagnosis totally blew me out of the water. I also don’t run or do other high-impact exercises, however I do bike 50+ miles a week and like to go for long walks. I had recently been diagnosed as having a lacerated lumbar disk, caused by lifting furniture during a home remodel. I was feeling pain in my lower back, hip and down my leg. I was treated with a spinal injection, which helped the sciatic leg pain, but did not help the hip. They then did an mri of my hip and found AVI that was starting to collapse. I’ve been assured that my AVI is unrelated to my exercise regiment or back injury, however I am not confident, and want to avoid anything that could lead to a similar fate in my other, so far unaffected hip. My orthopaedic doctor consulted with his surgeon colleague, and it was decided to refer me to a specialist. Because my radial head and femoral neck have already started to collapse, my doctor is fairly confident the specialist is going to recommend replacement. While I’m not adverse to this, I’m curious if any of you who has already reached this stage have had long-term success with less drastic treatments? The literature I’ve read does not paint a positive picture, but much of it also appears to be cut and paste from other sites. Also, what are your exercise limitations post-replacement? I know running is out. No problem there. How about hiking and biking?
Hi everyone! I was diagnosed last week with AVN in my right hip, went to 2 different specialists here in Austin, and have been scheduled to have an anterior hip replacement in a week. Is it normal for it to be this quick? I am not sure the stage or anything of the sort, but they were adamant about it happening asap. I have looked online and am reading anything I can get my hands on, but any hip replacement recovery stories would be awesome. I am brushing it off to my family as no big deal… staying strong so my family doesn’t have to, but I am scared to be completely honest. What can I expect (taking into account that every case in unique, of course)?
Hi, My daughther is 16th. In April she was diagnosed AVN stage four. She was a gym- agonist. I leave in Italy. I am returned yesterday from Paris. Prof. Philippe Hernigou suggest me bone marrow derived mesenchymal stem cells. Sorry for my english. Someone can help me?
Alternative therapies ??? AVN stage 2- 3
My son is 14 as a result from steroids ( leukemia diagnosed 2012 ) he is left with severe AVN which came on in a matter of 6 weeks , his hips have been pinned and right shoulder has collapsed , he just came out of surgery again , they drilled channels into his humeral head to allow blood to get to the head of the shoulder
He is going to school in a wheel chair and is attending hydrotherapy 3 times a week, has anyone had any success with alternative therapies , medically we cant do anything for him until he grows and hope to God his hips don’t collapse further otherwise we are looking at hip replacments
I have recently been diagnosed with AVN of the talus bone in both ankles. There is also something going on in my hip; diagnosed as osteitis though now I wonder if it is also AVN. Has anyone here experienced AVN of the ankle?
Gail, ON of the talus was considered at one time, untreatable. There are issinno w /medical and surgical options and docs a nott just dismissing it as “all in your head” I don’t know where you live and don’t know if you’re even looking for a seconod opinion, or even if you want treatment, but ON of the talus needs to be treated by someone who is well-versed in the talus and knows his way around the foot. Here’s a link to ON who will go to the mattress and cross a rubicon to address YOUR problem and individualize your care. Sure, there are those docs who are JUST AS GOOD who are not on the list, but if you can travel, I’d highly selct one of thesehttps://ryortho.com/2013/10/the-top-26-foot-ankle-surgeons-in-north-america/
Hi – I was diagnosed with AVN of the Talus on the ankle. Dr is suggesting fusion. I asked about stem cells, hyperbaric, second alternatives, but he says no. Can you help me word my questions correctly to my Drs.? Lafayette Louisiana
Lavayete, IN, https://ryortho.com/2013/10/the-top-26-foot-ankle-surgeons-in-north-america/ a good place to start
Hi I have AVN in my left hip since 2011. Its in stage 2 I have a 3 month old and a 5 year old recently my husband left me. My doctor is saying total hip replacement but I don’t have anyone to watch my children. Is there any other help for me? Im 38 years old.
I am late stage with my Avascular Necrosis of both ankles. I was scheduled to have ankle replacement but my insurances won’t cover enough of the process which will leave me with an enormous out-of-pocket bill. I’m single, 63, disabled, have a mortgage, car payment , electric bill and other household bills. Which come out of my income which is below 2400 dollars. I already have enormous payments I’m making to hospitals and doctors. Now I can’t walk without great difficulty and severe pain. If I had the surgery I wouldn’t be able to pay my part and they now turn you in to their hospital collection agency. No choices for someone who wants a life. Now they want to try Nerve Ablation, my pain is because of the dead bone not the nerves around the ankle. Isn’t this an useless procedure to just give false hope and take what little I have left?