Feel free to write about your journey with ON/AVN. Share experiences with your doctors, how you came to be diagnosed and what treatment you have received, if any.
Note: Many people may comment on treatment they are receiving. Never take any medication or supplement without being under the care and guidance of a doctor.
Osteonecrosis (Avascular Necrosis) 
Hello,
I was diagnosed with osteonecrosis of the left hip in August of 2006, at which
time I was stage 2 with several lesions on my hip ball.
After a bunch of internet research, I made contact with Dr Glueck the following spring. Based on the blood work that he recommended, my lab results indicated
that I carried the genes that cause my production of ENOS (Endothelial Nitic
Oxide Synthase) to be deficient. This deficiency results in less Nitric Oxide
in the blood so the blood vessels are less flexible and smaller than they should
be.
So starting that Spring, I began taking 10 grams of L-Arginine (5 grams twice a
day) which, when metabolized, produces Nitric Oxide. Since then my lesions
stabilized and actually seem to have shrunk a little. The last time I visited
the ortho, he stated that I no longer needed to get my yearly Xray to check on
the lesions since they had not changed in 4 years.
The best source of L-Arginine is nutritiongeeks.com where you can buy a kilo of
L-Arginine powder for $44 and this lasts 100 days. Turns out that the
L-Arginine is a good supplement in any case help since it seems to help with
blood pressure issues and may be a mild stimulant of growth hormone.
If you have AVN, then you should investigate blood abnormalities as a possible cause.
-Danny Dishon
Danny,
I carry the eNOS mutation also and Dr. Glueck suggested I take 9grams a day of Arginaid daily. I take two 4.5g packets a day mixed with water. I order two cases at a time from First Option Medical at http://www.firstoptionmedical.com/Nestle-Resource-Arginaid-Supplement-Packets-Orange-p/35130.htm (If you spent over $100 it’s free shipping), but thank you for sharing the site you go to, I’m going to check it out. I couldn’t find it any cheaper than on the website I’ve been going to. I even went into a specialty healthfood store near my house and they couldn’t order it for me. Apparently, it’s also a great supplement for people with heart disease and diabetes, so I plan on staying on it.
I am going to be adding information to the site concerning eNOS soon. Isn’t it crazy how few doctors have heard of it? My rhuematologist and my hematologist had never heard of the mutation! One of Dr. Glueck’s clinical papers concerns the eNOS mutation, if you have a chance take a moment to look at it.
Whoa, are you ready for a diatribe? Originally dx with ON in 2005 with ON in my ankles and heels, I had an arthrocsopy in my ankles and the injection of coral matrix in on heel with the hope of revascularization in my heel. I’ll be a blue nosed gopher if that wasn’t successful and almost 8 years later…
I wish ON in other joints were so easily taken care of. A core decompression and eventual right TKR met with some success: I don’t walk with the limp I once had, but the pain that remains is due to ON in the fibula with wasn’t replaced.
I have it in the other knee and both hips and just had surgery for ON in my shoulder. Both ankles have collapsed, severely limiting any surgical options to fusion. I’m DEFINITELY not ready for that now, but not ready for the braces they suggest. Too cumbersome. So, I wince. But, I’ve changed from athletic triathlete to an obese non-active gal.
That is my reality, and has been for some years; but I’ve not accepted my reality, because I loved the life I had and I mourn that I no longer have any part of it. People say, “it’s time to move on, get over it;” but I’ve not been able to do so. I’m lucky to be loved by the most loving and understanding husband in the world.
I miss the skiing, the hiking, the running and not a day goes by when I don’t have pain; physical or emotional. I was robbed off my life and ON was the thief. I used to think that the thief was lupus, but there are so many causes of ON that all I can say is that ON was the thief of my life. So I blog about it, have a website and do my best to create awareness of this and other potentially related autoimmune diseases.
Annie, I can’t express to you how much I understand how you feel. When I was first diagnosed I felt like my entire world was collapsing. I had been a runner and had just moved across the country, away from my family and friends, and got sick six weeks later. My husband has not been able to look after me and I, at 34 years old, had to move in with my parents on the East Coast.
I know how you feel when you say that ON has robbed you. It has completely and utterly changed my life. It has taken me a long time to grieve for the life I had and accept what has happened to me.
I think it’s wonderful that you started a blog. I feel very passionate about this blog becoming a hub of information for ON sufferers because when I was diagnosed I felt like I was on my own in a sea of information that was overwhelming. Thank you for sharing your story Annie. I know how this disease has made you feel, but I will tell you that you come across as being strong and determined and I greatly admire you for that.
‘m glad you picked up on the fact that I AM strong, but what happens is that the bombardment never seems to cease. I can’t say that I was devastated when I received the diagnosis of ON, because I really didn’t know what it was and the discomfort I felt was fleeting. I wasn’t able to run anymore, but swimming (my main event-I swam the swim leg in relay triathlons) was my strong suit.
But now, ON is in virtually every joint and that does prevent swimming. Plus I have this rare complication of SLE, called Shrinking Lung Syndrome and besides this horrible shortness of breath, the medication I take for it is a pretty powerful immunosuppressant, making swimming virtually impossible because of the bacteria in pools.
I do see a trainer who is incredibly good; he’s an exercise physiologist and athletic trainer and provides corrective exercise plans for people who are caught between the proverbial rock and a hard place. The information he imparts as he customizes an exercise plan is INCREDIBLE. Steve is a valuable resource on what I consider my ‘team.’
Late last year, I was diagnosed with ON in both hips and shoulders. My doctors were so surprised by this since none of the “known causes” matched up for me and I was 32 years old. It started in my left hip and spread to my right. Within a few months, my right shoulder didn’t work. I started to think that it might have had something to do with my birth control (Mirena IUD), so I had it removed. And though ON started to appear in my left shoulder, it never progressed and it was my only fully functioning limb for several months. I have had three core decompression surgeries and a hip replacement after my left hip collapsed. After dozens of blood tests, the doctors still say they don’t know the cause. And they refuse to believe that it has anything to do with the hormones, steroids and silicone used in Mirena (sigh).
I am a mother-of-three and my youngest is just 16 months old. For the majority of his young life, I could not lift or play with him. I feel like he is just now warming up to me. It’s upsetting that my children will never really know who I am, actively. I love to ski on water and on mountains and being active was always very important to me. I am now extremely limited.
I have spent time in a wheelchair, on crutches, with a walker and now, with a cane. I am also just starting to realize that this is something I will always struggle with. When I was diagnosed, I hoped it was something I could overcome through surgery to get back to “normal.” But each day, that seems less of a reality and I’m learning to deal with it.
Thanks for providing an outlet to talk with others who are living with ON. Here’s more about me and my journey with ON/AVN: http://learning2walkagain.blogspot.com/
Hello! I was diagnosed with AVN/ON in my hips and shoulders in September of 2011. It started in my left hip with a limp and quickly spread to my right and I had trouble walking. Within weeks, it took over my right shoulder to the point that I could not even lift it. It started in my left shoulder, but never progressed after I have my Mirena (IUD) removed. My left arm was my only fully functioning limb for several months. I had 3 core decompression surgeries on my hips and my right shoulder. When my left hip collapsed, I had a hip replacement.
I still have not been given a cause for developing AVN. Blood tests have shown that I have a positive ANA and elevated ESR (indicating an autoimmune issue). I also had high levels for D-Dimer, which could indicate a clotting issue. I recently asked to be referred to a hematologist for further testing. Any suggestions there?
The most difficult part of all of this has been being so hands-off with my children. My youngest is 16 months old and for the majority of his young life, I could not lift or properly care for him. I still struggle with those things, though core decompression has greatly improved my shoulder. Sadly, I think my youngest son is just warming up to me.
I’m just now getting used to the idea that my life will never be the same. Initially, I imagined that the surgeries would “heal” me, but that was pretty naive of me. I’m learning to scale back and work around my physical limitations as best as I can while still working full-time and being a wife and mother-of-three.
I have a great support system in my personal life, which has made a world of difference (especially after recovering from surgeries and not being able to walk)
I have found it difficult to connect with/find others who have AVN. Although I know there are thousands of AVN sufferers, it’s been hard to find them online so I was happy to come across this blog!! 🙂
Denise,
I can’t imagine how hard it must be for you dealing with osteonecrosis while trying to be the best Mom you can be. It’s sad that you feel you aren’t as close to your youngest son, but when he is older, and realizes what you went through, he will admire your strength and look up to you!
Sounds like you have already had some blood work done and know you might have an underlining clotting condition. Under the tab clotting disorders there is the coagulation order that Dr. Glueck recommends for his patients. Most hematologists and rhuematologists will not recognize most of the tests. My rhuematologist knew a few of them and my hematologist seemed to only know of two. My advice to you would be to print out the coagulation order and take it to your hematologist. Keep in mind that many doctors don’t like it when you bring something to them that they don’t know about. My hematologist did not appreciate me telling her about Dr. Glueck’s work. When I asked her if she was interested in any of his studies she said she didn’t have time to read anything, however, my rhuematologist was really interested and said he was going to contact Dr Glueck.
The codes on the work up are LabOne codes (I think), but you can call Dr. Glueck’s phlebotomist (I can give you the number) and they can give you codes for wherever you get your blood taken (Quest Diagnostics, LabCorp LabOne). The only test that can not be done in an ordinary laboratory is the eNOS test. Your blood has to be sent to a lab in Kentucky called Molecular Diagnostics Laboratories (I’m going to post all about how to do that tomorrow). I think it would be a great idea if you email Dr. Glueck (he’s on vacation until August 14th), send him your brief history and say that you would like him to help you. He is AMAZING.
After reading your story and your blog my feeling is it’s important for you to get a full coagulation work up. I flew to meet Dr. Glueck and started on low molecular heparin two months ago and there is already improvement in vascularization of my bone. It’s so important to understand and discover all the factors that went into you getting AVN. Idiopathic is just a word doctors use meaning, they don’t know.
Thank you so much! This is all very helpful information! I will take a look at the information you have already provided and will go from there. I know how difficult it is to try to inform your doctors about things. I have gone through this for months, and they usually don’t want to hear my “theories” or look at any information I bring in. It’s been pretty frustrating, but sadly, I’m getting used to it. That’s why I loved your post about being our own advocate.
Just out of complete curiosity – is your blood type Rh-negative?
Denise,
I know this sounds crazy, but I went through all my blood work records and I can’t find what type I am. I think if I recall, from when I used to donate (of course long before I knew about my clotting factors) that I was the universal donor O negative, but I’m not 100% sure. I should probably find out. I’m a bit embarrassed I don’t know now that you ask .
Found my blood donor card. I’m O Positive. I should have known that!
Hi there ..
I’d like to tell you all a bit about myself & how I ended up with avascular necrosis.
Twelve years ago I was diagnosed with Osteoarthritis in my right hip… it took a few years to get this diagnosed, the doctors thought I was too young to have Arthritis ( aged 26 ) so it was disregarded to an extent. I was in so much pain & my GP wasn’t the most helpful, so I decided to go private & to pay for it.
I was then sent for a bone scan, nothing showed up, next was an MRI slight arthritis showed up on that. My pain level increased so bad that I went back to my GP & begged him to find me the best specialist in the UK .. He referred me to an Orthopaedic Surgeon in London on the famous Harley Street, he said that my leg was misaligned so he proposed that I had an op basically to break to bone & re-align it… EKkkkk I thought. I was very busy at work as I worked in my own Company so I put it off.
Something still wasn’t right, so I did some research of my own & found an orthopaedic surgeon in London who I thought was suitable, asked my GP for a referral to go private yet again & off I went to London. The hospital there wanted a few x-rays; the Ortho diagnosed Osteoarthritis & said that I would need a full hip replacement within the next few years. It took me a while to accept this but at least I knew what was wrong me.
A few years’ later things started to worsen, my pain meds increased more & more. My GP referred me to see an NHS Orthopaedic Surgeon here in Scotland, he took one look at my x-ray & his face was a picture… he said that my hip had diteriated more, but once again I carried on.
Another year passed & I went back to see the same ortho .. After seeing the x-ray this time, his face was a bigger picture… This is when he diagnosed me with Avascular Necrosis in my hip… that was nearly 2 years ago.
Last year my GP referred me to a Pain Management Specialist to control my pain levels. I visit him or speak to him on the phone every few months to keep on top of things, plus regular visits to my GP who is great with me. It took me a wee while to find an understanding GP, and one that I can work with. I think it’s so important to have a GP that understands this terrible disease.
That is SOOO hard and I’m glad you’ve finally got a GP who finally understands. That’s half the battle. Too bad you have to be your advocate as much, but health care has become that model.And the advocacy usually works in favor of the patient. I just don’t like to see patients who suffer, getting run rough-shod over.
When they have ON, EVERYONE needs to be onboard with that. If you feel that someone has a dismissive attitude (“you’re only 26, too young to have AVN/ON, TELL THEM. They need to know, and if they won’t be told, won’t be enlightened, it’s time to go shipping!!
Annie
Thanks Annie, It seems the world over that patients are having to be their own advocate more & more. . very sad really.
I just came across this post again.es,Y in on way its sad that patients are having to be their own advocates more often. Thing is, that is the direction health care is going and until it is funded correctly (so that the people who work in the field are paid what they’re worth). Health care providers and patients alike suffer when there’s short staffing; patients suffer when staff is pulled so thing that they don’t have the time in their day to look out for patients the way they should and to teach them.
Hi There,
Here is a little bit about myself. Two years ago, my daughter was graduating from high school, we were getting things ready for everyone to come in for the big day, moving things around to make room for everyone to sleep. I kept getting sharp pains in my groin area, and it hurt to sit down or stand up, or even bend over, so I was very slow with helping. So I would pretty much tell everyone what to do. The day of her graduation, I went and sat on the bleachers for the two hours and when it came time to get up, I couldn’t move, I was literally stuck in the sitting position. My dad, ex-husband and my room mate had to pick me up and carry me to the car. They took me home and I called the Dr’s. office, they told me to go into the ER, well I couldn’t go into the ER.
So I waited until Monday and went into his office, he of course just prescribed steroids telling me I just had some kind of inflammation. After a year of going through different steroid packs, he decided to send me to an OS for my knees, I have no idea where he got knees out of groin pain, but he did. Well the OS sent me for MRI, said I had just torn my meniscus, and sent me PT, after three weeks of PT the therapist asked me to do a hip exercise and my hip actually locked up, which meant I couldn’t move it at all. I was stuck in the position I was in. No one in the office could get in unstuck. So they called an ambulance to take me over to the ER. They took x-rays, and the Dr. gave me a shot of pain medication and forced my hip back in place.
A week later, I was dx with AVN in both my hips with total collapse. A month later, I had bilateral THR, and that was a year ago. However, come to find out. I had AVN in my knees back when the OS sent me for PT to start with, He just didn’t know he was suppose to be looking for it to begin with, So, I had AVN in my hips, and knees, now, I have it in my ankles and my right shoulder.
I have the papers from Dr. Glueck but I can’t find anyone down in Georgia to do the tests for me. My rhuematologist said for me to bring them with me next time I come to see him, so maybe he will help me get them done.
Hello,
Thank you for visiting my blog and sharing your story! Is the blood work Dr. Glueck sent you on two yellow papers? Like the ones on my site. If so, you don’t need a doctors permission to take the tests. Those papers are the prescription all you need to do is fill out your name and birthdate. As long as you think your insurance will cover them you can take them into Quest Diagnostics, LacCorp or LabOne and they can call Dr. Glueck’s phlebotomist get the correct codes for the tests and that is that. dr. Glueck will receive the results and let you Know what they are. As I mentioned, in some other posts, a lot of rheumatologists won’t recognize many of the tests and neither will hematologist. If you have contacted Dr. Glueck and he is willing to take you under his care ( he never turns anyone down, even though my insurance covers him, he never charged me a penny!) I would go ahead and do the tests as soon as you can. Let me know if you need any further advice or help with what to do 🙂
Hello,
It is heartening to see that people are still providing information through the internet and sharing information. I was diagnosed in 1999 with multifocal ON (bilateral knees, ankles, shoulders and hips). My hips were replaced in 1999 and since then I’ve been tested with Dr. Glueck’s testing regimen and additional genetic testing all with no genetic or clotting disorders found. I also had core decompressions (CDs) with Dr. Mont in Baltimore, autologous stem cells following the protocol developed by Dr. Hernigou by Dr. Joseph Lane at Hospital for Special Surgery, and traditional Chinese medicine therapy at Hospital for ON in Beijing, China. I was also evaluated by Duke’s FVFG program and was deemed not an appropriate patient. I have been followed by Dr. Dennis Burke at Mass General who performed my hip replacements. He has maintained since 1999 that until modern medicine develops an approach to replace dead bone, successful healing other than replacement will not occur. My ON has been determined to be the result of the use of high doses over a short period of corticosteroids for the treatment of an ulcerative colitis flare in 1982. I have received high doses of opioids as part of a regimen for chronic pain management in my ankles and knees. My shoulders have been the least painful of my joints since that time. In all follow-up MRIs/xrays since 1999, there has only been one instance where there has been any progression or change from the original assault that created the areas of dead bone in each joint/bone. There is evidence of a change in one knee. Dr. Burke’s view is that once the incident of dead bone occurred (the assault) and depending upon the extent of dead bone it is unlikely there will be any change. If the incident of dead bone is significant enough there will be progression as in the case of a collapse of a joint. I have had different explanations about whether I am a candidate for knee replacements-one doctor wanting to replace, Dr. Burke saying that the area of ON is not in an area that would benefit from replacement, and one that the damage isn’t extensive enough to have a replacement. With respect to my ankles, one doctor recommended fusions, one said my ankles have too much damage and there is a question of is there enough healthy bone to support a successful fusion. In all cases, the doctors have said that ankle replacements are not sufficiently developed to recommend replacement with current technology. My shoulders have not advanced to the point of requiring replacement. As a result of the requirements of my long term disability insurance policy I have seen at least one doctor every month for the past 13 years. I have also communicated with Dr. David Hungerford for several years He is one of the early pioneers of core decompression surgery and the study of ON at Johns Hopkins. His view is that the successful treatment remains a challenge for ON patients and physicians.
There continues to be the need for research to identify patients who are at risk of developing ON especially when receiving corticosteroids. It would be extremely helpful if patients receiving corticosteroids could receive the testing identified by Dr. Glueck or if some other testing protocol could be developed. The challenge is to have a cost effective protocol that would warrant complete testing. Additionally, for many receiving corticosteroids they are prescribed as an emergency/lifesaving treatment where pretesting is not feasible.
Because clotting disorders pose significant risk for stroke and other life threatening conditions, there should be a movement to have more pervasive screening if guidelines could be developed to identify those at risk who should receive this testing. Also, at the time of my testing, all of the tests were covered services as they were performed through MGH’s laboratories. I do not recall if they had been performed by the lab recommended by Dr. Glueck they would have been covered services.
As a result of my concern with chronic pain management and the struggles patients have with this area as well as my realization of the lack of treatments to eliminate pain I became involved with the American Pain Foundation and became an advocate for improving the undertreatment of chronic pain and to address the complicated issue of opioid treatment for chronic pain. Since 2009, I have focused my efforts on identifying more wholistic chronic pain treatment approaches and have become a Master Trainer of Stanford University’s Chronic Disease, Arthritis and Chronic Pain Self Management Programs. I recommend that people seek out these courses to provide an opportunity to learn self management skills to assist a person in managing the process of change that occurs when one is diagnosed with osteonecrosis. If anyone has specific questions about these programs please contact me (donfreeman51@gmail.com). I have also spent a fair amount of time addressing the side effects of opioid medicine and how it effects metabolic/hormonal aspects of my body and sleep issues. I also recommend a book “Why Zebras don’t Get Ulcers” by Robert Sapolsky. It is a guide to stress, stress-related diseases and coping.
Like many who have provided information on this blog, my life was altered dramatically by this diagnosis.
Hello, Don. I too am multi focal with it in knees, hips, one shoulder. I already posted my story. Your story is of interest to me because I had a local doctor too who did holes in bones (core decompressions) June 2011. I did not know it but that technology is pretty primative and has been around decades. I went to Dr.Lane at Hospital for Special Surgery to see if he could save at least my hips and shoulder. I waited 3 monthsfor that trip and it was expensive to go to New York. He told me sincerely he couldnt do additional core decopressions this time with stem cells because the doctor originally should have put the stem cells in. He was so sorry but he never previously had this situation of someone who already had core decompressions but now needed them done again this time adding stem cells. i totally believed that story. It was said with a straight face. He had is own reasons for not doing the surgery: my age at 62 or perhaps the extent of lesions. I’m now seeking to have it done overseas but not sure I can bring all elements together. Doctor is willing with 17 months gone to try to save hips. Yes, your similar situation is so interesting to me.
Don, What did you think of Dr. Burke? A good friend’s boss’s husband had him as a doctor, and recommended him to me.
Hi Patty,
Patty,
Your good friend’s boss’ husband made an excellent recommendation in naming Dr. Dennis Burke of Mass General. Not only does he possess excellent technical skills, he also has excellent empathy and patient relations skills. I have known Dr. Burke for over 13 years now and I wish that all of my doctors possessed 1/10th of the skills this physician has. He is the doctor that doctors have for their own families and their own hip and knee issues. One of the difficulties with Dr. Burke, because of his reputation, is that obtaining a new patient appointment can include a lengthy wait. However once being a patient, if there are any issues his staff works very hard to schedule a quick appointment. I have no reservations in recommending Dr. Burke.
One other aspect I appreciate about Dr. Burke is that if there is a procedure or treatment protocol he is not familiar with or doesn’t perform he will make an effort to assist a patient in seeing a doctor who does perform that procedure. He will tell the patient why he doesn’t perform the procedure or why he would not recommend it. An example of this is with Duke’s FVRG (I think I have the abbreviation correct) procedure.
Please write me if you have additional questions.
To piglet and rtina, I do hope you both can get tested for clotting disorders. I have no medical background, but common sense tells me look first to an underlying cause or causes and get medicated for it if you can. At the very least perhaps it will stop the spread of AVN from one joint to many joints. It sounds so simple but it took me 17 months to arrive at that point of view and none of the 13 orthopedists I consulted even raised the topic. I still probably would have thought it a waste of time but for one website that had a lot of discussions about it and my relative insisted I go forward and get tested. I owe a lot to that website’s discussions and even more to my sister who insisted I follow through.
I am so thankful for your blog and am now considering starting my own to document my journey and keep a timeline. I am 22 (23 tomorrow, but who’s counting..) I went to a local orthopedic doctor at the beginning of June for hip pain in my right hip. I was given an x-ray and told that it was most likely something that would go away and I could get something to take for pain and schedule a follow up. I had been dealing with pain for a couple of weeks and could not even cross my legs because of the pain, so I started crying when the doctor said this. I know my body and knew something was wrong. The doctor said my only other option was to get an MRI and I said then that is what I want to do. I got an MRI done the following week and the doctor received the MRI report on Friday afternoon. Dr. Tucker called me to tell me that the radiologist wrote in the report that I had avascular necrosis in both hips, and he said he had not seen the actual MRI himself yet, but wanted to see me on Monday if possible. I had never heard of AVN and he explained it and told me and I called my mom from college bawling and asked her to come and go to my appointment with me.
On the following Monday Dr. Tucker came in. He told me that after seeing the MRI himself that he did not believe it to be AVN. He brought in an older doctor who had more experience, Dr. Baker who agreed with him that I did not have AVN. They told me the MRI showed edema and inflammation in both hips, but that it was more in the femoral neck instead of the tip of the femoral head. They put me on a 10 day steroid pack and told me to stay on crutches for the next two weeks until my next appointment. At follow up with Dr. Baker two weeks later I told him I had not felt any improvement in the pain. He told me to remain on crutches and told me to start doing physical therapy for 3 weeks. Two weeks into physical therapy I was not able to do the same exercises that I had started out doing without having pain, so I moved up my followup appointment. He told me the next option I had would be to get a contrast MRI done, which he explained could show a labral tear. During all of this process I was reading online about hip problems in young people and trying to educate myself. I had scheduled to see my orthopedic doctor back home in Dalton, GA.
I went back home to Dalton, GA for my hip arthrogram so that my mom could go with me. I got it done, and the radiologist came and talked to me about the results. He said he did not belive it was AVN and he was 80% sure it was an acute fracture in my right hip, with no explanation as to the edema in my other hip. I took the results with me to Dr. Frix, a doctor I had seen growing up. He ordered me to get a CT scan done and then come back to see him again the next day. I got the CT scan and went back to Dr. Frix who told me he did not see any collapse and he believed I may have a stress reaction in the bone, which is what happens right before the bone fractures. He gave me a handicap parking pass and ordered me to stay on crutches for 4 weeks and see him back.
After 4 more weeks on crutches and listening to my gut, I finally scheduled an appointment with a hip specialist in Atlanta, GA. Well, with the specialists physician’s assistant actually. I saw Susan Snouse at Peachtree Orthapeadic Clinic and she told me the specialist, Dr. Stephen Smith, and her both looked at my MRI, contrast MRI, and CT scans and agreed that I had ANV in BOTH HIPS. She told me about the options out there and how my AVN was not a “textbook” diagnosis, which was why it kept being missed by other doctors. She scheduled for me to get a cortisone shot in my hip to try to relieve some of my pain, but told me to remain on crutches and come back a week after the shot.
I left Atlanta heading home to Dalton for my 4 week check up with Dr. Frix. I cried most of the way, and decided not to call and worry my mom with the news yet because she was working and it was her Birthday. I showed up at her work and calmly told her what I had been told, which was that I will potentially be facing a hip replacement at 22 and that with the lifespan of them, I would be looking at 2-3 in my lifetime and that is just for my right hip, with hopes that my left hip would not become symptomatic. My mom left work to go with me to Dr. Frix, and I informed him what the specialist had told me. He knew Dr. Smith, and called him to discuss the diagnosis. Dr. Frix ordered my to get X-rays redone. He came in and told me that after looking at the X-ray he was now sure that I had AVN because it was showing signs of collapse.
I was relieved to have at least a diagnosis after spending my summer crippled and in pain. It was the worst case scenario, but I finally was at a point that I could move forward from. One of my best friends, Lindsay is in nursing school at Emory and her sister graduated nursing school from there last year. When I told her about my diagnosis, the end of our days taking runs together, and my inevitable hip replacement I was facing she was shocked. She told me to check into Dr. Mark Hanna. She told me about the benefits of the anterior approach hip replacement his performed and how her sister worked in his unit at the hospital. I made an appointment with Dr. Hanna because I was interested in his procedure and the potential benefits it had.
I saw Dr. Hanna around the middle of September and presented him with my million opinions and discs I had accumulated. He told me he would be very conservative and not consider doing a hip replacement on someone my age until my hip was completely destroyed and I had exhausted all other options, even if that meant staying on crutches for another year. He said he would get opinions from several of the radiologists and call me within the next week. When I heard from him he told me they agreed that I have “some form of AVN” although it was quite different in that it goes all the way down the femoral neck. He told me this means that he would not even consider doing a core decompression on me because the holes are typically drilled in the femoral neck and he was worried that mine would collapse if it was drilled into. He told me he was very interested in my case and that he did not like that it was idiopathic because it is not typically seen in people my age, and when it is seen it is usually linked to steroid use or trauma. He said he did some research after seeing me because my case was a curveball. Dr. Hanna told me he would recommend me go to a hematologist or oncologist to get checked for blood clotting disorders. He said he doubted that I would have one, but that at this point we were grasping for answers.
Since then, I got my cortisone shot. I cried the whole time, not because it was painful, but because I was looking at the screen the whole time and seeing how damaged my hip looked. When I left, I could not help but to smile. I had forgotten what it was like to not feel pain. It was the lidocaine that made the pain go away. They said the shots can help anywhere from weeks to months depending on the person. I think mine may have helped for a few days with the morning and night aches and pains, but I honestly think that was the lidocaine still kicking.
I scheduled an appointment that same week in Auburn, AL with my regular doctor to just routine blood work done. I also asked to get something to help me with my anxiety (and although I do not believe I am a depressed person) for depression. I needed some help coping with my stresses between my full course load during my last undergraduate semester, my devastating diagnosis, and the uncertainty of surgery and having to put off my post-graduation job search. My doctor helped me get all of this done as well as schedule me to go to the hematologist.
I got in a week later with Dr. James Andrews, famous among all top surgeons. He performs surgeries for many SEC football and Pro teams and has operated on Tom Brady, Bo Jackson, and Drew Brees to name a few. I saw him in the Auburn medical facility along with him team of 5 other orthopedic surgeons from around the country. They did not tell me anything I did not already know, but said that seeing a hematologist was a good idea, and that I need to go to Duke to see Dr. Ruch, who does the free vascularized fibular graft, which would be my best option so that I can put off a hip replacement as long as possible.
I got a call today about my blood work that was done the previous week. I had no clue what any of it meant, but as usual I have been doing my own research. My white blood count I was told was low at 3.8 (with their normal range being 4-10), my triglyceride level was high at 145, and my progesterone was a concern as it was only .5 (normal range being 10-25). I was told to take progesterone, which they called in to my pharmacy and to go get a recheck in 3 months. These things may all be unrelated, but good to know.
Right now I am trying to get my medical records send to Duke so they can decide if I am a candidate for their surgery. I also have an appointment with the hematologist on Wednesday of this week. Thank you everyone for sharing your stories and sharing your research and answers. I am hopeful to find the underlying cause of my AVN because I can’t sleep some nights thinking about the possibility of something being overlooked and it lead to my other hip becoming symptomatic or getting AVN in any other joints.
Mallory your journey sounds so similar to mine I can’t begin to tell you how much I understand everything you’ve gone through emotionally and physically. My doctors misdiagnosed me and i didnt find out for months what was wrong with me until I was in a wheelchair and in excruciating pain. Multiple doctors did not recognize my AVN, this happens all the time. And doctors always make excuses. I have idiopathic AVN, as I’ve written about on my website, and found out that I have clotting disorders. I read the blood tests that you have had done have you had a full coagulation work up to check that you don’t have any blood factors or protein deficiencies? If you look up the blood work I have posted online see if you had any of those tests performed. I recommend that you contact Dr. Glueck and have those tests run. If you do have any clotting disorders you shouldn’t be on progesterone you can’t be on any hormones for example if you have factor V clotting disorder. Also you shouldn’t be taking steroids if you have avascular necrosis. For many people even a two-week course of prednisone has caused osteonecrosis to spread to multiple joints. It’s a very rare condition and doctors do not know how to deal with it. And it presents itself differently in everybody so for doctors to say that yours presented itself differently is not true. It looks different in everybody, for example mine is in the long bone between my knees and my hips. The hips are the most common joints where AVN appears and the knees are the second most common joints, but you can also get AVN in your wrists or your shoulders or your ankle’s etc. If your disease is in its early stages and you do find out that you have a clotting disorder anticoagulants have helped many many people with AVN and have reversed the disease. I would most definitely get your blood extensively checked for clotting disorders that is one of the first steps to finding out why you got AVN in the first place. I would be happy to help you with anything. I really identify with your story! Good luck and thank you for sharing your story 🙂
I have seen “Duke” come up several times throughout this blog. Are you speaking of Duke in North Carolina? From a concerned patient diagnosed with AVN about 6 years ago….
Kim
Duke University. Have you read about their orthopedic department? Let me know if you need contact information.
I have an appointment with a hematologist tomorrow and am taking the print outs of the lab workups you posted. I emailed Dr. Glueck back and forth this morning and he told me that I should quick taking any estrogen medications, but said that progesterone should be fine. I also plan to get an extra vile of blood drawn while I am there to send to Molecular Lab that you mentioned. Is there a certain way I should package that to over night it? Not really sure if I need to give the hematologist the yellow or white workup that you have posted. The hematologist is through a hospital, not LabCorp. I have never been anywhere to get these types of tests run and am not entirely sure what I need to tell them other than “can you check me for these blood mutations?” I am planning on taking print outs of the research articles with me to show the doctor in case they try to question me getting those tests run or try to tell me that there would be no link. I am so hopeful that this will turn up something like a blood mutation that could give me peace in knowing I can stop the underlying cause. I just can’t sleep some nights when my mind is wondering and I am worried that this “idiopathic” AVN’s real cause is doing damage that will cause more joint problems. I am paranoid to the point that I worry and am stressed when finding a bruise, ache, or pain.
You sound like you are being really proactive!! You should be proud of yourself. All of this is very overwhelming. When I was first diagnosed I was having panic attacks all the time and went on anti anxiety and depression medications. I was an emotional ball of nerves. My best advice to you is don’t let your mind wonder into ‘what if’ situations, take each day as it comes. Worrying about what may or may not be is too overwhelming. You will find strength where you didn’t know you had it.
The two sets of lab work are the same tests just with different codes. If your hematologist refuses to do any of the tests have them contact Dr. Glueck. Be adamant, this is your life and your body! When you send the blood the packaging company will know how to send it. Make sure you overnight it so it arrives at the lab the next morning.
You are not alone. I know this time in your life feels really scary, but you will get through it and there are support groups on yahoo and Facebook if you want to chat to others who know what it’s like to have AVN.
Also I keep reading about procedures done for people and research results done and it all mentions what stage of AVN you are at as a factor. I have not had a doctor that has been able to tell me a specific stage of my AVN. Is that something I need to know, and how do I go about finding out what stage I am at? I am taking a stab and guessing it has to do with the amount of collapse in your bone, but I guess I am maybe in between stages where the doctors are just finally starting to be able to tell on an X-ray that my bone is a hair less symmetrical on one side where they say it is beginning to collapse. I feel like it would be something good to know.
Check out this link and it will explain the Ficat stages to you: http://radiopaedia.org/articles/avascular-necrosis-of-the-hip-classification
Hope the site helps. In earlier stages AVN only shows up on an MRI or bone scan, if yours isn’t really detectable on an x-ray your AVN is hopefully in its early stages.
Mallory, where do you live? The reason I ask is that many docs know about ON of the talus; but that;s it. They don’t know of treatment options that might be available and rather than appear not to know (after all, they’re human, too), the;ll not give you all the information that YOU need to make informed conclusions about WHAT YOU WANT TO DO. After all, this is YOUR ankle, pain when YOU walk, pain when YOU so much as stand on it.
To them, it’s possible that they stand to lose more if they bring up the state you’re in. However, there are docs who WILL tell you what stage you’re in and how they’d treat it. Also, there are docs to whom you can send your films and then they’ll read your films, go over medical history and accross the country, tell you what THEY’D do. They can’t give you medical advice, but some of these docs are NOT in OS for the money, they’d rather give of their time to see that YOU get a fair deal.
I can only speak from my experience, but Dr. Bradley Lamm has done this. There’s a practice in Denver and there doc;s do it. Check the listings in the database for Dr. Lamm and Dr. David Haun. There are others, who TREAT ON of the talus, but I don’t know what their procedure is when it comes to phone consults. Annie
Hi Mallory,
I’m not sure if you would consider contacting Michael Mont, MD in Baltimore. You can google him to find his information. I would recommend having a telephone conference with him after he has a chance to see your films. Dr. Mont is committed to keeping original bones as long as possible and he might have some suggestions for treatment options.There are mixed opinions among doctors about the advisability of prescribing steroids with someone presenting with possible ON. I’m not a doctor and urge you to ask Dr. Mont or your own doctor about this as well. Also, for identifying some of the clotting disorders, you might consider checking into the work of Dr. Glueck . If you google “Dr. Glueck and Osteonecrosis” you will find several references. I consulted a geneticist at Mass General who combined Dr. Glueck’s recommended testing protocol with other tests to evaluate whether clotting disorders were involved in my case. Unfortunately or perhaps fortunately, I had no clotting disorders. I was diagnosed when I was 47 in 1999, 17 years after receiving high dose, short term corticosteroids for the treatment of ulcerative colitis. In my case, I was diagnosed with AVN in my hips, ankles, knees and shoulders. I hope this information is helpful. I haven’t been actively involved in keeping up with the latest research for awhile. I urge you to talk to people who have had the fvfg, ask for names of successful and not successful patients if they will release that information to you. I have the name of a nurse who was diagnosed with multifocal AVN and clotting disorders who lives in Atlanta. If you are interested in talking with her, let me know and I can speak with her about sharing contact information. I applaud you for seeking someone to talk to about your mental health. Receiving the type of diagnosis you have received at any age is unsettling and life disrupting. You sound like someone who has been methodical in your pursuit of the truth of your condition and to determine the best treatment option. Having a team can be helpful and having a safe place to share the emotional ups and downs is extremely important. This is a time to also call on your personal spiritual resources and physical and emotional best practices. If you have specific spiritual or religious practices, call on them. If you haven’t a practice I recommend you use this time to develop a meditative practice and if you have a therapeutic warm pool that you are able to do non-weight bearing movement or even floating in the pool after developing a plan in conjunction with a knowledgeable physical therapist and your doctor. I’m not sure about warm pools and possible blood clotting issues to know if a warm pool is contraindicated.
After I wrote this I see there are other replies from people with Dr. Glueck’s name recommended. Please let me know if I can give you any other information from my own experience. I encourage you to keep records of all of your medical records and keep a chronology of the events that have transpired and be very vigilant about asking for contraindications of any medicine and procedure anyone prescribes or recommends. You are going to be faced with making a decision with long term implications. Depending on the true diagnosis and the degree to which collapse is evident will play a role in determining the time frame for making a decision. Make sure you have answered all of your questions before you make that choice. I’ll keep you in my thoughts. All my best to you.
Don, thank you for sharing your knowledge and experiences. I really appreciate that. I hope your information will help other AVN sufferers too.
With my clotting disorders it’s okay for me to go in a healing pool that’s about 95 degrees. In fact I’ve been doing it since I was diagnosed. I also agree with you that meditation is extremely helpful. I also study reiki which had been incredible for my mind, body and spirit. Thank you again for sharing on my site!
Don I am 2 hours from Atlanta and having no positive responses to my queries that already diagnosed hip van may be resulting in other joints… can you please refer me to the nurse you mentioned… I am heartbroken that no one in my health care system can help me and I already know how the progression of the hip van went undiagnosed for so long….
Dr. Mont is no longer in Baltimore; he is at the leveland Clinic
Thank you for your reply. I am a first degree Usui Reiki practioner. My wife is a Usui Master trained by Phyllis Furumoto, the current Grand Master and lineage bearer of the Usui system. My wife has been a Master since 1993. One of the interesting aspects of my initial experience with ON was that my wife would do Reiki and the pain in my hips would go away. In some ways this contributed to my thinking that my problem was a muscle or tendon strain as my doctor initially thought. It was only after ten months and significant pain and limping that I went back to the doctor when he had told me to come back after 6 months if there was no improvement. I can remember the place and scene as if it was yesterday when I first heard the diagnosis osteonecrosis when the doctor read the results of the xray to me. Keep doing the head positions to help settle your mind and also make sure someone does the back positions for your adrenals. I credit swimming in a therapeutic warm pool with helping me to regain my life. I’m sure you agree that the power of a warm pool is incredible as long as a pool treatment program is developed with a well trained PT.Take care, Don
I am attuned to reiki one as well, but I only practice on myself and husband. I am from the Usui lineage also, passed down to Chujiro Hayashi and then to Mrs. Takata, Phyllis was her great granddaughter. My reiki master was a purest. I love reiki. I think it has changed my life and been instrumental in helping me deal with my AVN. It brought me out of the depths of depression I was in when I was first diagnosed and I have continued to practice it ever since. I hope to become a master one day. It’s nice to meet someone else whose life has been changed by reiki. Some people are very open to it and others are not so receptive.
Thank you for your reply. Where are you living and who was your Reiki teacher? Phyllis is Takata’s grand daughter. Usui Reiki is wonderfully relaxing and does amazing things. Am happy to read of the influence it has had in your life and how you desire to become a Master one day. Please keep me posted about your Reiki experiences. Perhaps one day the home of Usui Reiki shall be in the desert area of Arizona, though it really resides within each person’s heart and goes where it is called to heal and bring vibrant good health to those who practice. If Fran can offer you guidance in anyway, please send along a note. Reiki has been a big interest in our lives.
Hello Don, i know this post is old but is there a way we can connect? Perhaps on facebook. Karen Mestas Oviedo Fl
hi Karen, please email freebo51@gmail.com would enjoy speaking with you about Reiki.
Hello
I am a runner who was dx’d with idiopathic AVN in August. When I felt an unusual hip pain and pains radiating down my legs, I made a brief stop at the chiropractor and then immediately went to an orthopedic surgeon. (I have learned to push for MRI’s; they can put you off forever on diagnostics)
The AVN Dx felt disastrous. I had just come out of a surgical nightmare last fall with a paralyzed nerve after thyroid-cancer surgery, followed by a fractured hand. This was all preceded by a very sad miscarriage( at 3 mos) which had been preceded by a whole year on and off crutches for tendonitis/faschitis. But to get AVN meant the death of exercise!
I am still shuffling up and down this sort of big hill that I ran on; I can hardly let go of my running, as it has kept me out of depression for about 25 years. It is killing me. I used to bike and swim a lot, but have bad knees for biking and hate swimming(and it is 75.00/mo to join the pool club)
Anyway, I found your blog almost right away and got to see Glueck..it took awhile to get the blood work, but I have PAI-I and eNOS, so take arginine and Lovenox.
The question I have is this: do AVN sufferers with clotting disorders get relief from joint replacement, and can they keep up the Lovenox routine to help heal or, uh..”stay vascularized”?
One to four years waiting for a little stabilization or regression sounds like so long for such minimal results!
Can you lend understanding to the idea of replacing(or resurfacing)joints while also on Lovenox,etc for the blood mutations? I perhaps am in the dark about the healing process of the femoral head and to what degree(and when)the femoral head rebuilds if revascularization takes place..
Thanks for this wonderful blog. Dr. Glueck is a doll.
Marcy
Marcy,
Thank you so much for sharing your story. As a once fellow runner I know exactly how you feel. I missed running a lot at first, but I finally accepted that it won’t be part of my life anymore, so I started swimming and I’ve been able to keep myself in good shape. Swimming is the best thing you can do for your body at the moment. The more you do it the better yo will get. When I was first diagnosed I was extremely depressed and was in a very bad mental state, so I take anti depressants and see a psychologist every two weeks. They have both helped me immensely keep a positive mindset, which is so important for your body.
Few questions where exactly is your AVN? has it progressed? Did the doctors tell you what caused your AVN? I was on Lovenox for three months and take Arginaid. My AVN has regressed after having the disease for a year. Lovenox can not be taken long term. The rate of recurrence with AVN isn’t really known, a lot of it depends on why you got AVN in the first place. I have five different clotting mutations which caused my AVN, so I am going to go on warfarin or Pradaxa for life. There are no guarantees in life, but for peace of mind and to keep my blood thinner, so it doesn’t clot again, my hematologist suggests I permanently take thinners. I’m also going to continue taking Arginaid.
At 9 weeks I suffered a miscarriage last year, some doctors think it was because of my mutations. Nine months later I was diagnosed with AVN. The last year has been the saddest and hardest year of my life, but I know now that I’m getting better. It’s a slow process, I still have good days and bad days.
I’m sorry this has happened to you, but I’m so glad you’ve been proactive and reached out to Dr. Glueck. You are right to push your doctors. I had to do it every step of the way. I’ve said it on here before and I can’t express how important it is to remember that no one is going to care as much about your body as you do. Don’t feel bad pushing for answers, it’s your body and your life!
Hi I started my AVN journey started in 2009, I got up from my desk at work and had shooting pain in my groin and within two days I was out of work and unable to walk or sit in a chair. Started the rounds of drs who thought it was probably from my back and I just felt like it was my hip I would leave their offices in tears because I knew something was terribly wrong and I’d been diagnosed with Osteoarthritis previously and knew it wasn’t that so I called and got an appt with my Orthopedic Surgeon and she agreed with me and ordered an arthrogram mri and when I was getting it done I told the dr I had my other hip removed 10mos previously (although they never did mri so didn’t realize it was AVN) so this radiologist tells me it sounds like avascular necrosis and here I am and as a nurse was unaware of this disease but I knew avascular meant without blood and necrosis meant death so I knew it wasn’t good finised the exam and went home had to wait a week to see my OS and get results but after googling AVN and reading about it it describes my symptoms to a T so I wasn’t surprised when I went on to see my OS and she confirmed it and that my hip was already collapsed. So I had no choice but to get another hip replacement since it was collapsed. I was hoping that was it but in the next year in a half I had to have a lumbar fusion, and two shoulder surgeries for rotator cuff repair and then last year they diagnosed R knee AVN which I knew I had for a year because it was the same pain as I had with my hip once you’ve had AVN it’s a very distinct pain and one you don’t need a mri to tell you. My first mri they said no AVN. A year later my pain was increasing and my OS did an xray and saw it on the xray and sent me for a mri and of course the radiologist report said nothing about avn only end stage arthritis but my OS said it was plain as day on both xray and mri so we asked for another reading of mri because I needed it in black n white since after 3 yrs and five surgeries I knew I couldn’t continue in my nursing career. Would you believe the second reading of my mri also didn’t state AVN I tell you that just so you know radiologists just aren’t trained to pick up AVN and they need better training, thankfully my OS was. So if you believe you have AVN in another joint don’t give up!!!!!! Right after the diagnosis in my knee I started hearing about Dr Glueck and his research and also two of my daughters were diagnosed one with lupus anticoagulant the other with polycystic ovarian syndrome and I started feeling like there was a genetic link so I first made an appt with my daughters hematologist and told him about dr gluecks research he wan’t familiar with it but went out to his computer and googled Dr Glueck and came back into office with all this info on Dr Glueck’s research and says to me this guy’s seriously legit and he would run a basic clotting profile and call me with the results. Now all I can say is that’s a great dr (my hematologist) one who’s willing to be educated and say I don’t know but I’m willing to find out. While waiting for my results I contacted Dr Glueck he responded within 12 hrs so I was pretty impressed already but he definitely felt like there was a correlation between my avn and my daughters diagnosis of PCOS and lupus anticoagulant. He gave me the whole list of labs to have my hematologist add to what he had already drawn and my hematologist was more than willing to work with him. A month later I finally had a diagnosis for my AVN I had the MTHFR mutation basically Dr G’s report said I had 4G4G homozygosity for the PAI-1 gene with high levels of gene product PAI-Fx and accompanying high insulin and c peptide are all major risk factors for AVN also my factor IX was high which is also associated with AVN. Dr Glueck now has me on gluchophage 850mg 3x day also B6 100mg day, b12 2000mcg day.
I can’t tell you how highly I think of Dr Glueck he not only gave me answers to my AVN, but has probably helped prevent me from getting diabetes and gave me answers to all my health diagnosis. and suggested all my first degree family members get tested.
Sorry this was so long.
Donna
Update on a post I made a while back. I got AVN in hips, knees, one shoulder supposedly from 3 weeks prednisone use February 2011. I had “core decompressions” supposedly by a doctor who says he is an “expert” on AVN the summer of 2011. In all I have seen 14 orthopedists including 2 trips to the Hospital for Special Surgery in New York. I wrote all over for stem cells, of course, because the core decompressions were not a “success.” Frankly, I am amazed core decompressions are still being done in America without stem cells. It took me precisely 3 months to find out that, without stem cells, that AVN is just going to proceed and my “expert” AVN doctor had no answers. I was 61 when I got AVN and nobody wanted me of course in their stem cell treatments. I belong to several AVN groups and in the spring 2012 a person posted she went to France and Dr. Phillipe Hernigou, who has written hundreds of articles regarding AVN and has trained American doctors in stem cells, did both of her hips at once. She had no insurance and gave the cost. I have insurance but it does not cover stem cells. My AVN is profound and I went to France 3 weeks ago and had stem cells in my hips. I do hope they work for me. The doctor said to come back in 3 months and he couuld do my shoulder and even try in another 3 months stem cells in my knees. (My knees have multiple infarcts in all of the bones that comprise the knee!) You can read about Dr. Hernigou’s success with stem cells by searching his name on the Internet. I also found out about Dr. Glueck through an AVN website and know I have 3 clotting disorders. I am working out now the details how to be on blood thinners. No orthopedist ever discussed clotting disorders with me. We need sites such as this to let each other know what to do and where to go because I can attest I learned next to nothing from the American orthopedic community. This is a rare orphan disease and without these sites keeping alive hope, one just ends up with joint replacements because there is so little knowlege by the orthopedic community what else to do besides replace the joint.
I wonder if the reason that orthos don’t discuss clotting disorders is that they’re too busy (that’s really no excuse, but the best I could come up with) to learn another field. If there were more people publishing about clotting disorders besides Dr. Glueck, they might pick it up; I’m going to ‘run it up the flagpole’ with my OS when I see him.
If I saw a patient with 5 joints and what one described as “profound avn” from 3 weeks of prednisone for an inner ear disorder, immediately I would think there is something very wrong that warrants investigation by another specialty. Does their silence (and I got all of the records of all of the doctors except for the stem cell doctor in France) mislead the patient into complacency? I asked my internist whether she thought I had a clotting disorder when I was stage one and she replied your complete blood count doesn’t show anemia. Truth is this rare grave bone disorder should only be treated by a few specialists in America and yet I did see one of America’s well known AVN specialists and he said nothing. I did want to add to my above post that Dr. Hernigou in France is willing to try stem cells on my knees notwithstanding my tibias, condyles, and femures all are involved with multiple bone infarcts. My only regret is two-fold: first, that I did not think of him earlier and secondly, my age. A person in their 60’s only has a fraction of the stem cells a younger person has. I also regret the cost but I blame that on the American Orthopedic community which has ignored AVN so long and continues to do so. Of course stem cells do not work for everyone. This is an investment of money in hope and it may not work for me. There is no guarantee.
Joan, unfortunately, when most docs are confronted with someone who has multi-focal ON (what is ‘profound’?) they’re more likely to scratch their head and say, “poor dear, what a life she must have to endure” That is, if the really understand ON and what it means to existence (its not just a diagnosis).
I’d run from any doc who said that I didn’t have a clotting disorder, because my CBC showed no signs of anemia! I do think that it’s important when asking someone IF you have a clotting disorder to say WHY. THis all goes back to the patient advocacy thing and an informed patient is one who is likely to build a partnership with a physician.
Then when that partner says to his physician, “could a clotting disorder be causing my ON?” the doc is more likely to run a clotting profile which will reveal something, other than a CBC which can EASILY overlook something.
But that takes me back to what I was saying yesterday, In that clotting profile, there are a cascade of factors that cause the blood to clot and if the body is deficient in ONE, the old domino theory…That could be the immune system destroying one clotting factor.
Actually, Annie, that internist is still my internist but she sure gave a dumb answer. When you get this diagnosis (multifocal AVN) your life is totally changed and I’ve had no time to seek someone smarter than her because I get so exhausted going to doctors. Nothing depresses me more than the American orthopedic community. I have not seen all the doctors in that field but the ones I’ve seen, except for this French doctor who I do pray helps me, are just not helping at least me. If others feel they have helped them, fine. I know young people are admitted into stem cells treatments. As I posted above, stem cells just do not work for everyone. But considering the enormity of avascular necrosis, in multiple joints imagine, there is no excuse for America not putting stem cells in joints it is doing core decompressions in. That is my humble opinion. It will not change except that sometimes the AVN is so extensive current stem cell methodologies may prohibit obtaining enough stem cells. I actually would have liked my stem cells to have been manipulated many fold but that isn’t done in France and I felt a trip to India daunting. It would be nice to have millions and millions of stem cells injected into my legs. But time is not on my side and my next project is my shoulder.
I have just began to notice that my knee has a bruise on the outside of it that has been tender and not began to fade or go away that has been there at least 2 weeks. I have AVN in my hips. Does anyone recommend I get my knees xrayed just to be cautious? And I was also wondering if anyone else has had bruising with AVN? I have not had any bruising with my hip, and the pain in my knee is different. I have been attributing the pain in my knee to me limping and straining when I am walking around not on my crutches like I need to be. Any advice would be appreciated. Thanks!
I never had any bruising with my AVN, but you can have AVN in multiple joints. If I were you, for peace of mind,I would get an MRI of your knee done to confirm that the disease hasn’t spread. An x-ray won’t show AVN in its early stages.
It could be very possible that your knees are tired from compensating for your hips and if the pain is different then that might be an indication that its due to just pure overuse. The pain I had in my knees was a burning feeling like there were hot rods running down my thighs to my knees. The pain was excruciating. I know this sounds weird but my knees also felt itchy. The pain was largely on both sides of the knee cap. The weight of even a sheet on my knees or thighs hurt.
Hi Mallory,
Please don’t take this the wrong way: I’m not giving you medical advice, simply giving you a possible explanation; you ought to ask your doctor who knows you. But here goes:
ON is a disease of the bone and while bones do bruise, they don’t leave a mark on the skin, unless it’s quite a whack. With the bruising you explain, it sounds to me that that might be a problem with circulation or clotting mechanisms. Is the bruising large or is the area much smaller with purple dots? A localized BIGGER bruise is often indicative that you got injured-but don’t remember it-not uncommon. But, the cause is sometimes known
Lots of tiny purple areas, petechiae, can be indicative of clotting disorders, autoimmune problems, any number of things. If it hangs on much more than a week not seeming to get better, let your primary doc know. Are your toes or knees cold? That’s a sign that you should see your doc MUCH sooner, but at least give them a call. Please be mindful of the fact that I don’t know your medical history and am probably mega miles away and am just shooting from the hip! Your doc knows you
I have a comment regarding stem cells and Dr. Thomas Einhorn and that is that i wrote to him at stage one of both hips and knees but could not get him interested in treating me with stem cells. I was 61 at the time. If you cannot get any American doctor interested in treating you and are at an early stage, you might want to consider Dr. Philippe Hernigou in France (Henri Mondor Hospital). My insurance would not cover stem cells anyway so I went there October 1, 2012 and had both hips injected with stem cells. The cost is approximately 1,600 euros per hospital stay (which at the time was a little over $8,000 but I only stayed 3 days not the 4 I paid for so they owe me back for one day I paid) and the surgeon’s fee is 3000 euros (at the time it was approximately $4,500). I am 63. God willing I will go back for my shoulder. It takes 3 months for stem cells to renew. After that God willing I will go for knees (everyone who viewed my multi infarct knees in America has said nothing can be done but this doctor is going to try). Stem cell results are of course not guaranted. Anyone can look up who this doctor is and how much work he has done regarding stem cells. I do see interesting things in other nations but at my age I just have to consider an easy path. One must stay in France about 2 weeks. A round trip is about $1,000 and I found hotel accommodations for slightly under $2,000. There were miscellaneous costs as well.
Joan, does dr. Hernigou have a website? How did you find him? I would be interested in posting about him on here, I’m also a member of a group of people with AVN in the UK and they might be interested in his information. Thanks for being an active contributor to my site!! I really appreciate it 🙂
Cassandra, I am a member of the AVN Support International site. In the spring a member posted she had read research and found his email address and all the specifics about her own trip to get stem cells in both hips. She posted she was going back this fall 2012. She never posted again. Because of my age I guess there was only one doctor in America who was talking to me about doing stem cells regarding my hips only (I have it also in a shoulder and severe multi infarcted multiple bones of both knees) and I actually felt it less expensive to go to France than use this single doctor in America because Dr. Hernigou does both hips in a single operation. The American doctor was going to do the hips one at a time. I also wanted to see this well known international doctor to see if anything could be done regarding my shoulder and my knees. He responded affirmative; however, with AVN there simply are no guarantees as you know. Anyone who wants more information about Dr. Hernigou should search the internet. I easily found all contact information. I also studied his articles. Nobody should go anywhere I believe without knowing something about what they are getting themselves into regarding stem cells. The body of medical literature supports my reading that Dr. Hernigou’s reputation is extremely advanced in knowledge and treatment of AVN. I post to help those who cannot get treatment in America and are as desperate as I to try stem cells. I could post contact information for him but I would rather readers do some research about him. I found out many people with avascular necrosis seem to chat on websites and know so little about this disease. Understandable because they are working but sad because treatment is so hard to come by for Americans with this condition.
When I first considered stem cells I communicated with the company that Dr. Hernigou had chosen for the process of spinning the stem cells collected from your body. During that meeting I was informed that Dr. Joseph Lane at the Hospital for Special Surgery in New York City had been trained by Dr. Hernigou and also used the same machine for processing the stem cells. For those of you considering stem cells I suggest contacting Dr. Lane as an alternative to traveling to France. Being disabled as a result of my ON diagnosis, I have Medicare. All costs were covered for the procedure. In my case I had the stem cells used for one knee and one ankle. Unfortunately, the stem cells did not change the condition of my ankle or knee. It has been a few years since this procedure was performed. As I recall, Dr. Hernigou’s published studies are available on the internet.
Don,
When I have time do you mind me posting on the Doctors section about Dr. Joseph Lane?
Don, thanks for posting this. It’s good info for those of us who don’t have the option of traveling to France. Unfortunately, stem cells would likely have helped my ankles much earlier on, but now that they’re collapsed, my options are limited. I think the lesson here is, the MINUTE you’re diagnosed with ON in ankles, act proactively. Don’t wait for collapse. Consult with Dr. Lane, Dr. Lamm, Dr. Haun.
I waited for a long time to see Dr. Lane. I finally got to see him December 2011 (was diagnosed with AVN April/May 2011) and he said he would not do stem cells in my hips because another doctor June 2011 had done core decompressions. Somebody here posted that they were in a similar situation and Dr. Lane did do stem cells on them. I was 62 when I saw him. I do wonder if perhaps my age influenced him to respond the way he responded. My insurance is accepted by his office yet does not cover stem cells. However, it might have covered some costs because it does cover core decompressions. He does hips one at a time, though. If cost is a consideration, perhaps going to France is possible for you. By my reading pub med, it seems clear to me at least that stem cells are more effective than having no stem cells if what I read is true. I’ll post regarding the outcome of my stem cells in the hips as time goes on.
To ON77: I think it would be great to post information about Dr. Joseph Lane. It does sound from Joan’s post that he is still performing the procedure. It also might be helpful to contact the manufacturer, Harvest Technology (the BMAC system for stem cell collecting and concentrating system) used by Dr. Hernigou and Dr. Lane as it was shown to be superior in it’s ability to spin the autologous stem cells collected to see if they have a list of those orthopedists currently performing the procedure. There is another system that was in use which had been developed by a doctor at the Cleveland Clinic and supposedly there is a difference in the spinning process that results in a higher concentration of the collected stem cells from the iliac crest area near the hips with the system used by Drs. Lane and Hernigou. It is important for readers to know that these stem cells are different from the ones which occupy so much of the current literature, publicity and controversy. There also has been more success with the adoption of autologous stem cell procedures with cardiac patients (again this may have changed since I was investigating the information some time ago). As I recall from the company, they said it was easier to get cardiac doctors to adopt their system to do the cardiac procedures than it was to get orthopedic doctors to perform the procedures the company was suggesting for the treatment of AVN/ON. The company did not speculate on the reason for this difference. If you read about the BMAC system on the internet I am quoted about this system (I was and still am a patient that did not receive any remuneration from Harvest).
Additionally, it is important as was indicated by Joan and Annie to seek medical advice or a consult for the stem cell procedure as early as possible to improve the chances of success. It has been several years since I read Dr. Hernigou’s published study and I believe he reported the most success with early onset AVN/ON and it was based on hips only. Dr. Lane agreed to the procedure for my case even though my lesions were older and I had had core decompressions in both the knee and ankle he inserted stem cells. I was surprised with the length of time it took to recover from the procedures (6-8 weeks and with PT). The care I received by Dr. Lane and the Hospital for Special Surgery was excellent. However, I did not receive any benefit from the procedures, which Dr. Lane thought might be the outcome.
Since then I have been advised by another specialist associated with Brown University Medical School and Hospital not to have anymore procedures due to the resulting weakening of the various bones from the holes created by this procedure and core decompressions I had had previously unless I was given explicit information about the likelihood of damage even if the procedure might provide substantial benefit. I recommend asking this question to all doctors who recommend any procedures, so that you are at least informed of this potential risk and damage should you be a candidate for joint replacements at a later date (again this applied to my knees and ankles only and not hips, which already have been totally replaced). If anyone has any questions please let me know. Don
One place early on after my diagnosis in April/May 2011 and after I saw a so called “AVN expert” doctor who did core decompressions (drilled tiny holes) in hips, leg bones comprising knees, and shoulder I wrote is Cleveland Clinic explicitly asking for stem cell treatment. I was 62 at the time. I received correspondence back not only that they could not help me but also I wrote again and one of their doctors had a doctor not with the Cleveland Clinic as I recall email me that stem cells are still experimental and I ought to get a hip replacement. I emailed him back that I had 5 joints involved not just a hip to be replaced. He replied that must be daunting. Again, perhaps it is my age at the time (past 60) because I had been told by some doctors they do not even do core decompressions on a person 50 or older. From a personal standpoint I am glad Dr. Hernigou in France gave me stem cells in my hips and I hope will put them in my shoulder and legs. The prospect of 5 joint replacements (I am now 63) is to say the least “daunting.” I’ve learned from seeing 14 orthopedists in 2 years and writing many places never to think any single specialist knows all there is to know about AVN. (I would have had stem cells not just holes drilled in my bones had I known about the procedure in the beginning but I did not do my homework which for every AVN diagnosed person is to read as much as you can about the disease and treatments offered).
On October 26, 2012 I posted about cost of treatment in France by Dr. Hernigou. When I came back to America October 10, 2012 I received a bill for 5,000 euros. I did not know if this was in addition to the hospital bill of $8,000 or what precisely it was. France does not itemize and it just said “surgery.” I found out it was an additional charge. I paid it yesterday. I never got an explanation for the hospital what precisely it was for.
I don’t regret getting stem cells there for my hips. I may go back. I did want others with AVN to have an understanding of the costs.
If the stem cells worked, the money was well spent. It they did not work, I’d be a bit steamed unless I wasn’t given any kind of guarantee that they’d work. However, either way, I’d be asking for an explanation of the bill. Had they told you that this would be an $8000 procedure and that would be the only charge? You say that you were charged 5,000 euros in addition; how much is 5,000 euros in USD? Annie
I don’t think you EVER ought to pay a bill that you weren’t entirely sure what it covered; even if they don’t itemize their bills. If they’re going to request 5,000 extra euros, I’d CALL for an explanation; that a is unless 5,000 euros is the equivalent of a telephone call to France.
Annie, when I first contacted Henri Mondor Hospital in the summer 2012 I did get emailed to me the cost of hospitalization which amounted to approximately $8,000 dollars. It was stated that there could be additional expenses billed to you. No, 5000 euros is not pocket change. It comes to about $6,500. I have been trying since November first 2012 to get the billing lady in the hospital (apparently the only one who does bills and she went away for 5 weeks!) to explain what the 5000 euros is for (is it an extra charge and for what?) because technically they owed me 1,660 euros for one day in the hospital that I paid for out of the approx $8000 but did not stay that day. i’ve tried with no success! She simply has not replied to any emails I have sent her. Unfortunately my AVN is “old”. I got it in February of 2011. I very much let American doctors’ pessimistic assessments (I saw 13) influence me into a state of hopelessness and yet my AVN was discovered at stage one. also so a so called “AVN expert” just did core decompressions of me at stage one by just drilling some holes, but putting nothing in the holes! No stem cells, nothing–total missed opportunity! I must move my AVN treatment along pronto before collapse. I have a modicum of hope these stem cells may work in my hips. Dr. Hernigou thought he could help with knees and shoulder lesion. My knees I’ve sent my MRI’s all over and the concensus of Americans is “hopeless.” I very much am considering going back to France and right away though it takes 3 months between surgeries for stem cells to renew themselves; that is, if Dr. Hernigou will have me. I must admit I got somewhat out of temper (to put it mildy) with this person in the billing office and still am if I paid that money in vain. She’s been back at her job since October 10th and just won’t reply! Saving my knees and shoulder are of great importance to me. I’m exploring the possibility of India, but that is from the viewpoint of multiplying osteoblasts which Dr. Hernigou does not do. I wonder with so much AVN in legs about this. It may be less expensive to go to India as well. Time is not on my side now. I’m at stage 2 with hips and hope to learn what stage knees and shoulder are at. Drilling holes in my bones did not stop the progression! Maybe in someone younger than their 60’s but why settle for drilling of holes? One either has faith/hope in stem cells or one doesn’t. I am absolutely convinced all my joints will collapse without stem cells. I do not have mild AVN.
Just a note on this, in case anyone is reading. I did not have any extra costs, so I am not sure this always happens, luckily. I am still waiting for the refund from the 4th night as well though. But, 1 yr later and it seems to have worked so I am pretty happy regardless.
I changed the name for you 🙂
Thank you, Cassandra.
Joan, at this lat hour of almost 2AM (and I’m ready to pack it in!), the first ting to catch my eye is:
” Drilling holes in my bones did not stop the progression”
A core decompression was never intended to cure ON or stop the progression; just intended to provide pain relief until something else, like a BMAC was available.. Anyone who told your that a CD was going to stop progression of ON was flat-out wrong. I’m not an ON expert, but think of it: Here you have an ON joint and you drill holes. How can the drilling of holes in to a bone, make it anything but less stable for a while and release the pain causing m gases and necrotic debris? Do you see a way that the drilling of the same holes can result in curing ON or reversing what the body has done to cause ON?
I only say this because you’re intelligent and it seems to em that someone handed you a line of bull, but because he had a white coat on,, he was believed before you reasoned make sense,
The idea, though it doesn’t work in many cases, is that if AVN is caused by intra-medullary pressure, relieving the pressure may stop or reverse the AVN. The stopping or reversing may not happen, but there seems to be pain relief. But doctors do, for this reason, explain it as a treatment for AVN not just pain relief.
Annie, I went from having okay heath to taking prednisone 3 weeks to finding out within months I had hips, knees, a shoulder with AVN. You are a nurse. I am a lay person who at 61 was trying to keep working. I saw a number of doctors about this diagnosis. No doctor laid it on the line that core decompression is to relief and go overseas for stem cells if you seek more. It was my misfortune to meet up with a doctor who implied he was an AVN expert (yes, I checked his background) and drilling hole in my bones had good percentage of “success.” He also talked me into meniscus cutting though that is not only useless surgery; it is known to be the 3rd leading cause of spontaneous necrosis of the knee and not recommended for older people with avascular necrosis. You say I’m intelligent. No, I don’t think anyone getting a diagnosis like this without a friend or relative in the medical field giving them sound advice is not going to do what I did: put my trust in this doctor. Of course after the holes were drilled (at stage 1) 3 months later he said I was stage 2. He also said core decompression was for “pain relief.” I don’t know if that was meant just for me as obviously the progression was rapid, and was because of age, or maybe for everybody that he believes that. Had I been told that, I know I’d have sought a better solution than this “AVN expert” offered. Frankly, I’m now of the opinion that most Americans are told the same thing: core decompression has a pretty good “success” rate and “success” is not defined for them. Intelligence has nothing to do with the emotions of such a diagnosis let alone systemic AVN.
I also challenge everyone to go into pub med or just google avascular necrosis treatments and read about “core decompressions” (actually that term is used for a variety of things: drilling holes, putting something into the holes like bone morphological protein, putting grafts into the holes) and read the statistics about “success” (which I did do) and you will think, as I did from the way most articles are phrased, that core decompression has a pretty good rate of “success” which most of us do not equate with just less pain but actually stopping or reversing the disease. It is only careful reading of a great many articles that leads one to conclude core decompressions are not all that successful whch is why stem cell clinical trials are finally being tried in America. Everyone who posts on forums posts their excitement about getting core decompressions with the same hope and enthusiasm I had. If one subscribes to a theory of “compartmental syndrome” it is even implied you will cause greater and more damage if you do NOT get core decompressions and who is going to do that to themselves? Cause myself even more harm and bone death by NOT having these hole when a doctor advises to do so? Those of you with medical backgrounds give those of us without medical backgrounds a great deal of assumptions that we are able to 2nd guess doctors. Most of us just want to put our faith in doctors. I did and lost the chance to get meaningful treatment of joints at stage one. Plus the core decompressions cause a great deal of insurance problems and other doctors then are often reluctant to go in there and give you the stem cells you need.
wanted to update everyone re stem cells treatment by Dr. Phillipe Hernigou in France. His fee is 3000 euros and a 4 day stay in the hospital was 6000 some euros. One must wait 3 months between stem cell surgeries. October 1, 2012 he withdrew stem cells from both my pelvic bones and inserted them in my hips. I was to stay 4 days in the hospital but he let me out after 3 days. I came back to USA and there was a perplexing bill of 5053 euros and I’ve been trying to get the billing lady in the hospital to explain was this for extra money necessary for hospital stay (things could happen that would increase the amount owed) or does this reflect the bill now that it is understood I only stayed 3 days in the hospital not 4 days. (France does not itemize bills). The question was finally answered that it is just reflecting a lesser amount I owed originally because I did not stay in the hospital one day. I am now making arrangements to go back to France and
get stem cells in knees. I just had exrays today and am hoping I’m still at stage 2. After that in the spring I’d go back to get my one shoulder done. Come January/February it is 2 years I have had AVN. I’m now 63. American doctors were not interested in my situation of 5 AVN joints. I wish I had gone elsewhere from America when first diagnosed at stage one. The treatment I got in America (some holes were drilled in the bones but stem cells were not put into the holes!) did not stop progression of the disease so to me it was a waste of time though the doctors make the argument it is to “releave” pressure in the bones. Maybe so but these old bones proceeded rapidly from stage one to stage 2. I just hope my knees and shoulders are not now stage 3.
My blog is on WordPress.
Dear Osteonecrosis77,
Thank you very much for your blog and especially for featuring Dr. Glueck. I want to see him! He has kindly replied to my email messages.
Please email me. I think we live near each other. Your comments re the UCSF doctor are so like my recent experience there and other places. I left a message last night for “your” doctor asking him to please read Dr. Glueck’s research. How and where might I get evaluated for (less severe) ON? Dr. G. refers me to oral surgeon McMahon in Indiana RE ONJ (jaw); I hope to see him…
Best healing wishes,
somadoc
Hi All
its really nice to see people sharing their exprience on AVN.
This is Sachin from India.
I am diagonsed with AVN ( its between stage-1 and stage-11) and under went Core decompression surgery on DEC 15 2012.
It was still into initial stages so thought of taking a call for surgery as this was the minor one.
The exact reason for this could not be acertained. The doctors has not given any gurantee on this surgery
It was told since it is into intial stages there are better chances of arresting this disease but cannot be cured.
Well this has changed my life style that is
1. I am not able to jog hence forth.( daily I used to jog for 12kms( 6 miles ))
2. Not to play any sports that would excert pressure on the hips( football,cricket, skipping).
I am 36 now and have been invovled in sports right from age of 8 years. For me sometimes
it seems the end of world, as sports was part of my life. To quit at once it’s nightmare……
Can any body please let me know what are the precautions I should be taking in future
and what would the sports I can persue going forward.
Your exp’ and advise can be great help for me.
Cheer’s
Sachin
Sachin,
I was a runner like you, it was also a big part of my life and now I am no longer able to run anymore. I have trouble walking a few blocks without a cane or walker, so running is definitely out. I swim now. It’s amazing, I love it and it puts no pressure on my joints. I know a lot of people with AVN in their hips manage to bike also. This, however, all depends on the level of pain you have. Did your doctor prescribe you physical therapy? Where is your disease located?
It’s very good you caught your disease in its early stages. I’m going to be 100% honest with you, core decompression does not have a very high success rate.
That being said, it’s not completely true that AVN can’t be ‘cured’. It all depends on why you got AVN, and if you have primary or secondary AVN. The disease has regressed in people who’s AVN was caused my genetic clotting disorders, this was after being on blood thinners for a certain period of time. I have AVN because of several clotting disorders and my disease has started to get better, but it is healing VERY slowly. IF I am blessed and it does heal completely it will still take a few years before I can function the way I did before I got AVN. If your bone does start to heal, reossification (reformation of new bone) takes years. Annie is right in saying that to some degree, depending on the severity of your AVN and if it progresses, AVN is going to be a part of your life. At least for now.
One of the most important things you need to find out is why you developed AVN in the first place?
Thank you for finding my blog and sharing your story. Please feel free to ask questions, vent about your concerns and worries. Stay strong and always demand answers from your doctors!
Cassandra
Sent from my iPad
Hi
Thanks for the reply.
I pray and hope things will go in your favour down the line and you will be back on jogging track.The disease is in the left hip which is advanced than right hip
which has just began( pre-initial stages). Well CD’s has been
done on both the hips. Yes they have adivsed physical therapy but I
think this would be only for post operation period. Next Week I would
be going for check up once again as this would complete one month after
operation. Right now there is no pain in both of hips, but sometimes I feel
some sensation in the left hip. This can be my mental block also. I have also
checked with one guy here, he has asked me to get Vit D3 and Vit B12 checked. If
there is deficinecy in this, generation of new bone would be diffcult. See if this info
can be useful to you. Can you please let me know Dr. Glueck mail id, so that even I can check
what are the test that has to be carried out.
Thanks & Regards
Sachin
Hi All Hope everybody here in this forum as doing fine and doing their best to come out of AVN. Thought of give any update regarding my treatement process for AVN stage-II. In December I had core-decompression for my left hip for AVN stage-II. I did have relief of pain for some time, but as the time passed by it increased on totally new area and the intensity was horrible than before. As Cassandra told this method do not have high sucess rate, and you were perfect. Last month I opted out another method of treatment know as Ayurvedic system of medicine. This is traditional medical system in India similar to allopathic system. The treatment process is non-surgical and is know as Panchkarma treatment. Its diffculto tell in detail what medicine’s they have used. But it was the herbs which they inject into to your intenstine through your rectum and you are suppose to hold this liquid for about 12 to 13 hrs and can passed out during stools.  And tell you its painless process. The treatment period would be around 10 to 16 days depending upon the grade of disease. The notion behind this is if your intestine is clean it helps in proper blood circulation and also it improves you immnue system.  So whats my condition today????? I have been releived of pain of about 90%, getting back to normal life, I make it point to walk for 5 miles as my workout routine, life has been without pain killers…..what’s more required????? I am suppose to take his treatment every three months in this year, which i do not mind as it can bring me back to what I was.
If any body interested, please let me know I can pass the contact number and email id of the doctor who is looking after this. I am his 14th patient on AVN, and all are doing fine after this process of treatment. There were guys who had lost hopes in life after core-decompression, stem cell therapy, but this process has given them a positive hope in life Cheer’s Sachin
SASHIN, I was athletic, did triathlons and was known by my family and friends as the string bean, as the one who was never home, always out busy I was. Then, came the diagnosis of lupus and within 6 years the diagnosis of ON.
What would I most recommend? With the longevity you have n front of you and what it soulds like you want out of, you expect out of life, I’ll throw a few thoughts out there In no order at all.
!) understand, and I mean REALLY understand that this disease may put a permanent crip n your life, and learn how to LIFE well with ON, instead of IN SPITE OF.
2) If you start experiencing twinges or pain in a joint, IMMEDIATELY see your doc, get it x-rayed and request an MRI of you doc. The doc needs to iKNOW, REALLY KNOW , that this is YOUR life and the best way for him to do this is for him to respect you. (So, respect his time, his tie, don’t be ‘the boy who cried wolf all the time.’
Thanks Anne.
Hey, it has been a while since I have updated you on my AVN…I earlier posted about having AVN in both hips, but only had the symptoms in my right hip since May. Well unfortunately I finally developed pain and symptoms in my other hip. My right hip is starting to collapse, so at 23 I have been visiting different doctors to find the right one to do an anterior approach hip replacement for my right hip. I also finally made it to NYC to get an appointment with Dr. Joseph Lane. He is going to for sure do a core decompression WITH stem cells in my left hip, but is waiting for me to get new MRIs done and sent to him before he will decide if he will even attempt to try anything for my right hip. He prescribed me a nasal spray called miacalcin, which is supposed to be some sort of calcium supplement that will increase my bone density to protect my hips from collapsing until I have surgery. I just had an “ah-ha moment” the other day and am 99% sure I know what caused my AVN, but am wondering if anyone else out there has been in the same kind of situation. I went to the doctor for a rash and sinus infection 2 years ago, and got several prescriptions for it and remember both of my hips hurting to the point that I called my mom crying in pain. We talked to a pharmacist and the doctor who prescribed the medicines and they said to quit taking it because it was an allergic reaction. The pain went away within a week or two, and I never thought that would be connected to my AVN when I started having hip pain exactly a year later. I called the doctor this week and asked them to tell me what medicine I was prescribed, and was told it was sterapred (prednisone) 6 day pack. I know long term use can cause AVN, but have not really heard of such short term use causing problems. Has anyone else had a similar experience? I just feel positive that has to be what caused my AVN.
Mallory,
Nice to hear from you!I’m so glad you went to see Dr. Joseph Lane. I have written about him and have heard so many great things about him. He really is a leading doctor in the field of stem cell research. There are other people who have commented on here who have been treated by him. Check peoples comments especially under ‘doctors’ and ‘your story’.
I’m not sure such a short course of prednisone would cause AVN. Dr. Glueck told me that a 20 day course of prednisone has caused AVN. I will ask him if he has treated any other patients with AVN who were on such a short course of steroids. Have you had your blood checked for clotting disorders? If not I really recommend you do so.
Keep me posted!! Good luck 🙂
I
I thought I’d post a brief update. On October 1, 2012 I had stem cells placed in both hips by Dr. Philippe Hernigou in Henri Mondor Hospital in France. I have had AVN for 2 years in 5 joints. I am stage 2. On January 9, 2013 I had stem cells injected into both knees. I now have one shoulder to have stem cell injections. I think it is too early to post the results. I do hope they work. My insurance does not cover stem cells and I did research to find the best doctor in the world and a good and fair and affordable price for me. I am 63 and I posted a longer version of my story above. I got the AVN from 3 weeks of prednisone but I also found out I do have clotting disorders. I will post if any of my joints collapse and how I am doing. I will obtain ex-rays in 3 months and know a little more to tell you. I should add I am American. American medicine did not meet my needs. Stem cells are not readily available and they are not affordable in America for many of us. Many of us have insurance that does not cover them.
I forgot to post contact information for anyone who simply cannot get stem cell treatment in America or afford it or for anyone who has been told by an American orthopedist, as I was, that “nothing can be done for your knees — too many lesions” etc.:
Pr Philippe HERNIGOU
Sce d’OrthopĂ©die et Traumatologie
HĂ´pital Henri Mondor
51 ave Mal de Lattre de Tassigny
94010 CRETEIL cedex
01.49.81.26.01
fax : 01.49.81.26.08
philippe.hernigou@hmn.aphp.fr
I think Dr. Hernigou should be listed in the Doctors’ section of this blog. I note that some of my comments regarding Dr. Lane of Hospital for Special Surgery are on that page. However, Dr. Lane did not treat my AVN. His position was my knees had too much AVN, my shoulder he did not treat, and my hips should have been treated with stem cells at the time another physician did core decompressions some months earlier. I was not happy that I was not treated by Dr. Lane as I waited three months for an appointment and his position did not make sense to me. I thought I made that clear in my original comments about Dr. Lane that he did not treat my AVN! Plus he thought my knees were not treatable! Dr.Hernigou treated the AVN with stem cells including the knees. He has not treated the shoulder.
Hi all, Diag bi-lateral AVN femoral heads stage Ic-IIa Feb 2012. Had a core decompression Left hip with Bone marrow reimplantation with Dr. Kelly Sept 2012 ( basically same procedure as Dr Einhorn.) Saw a pretty sgnificant pain reduction immediately which was great. Still haven’t done the right side because waiting on differential diagnosis through Dr. Glueck for clotting disorders. I live in Colorado and have been a patient of Dr. Centeno of the Regenxx clinic (some of u might have heard of) for other reasons besides AVN. He wanted to ds own procedure of stem cell implantation on me but unfortunately I couldn’t afford it, it was gonna be $6500.00. I went with Dr. Kelly AMD and have yet to see if the stem cells have worked…if any of u have questions for me please feel free. Especially about Dr. Centeno. I know him well as we are working to help me with a neck injury and severe migraines…
Hello,
I was diagnosed with AVN in both hips at the age of 22 after a car accident. The first doctor I went to see put the AVN on the back burner and told me it wasn’t that bad but he saw what he thought was a tear and wanted to fix that. When he went in to do the surgery he found out there wasnt a tear and the AVN was worse than he thought and not knowing a lot about AVN he didn’t do much to help me it only caused my hips to get worse. 6 months after my first surgery my left hip started to collapse so I found a AVN specialist at the University of Virginia and he did a core decompression with bone graph on both of my hips. When I went back to see him in January I was told my left hip has already progressed into the third stage and he will try to do all he can to hold me off from a hip replacement because of my age but it will have to happen sometime soon. I almost always hurt and get so upset becuse I can’t do things like I used to but I try the best I can.
Faith,
So the core decompression worked for your right hip, but not your left? I’ve read so many differing opinions on core decompression. Are you nearly at segmental collapse? Is there any way you can try stem cells or do the doctors expect you to wait until you need a replacement? So sorry.
It is always so unbelievable to me that being young in this case is a disadvantage because insurance companies don’t want to pay for multiple replacements in your lifetime. You have every right to feel frustrated, upset. Whatever feelings you have are completely justified.