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) 
The point of all my posts is one may not need “joint replacements” if one studies pubmed (do not just rely on forums like these though they are obviously useful) and seeks out newer alternative treatments such as bone grafts; stem cells; and so forth. Of course you must be in an earlier stage to have such treatments plus many times you have to have access to funds to pay for the treatments yourself because often insurance will not cover alternative newer joint preserving treatments. There are many fewer orthopedic surgeons willing to do research and often work with you to see to it that your insurance does cover the newer treatment. I have found in the past two years of participating in forums there are individuals who post to forums who perhaps have a little medical training (I have never read a doctor post on a forum however) such as a nursing degree, and so forth, and who just did not have access to these treatments early enough in the stage of their AVN to be useful to them. Alternatively, some of these posters sought such treatments and the doctors told them “had you come to me sooner I could have saved your joint.” I have even a personal experience with one poster who, although not a doctor, thinks that this poster with AVN knows the absolute right way a doctor should use “stem cells” (I belive she wants a scaffold for the stem cells to attach on to surgically implanted) even though most doctors using stem cells are not using the stem cells the way this non doctor wants them to use it! In the end we have human nature to contend with. Sometimes because a person could not save their own joint, they seem to be a strong advocate of “joint replacements” as opposed to the initial emphasis on “joint preservation.” This is human nature and occurs regardless of a person’s education, credentials, and background.
I have been focusing on “treatment” and “joint preservation” for over 2 1/2 half years now for my 5 joints with AVN. Does this mean I suggest “no joint replacements” for me or anyone else? No. My story of AVN is just to share what I am trying to do to “preserve my joints” as long as I can hold on to them. When the day comes I am in great pain and there is no alternative but for a joint replacement, I am certain I will strongly focus on that for myself. I do not even advocate others try what I have tried in four joints thus far: bone marrow aspirate concentrate (namely, stem cells) nor do I advocate where others should obtain such surgery (I went overseas as it was by my study least expensive). I simply share one individual’s experience (mine) plus now I am sharing a caution (which applies to anything I post myself) and that is it is human nature to want to be “right” about decisions one has made about their health.
A mere poster on a forum such as myself is one of many differing points of view. The owners of the sites and “moderators” have more sway with influencing desperate readers with AVN seeking answers. So one must always keep in mind the human element (of everyone including owners and moderators and other posters) to want to sway others to do what that person has done to be “right”. To me the story is not in as to what is the absolute “right way” to treat AVN. We do not have 100% successful AVN treatment. AVN has a variety of causes though its outcome untreated is largely predictable but even then with some exceptions.
I approach AVN with an “open mind” for myself and appreciate advice but in the end I am responsible for decisions I make as to my own health. I simply will not others “dictate” to me the “right course” and I will reiterate these forums usually do not have doctor participation. I doubt a doctor could advise/recommend a course of treatment in web forum setting. I for one have never taken one science or medical course of study. I just learn as I go what I can as best I can reading medical articles on the Internet available to one and all. I do share what happens to me because the “cure” for this disease seems a long ways away and if we do not keep in touch with one another about what each of us is trying in this large country, it will be a lifetime that will pass and opportunities lost to save a joint or joints.
First thanks for creating the website although too late for one of my hips and possibly the other one as well. A SUGGESTION – add a section on medicines. Do biofosphates help if given after or before core decompressions and if so which one(s) and does Forteo help if given after and is it bad to give a biophosphonate injection soon in time to giving Forteo? I am at a loss right now. My very smart rheumatologist is in total disagreement with the surgeon who did the core decompression. I probably have primary hyperparathyroidism which may have been a major factor to my now having osteoporosis and the surgeon wants me to take Forteo for two months two help possibly build bone in the femoral head where the bone has died, but the rheumotologist said I should not since Forteo is parathyroid and might have bad effect on my bone. I can’t figure out who to ask and can’t find research on use of the drugs in connection with core decompressions. Another suggestion but this time regarding finding your valuable website. When I googled osteonecrosis and avascular necrosis your site did not come up or certainly not in any of the first 5-10 pages of websites. I am serious when I say perhaps you could ask for a contribution of which 100% would go to your getting a reputable SEO person who would make sure your website shows up in the first two pages of websites when osteonecrosis or avascular necrosis are googled. On a personal note, I would love to share my story and the information I have collected — but you have to realize that many of us fear with good reason revealing who we are due to its impact on our ability to obtain work, insurance etc. – and it should be clear that no database is safe from hacking. I tried to sign up but some odd company’s homepage appeared. Please consider letting us share without having to make ourselves vulnerable. I will put in this email reply all that I can. I will see (with hope) if the doctor you and others regard so highly will review my tests (and tel me the additional tests I should have) to consider whether a blood “thinner” would help. Despite my attempts at research, I would up on a website which promotes joint replacement -Bonesmart – it is “managed” by a nurse who claims to be objective. Unfortunately I don’t agree with that moderator being benevolent. Note who the sponsors of the website are – all the companies which manufacture joint replacements. She does AVN readers a tremendous disservice in what is said about core decompression as a viable alternative to joint replacement if you are in Stage 1 or 2. However it is just a website with forums which as this website’s storyteller and moderator notes should always be considered as not being objective. The moderator for this website is also right about the value of PubMed although winding up in in a research report you trust is also haphazard. looking at footnotes to find the doctors would have been more valuable. So mine is a “cautionary tale” for readers who have luckily found this website before it is too late (before in stage 3). Greed seems to be the key motivator in our medical community – since few doctors do core decompression with stem cells they do not tell you the truth. The hospitals do not tell you what they should. If AVN is found in an MRI you should MAKE them do an x-ray that uses one of the standards staging of the disease then read the report for yourself – if you are in stage 2 you are still a candidate for core decompression with stem cells even if the doctor lies to you (as mine did stating my AVN was “intermediate”.) . Even if staging is not given, if the radiology report says that AVN has not been found in the x-ray, YOU ARE A CANDIDATE FOR CORE DECOMPRESSION with your own stem cells. So I now have a failed hip replacement in one hip and have just had a core decompression in the other hip with my own cells – hoping it is not too late although femoral head has a tiny bit of flattening — hoping that the surgeon who did it was being honest when said would not make difference (one of the people who wrote in this website who used Dr. Einhorn said Dr. Einhorn said the hip which had a tiny bit of flattening less likely to be saved than his other hip). If I new only 10 days to see him might have gone to him. I may now ask him to read the x-ray to see if I was told the truth and it was in Stage 2. Why you might ask? Because I sat for six months with a failed hip replacement being told it was just inflammation and I don’t want to have false hope with regard to the possibility of success with regard tot he core decompression in the other hip. I desperately hope that the radiologist did not lie regarding the staging and that the surgeon did not go ahead with it just for the fee knowing that it was unlikely to work. Seems like Dr. Einhorn is the doctor to go to if he uses the high level of concentration of stem cells that the doctor in France uses since research has stated this seems to be crucial for success. TO the moderator – my insurance company has been evasive with regard to coverage. I didscovered the code the surgeon will be using for billing and the insurance company siad that code is a “covered” code but I will wait ans see fi the company plays the “medical necessity” game, its latest way of trying to get out of covering procedures and tests (although the femoral ball always collapses if in stage 2 and do nothing so would be hard for insurance company to say not medically necessary – what would be? A joint replacement? The other alternative would be to claim experimental and investigative but if on their list of covered procedures going to be hard to claim that – will fight this time. FYI, AARP had excellent article in past on how to fight and people who do it for a living. To the moderator, you are very lucky that you found the French doctor. How different my life would be if I had been told about core decompression with stem cells a year ago, and had my stage 2 hip done and my stage 1 hip done – I might have been able to keep both hips forever. Back probably with a new position many months ago, with more savings left, and the ability to go on long walks and be active for many more years. On a different note, the Mayo Clinic is now doing a lot of core decompressions with stem cells. Make sure you find the right doctor through their Regenerative Medicine Center. The wrong doctor was recommended to me, I had to wait 2 1/2 months to see him, and he did not say anything about core decompression on the the hip that was still in stage one – another misstep on my unlucky road.
Hello, I am so happy to have found this blog and to be able to learn from other’s stories.
My story is that I started to have unexplained pain in my right knee that incapacitated me. After a series of wrong diagnoses (I’ll spare you) a sports doctor sent me to get an MRI which showed the osteonecrosis. I have no precondition I know of (never took steroids, had no accident, wasn’t involved in any high-impact sports, never drank or smoked) and it is only now on reading this blog that I learn that maybe a clotting disorder could be the cause. If there are genetic causes this could explain why my sister also has had osteonecrosis of the hip (she had a hip replacement and now is fine). Anyway, the sports doctor told me to use a cane, walk as little as possible, and avoid all weight-bearing activity for three months. I did so and was so happy to see on a check-up MRI that the osteonecrosis was receding. So, I started physical therapy and was feeling better and better and then suddenly while practising walking without the cane, I started having sharp pain again. My doctor sent me back to do another MRI and I had a NEW patch of osteonecrosis in a different part of my knee. I also put all this together with the fact that in the last four years, I have had two other cases of unexplained bone problems, in my left knee and left foot.
So I’m off for another bout of “staying off it.” The sports doctor has the virtue of being willing to admit he doesn’t know what’s going on, why “I keep doing this.”
I am a North American living in France. After reading this blog I am thinking of consulting with Doctor Hernigou. And trying to get tested for clotting disorders.
Question: am I right that stem cell transplants and all that, it’s only for younger people? I am 59.
Question: my doctor says I shouldn’t consider joint replacement surgery because (1) my knees can heal as if proved by the fact that the first occurrence of the AVN did heal, and (2) since I seem to be suffering from multiple osteonecrosis in several sites, it wouldn’t solve the problem to operate. Any comments from any of you?
Question: somewhere on this site you wrote that estrogen is bad for people with clotting disorders, I went through fertility treatments, could that be linked to this?
In any case, I am on working from home (they call it “teletravail” here in France) and trying to walk only a little and with the cane so the bone can heal. I would love to be in touch with others with whom I can share thoughts and ideas. Also, if I do manage again to do what’s necessary for this new patch of necrosis to heal, the challenge will be not to race out and try too quickly to do too much.
All my best to all of you, I would love to be in touch.
Hannah D. T.
That’s correct, most of the forums don’t have physician moderators because physicians need to be very careful (as do nurses). LEGALLY about dispensing medical advice. There’s a fine line between the statement of “Take one Vicodin every 6 hours” and “does Vicodin help you pain?”
The physician and nurse practice acts (I’m guessing physician practices acts are similar to nursing). The mere thought giving medical or nursing care, never having seen the patient does more than border on the irresponsible.
Joan, “The owners of the sites and “moderators” have more sway with influencing desperate readers with AVN seeking answers.” With the execption of Cassandra, I don’t know of site owners who visit the sites. The ‘moderators’ do just that They facilitate discussion to their best ability and often that means taking the hand of the person who was just diagnosed, and letting hime know that the world doesn’t need to end and tomorrow is another day.hat i
There are times when we’ve all pitched in as moderators and given our personal story to see if the newcomer can latch on to it and make sense of it. But, by no means are any of the moderators at other forums giving advice (or at least they shouldn’t be) other than that based on their license. Physicians try to enter the forums and peddle their stuff, but they”re weeded out quickly enough. They fly low, only to come back and try to ‘repitch’ under a different name.
That is definitely against the terms of service at this forum and against the terms of agreement st most forums. I’d imagine that Cassandra could get in mighty deep water if she said that “‘x’ doctor will be here tonight to dicuss all you need to know about curing your osteonecrosis. He has developed something that will cure the uncuttable.” At least as of now, we know ON to be incurable; treatable, yes. Curable, no Friends, always? For sure, Annie!
None of my comments concerned Cassandra, Anne. As for a curable AVN, well, I have read some people had MRI’s showing AVN, got some treatments of some sort, and the next set of MRI’s did not show any AVN. That seems to be a cure but I’m a non medical person. Since I do seem to be an advocate of “stem cells” I’m posting this article I read today as it talks about embryonic stem cells causing “tumors.” I of course did not have embryonic stem cells injected into me but rather my own stem cells removed from my pelvic bone and inserted into the hips bones and knee bones. However, one American doctor in June said to me “you ruined your body with stem cells.” I am always at a loss for words when a person is rude and this man was very rude so I didn’t get a chance to say in what way is it ruined? Perhaps he meant risk of tumors? I can only speculate. At my age this is not my concern with five joints with AVN all but one weight bearing (hips, knees, one shoulder). But a young person or anybody should know all the facts. Here is my contribution to the continuing knowledge I hope we all are gaining.
http://www.naturalnews.com/041522_stem_cells_urine_tooth_regeneration.html
What about physicians with osteonecrosis? I’m a Family Physician and was diagnosed with AVN in March,2013.
JoAnn, that would have left me for a loss of words, too. Unbelievable!
can you explain how come you missed it
Saw the foot/ankle specialist on Wednesday; drum roll, drum roll, HE CAN DO THE SURGERY! In Dec or so, I’ll uvdergo ab ankle replacemernt using a tehnique that he unvented.
Non-weight bearing for six weeks and i’ll need to ne in a rehab institute for 6 weeks, but he can help!! Booked until January 2014, they put me on a waiting list and away from home anound two months…
His name is Dr David Hahn and Dr Kellyay have another foot-ankle guy. I saw Dr Hahn and all he was able to offer ( though I was VERY impressed-bedside manner and inyelligence) was a fusion . I kept looking and found dr reach, Clamton, Haddad and D’Orio (Duke)
When I brought up my feet and hands being really cold with my Doctor he just said hmm that’s not good.
Do u have any auto immune problems or this SOUNDs like it could be Raynaud’a- an intermittent hot/cold feeling and color change when u r neither hot OR cold. BUT i mega miles away and can’t diagnose. Talk to your doc who KNOsWs you and can run appropriate tests
I don’t have a history of Raynaud’s but that’s what I’m beginning to wonder about,too.
Hi,all. I’m Tracy. I have made a few replies but haven’t told my story. Still recuperating from my surgery a week ago so it takes a lot of energy.
Here’s what happened to me, as far as I can tell. I’m a Family practice physician, 48 years old. Im also retired Army, and broke my neck at C-7 in 2001, although i do fairly well from it, with residual neck pain.
In 2007, I had a series of epidural injections for neck pain. I’m not sure if the doctor used an abnormal amount of steroids for the injections or what, but I had some very unusual reactions, not like any that I’ve seen in my patients who’ve had similar treatments. First, I got a Moon-face, Cushingoid symptoms of high blood pressure and high glucose. Then, about two weeks after the second injection, I got a strange necrotizing fasciitis of my chest, front of my neck and lower face, which put me in the hospital and on IV antibiotics. I was placed on a huge dose of steroids because my airway was starting to be compromised on the second morning from swelling and they were concerned that they would have to intubated me.
Right after discharge, I developed terrible joint pianos, in knees, ankles, I think maybe elbows and wrists but I can’t remember for sure. I was on a huge amount of morphine for a month or two and at night, I would roll around on the floor in pain. The only thing anybody could come up with is maybe I had a toxic synovitis or something from the infection.
This gradually went away and life went back to normal.
About 5 years ago, I remember having some knee pain after doing a bunch of stairs and walking on a trip. I thought about seeing an orthopedist for an MRI but it seemed to come and go so I never got around to it.
Three years ago,I was worked up for some sort of arthritis because I had off and on pain in my joints but nothing was found by the rheumatologist at the VA. Of course, this was only X-rays and bloodwork so no surprise,there.
This March, I started to do a stairmaster to prepare for a SCUBa trip. I’m a pretty serious diver but had gotten out of shape this winter,with my job,etc. So, on the stairmaster and after a couple of weeks, I can hardly do a stair because of knee pain in both knees. I go scuba diving and developed terrible knee pain that week. The week involved a lot of stairs to our third floor hotel room, lots of hiking steep hills with heavy gear and hiking the stairs at the dive park with dive gear on my back.
I had one dive where I got thrashed around by the surf and thought I may have injured myself on the rocks on my exit. I also had a dive where there was a question of coming up slightly fast from depth from a deep ( 130 foot dive, more on that later).
We ended the trip a day early because I couldn’t bend down due to knee pain. The drive home from CA was horrible, it felt like my bones were going to break from the road bumps.
I hurt for several days, especially my left knee and finally had a doctor at work write a prescription for an MRI. I was shocked when the findings of severe osteonecrosis came back.
Talked to the radiologist about the week before and he thought there was a possibility it was Caisson’s or dysbaric osteonecrosis, although I was having a really hard time finding anything in the literature about DON occurring from a single or just a few recreational or low-level technical dives. It’s usually caused by years of technical or commercial diving.
Nevertheless, I went for HBO treatment. After one chamber treatment, I had no improvement so the chamber doctor discharged me. He felt, after 10 days, that if I’d had decompression illness, that I was not going to have much improvement.
Looking back, my diving may have triggered a coagulation pathway, especially when I discussed this with Dr.Glueck. It was cold water and on the edge of being over the decompression limit. I think it just stirred up the osteonecrosis that had already started years ago.
Anyway, I am now to the point of a wheelchair. Not working since June. I had my first core decompression/stem cells with Dr. Kelly last week, thank goodness I found her from this website! I had gone to two doctors in the Phoenix area. One knew nothing about AVN and told me this, the next wanted to do an o,d fashioned,large core decompression without stem cells, 12 weeks or more total non-weight bearing. I actually got lucky, because I was going to go with her, when she suddenly told me that she was moving to DC. I wasn’t about to have surgery with her on one knee when she was moving the following week! This brought me to this website and I found Dr.Kelly.
Hope to have the left knee, which is actually worse,done in 4-6 weeks.
One thing I wasn’t prepared for. The pain of this surgery has been horrific!
Also, my feet are getting colder and colder. I wear socks in our 77 degree house and my feet are like ice cubes. I just sent an email to Dr.Kelly to ask her about it.
Oh, I’m starting on the lovenox as soon as I can get a prescription from my doctor next week. I had anticardiolipin antibodies and one other risk factor.
My pain doctor has written for Forteo. I’m going to ask my PCP about trying Actonel or Fosamax, although I may not tolerate it, with severe reflux and gastritis.
Hello Tracy,
My Name is Ivan. I too have pain or cold and hot toes after a surgery. With all that continues with my foot my doctor diagnosed me with RSD. Sometimes it’s very painful but from everything I’ve read I have a mild case. My circulation in my foot isn’t good either, usually I have a cold leg from the knee down. Just thought I’d ask if your doctor said anything about RSD?
Hi all,
I have not written in a while but I just read a comment from Tracy and I think I should update everyone on my story. Tracy, thank you for your kind words and your advise. I suffered a miscarriage a little over a month ago. I was about 12 weeks pregnant at the time. The Dr.’s gave me the normal speech that 25% of pregnancies end in a miscarriage and that it had nothing to do with my AVN but I can’t help but think that it did. I am already blessed with 2 beautiful children and I have never had trouble with a pregnancy before. Granted, I am much older now (my youngest is almost 11) but I don’t think age had anything to do with it either.
I have not been tested for (nor had I ever even heard of) anticardiolipin antibodies. Was I supposed to be tested for coagulation disorders? Is this something that I am at risk for because of my AVN? I see my dr. in a few weeks so I will be sure to ask all these questions. I’m sure it will be time for another MRI so it will be interesting to see if anything has changed with my hip. I have not had any tests since the beginning of the year.
One thing that was really strange (and extremely interesting) to me was that I was in almost no pain in my hip while I was pregnant. Usually I am in pain all the time. Sometimes it is worse than others but I am never pain free. During the pregnancy, I can honestly say I was almost pain free. About a week before my second dr.’s appointment, I mentioned to my fiance that the pain was coming back in my hip. We both dismissed it and said that maybe I was just walking too much or because I had gained a little weight. About a week later we got an ultrasound and there was no heartbeat. According to the size, the doctor figured I lost the baby about a week prior. The pain has now gone back to where it was before I got pregnant. I don’t know if anyone has experienced anything like this or has any thoughts on why this would happen.
Anyways, I will update everyone after my next doctors appointment. Hopefully we will get some good news!
Alia, coagulation disorders can remain unseen all the time, but raise their heads and cause symptoms during pregnancy: THE OPERATIVE Word here, IS ‘CAN.” I do know that lupus patient have a greater chance of miscarriages because of something called ANTiPHOSPHOLIPID SYNDROME and miscarriages have resulted from that.
Your OB must be used to people voicing concerns during their pregnancies, such a special time, so please tell her your concerns.
Thank you Anne. I will talk to my doctors about it and get checked as soon as possible. It sounds like its possible I have something else going on.
You mentionanticardiolipin abx; d yu have any autoimmune prooblems? Ass you know anticardiolipinabxare common-or notunhard of i lupus and SLE can cause antipholopholipid abx and morecoagulopathies, resulting in the clots which can result in ON.
zthr docs don’t know what caued my ON. Was it the high dose solumedrol, the antipholsophlipid syndrom (APS), the factor V or some other risk factor? So many potental causes, but there’s no way to know for sure I’m told. And, to be quite frank, I’mnot so sure that if SLE were the cause, if it wuld change.
I don’t know. I’m beginning to think I may have lupus but I don’t meet all the criteria. I’m having a lot of weird joint pains and the cold feet.
I was given the steroids first for neck pain, then I had an infection from the steroid injections and I was having airway compromise,so I got a whole bunch more steroids.
I also have had a chronic hip bursitis/synovitis for 20 years and have had some injections.
I meet some of the lupus criteria but not all. I have terribly dry mouth. May have had a myocarditis a few years ago. I was once mildly positive for ANA but I don’t know if they did a complete test when I saw the rheumatologist a few years ago with all the joint pains.
Right now, I’m having odd little pains, thumb,wrist,elbow.Plus very dry mouth and eyes. Feet are cold as ice.
I was once worked up for immunodeficiency and I did have an immunodeficiency for some sort of immunoglobulin. I was going through a really stressful time at work and never followed up with that doctor.
I have been better since than so I think it could have been the stress causing my illnesses. However,I do still get colds and sinus infections quite easily. But,I have asthma,so it could be the asthma. I also went through a 20 year abusive marriage with PTSD and I had an unbelievable amount of stress,with that marriage, medical school, residency, the military and all the life stuff that went with it. I believe that PTSD lowers the immune system, at least while its active. Mine is now so much better.
For Alia-get tested for the anticardiolipin before getting pregnant again. I’m so sorry about the miscarriage. Talk to Dr.Gleuck. He will help you with how to treat it if you are positive and get pregnant again,as it will need to be treated during pregnancy.
Anne-I suspect I already had the ON, since my knees were hurting before I dived that week. Not to say my 20 years of diving hasn’t done something but for most of my dive career,until recently, it’s been pretty recreational diving.
That week of diving my have started some sort of clotting cascade and it certainly set me on the path to find Dr.Gleuck,because he was cited in some of the articles that I found. But,I think there must have been some underlying damage already, probably from the huge dose of steroids that I had in 2007, and perhaps the other doses that I’ve had for asthma and other reasons.
The good thing is that now I know about the anticardiolipin and I’m going to get the lovenox treatment. I hope between that and the stem cells that it will help.
I’d be okay if I need knee replacements but I really hope that the lovenox will help my ankles, the small spots are already a little improved,with no treatment whatsoever ,except for a few shallow dives in my pool, which I think may have given my joints some high oxygen.
My elbow was also really hurting and the pain went away after I dived to the bottom of my pool for 20 minutes several days in a row.
I wish that I could try the HBO treatment, I really think that it could help, but I don’t think that Tricare would approve it.
Maybe, if we happen to move next year to a town with a Naval Treatment Facility with a Hyberbaric Chamber, I might be able to talk somebody into it. We are moving next year but we don’t know where,yet. A couple of options include Oregon ( close to Bremerton Naval Base) and Honolulu ( with Military treatment dive chambers) so, that could be a possibility. Also, San Antonio, which I believe has a chamber for military use, although I’m not sure, since there isn’t a Naval Base there.
But, that’s a possibility for next year, just throwing that out there.
Tracy, I’m not tying to PUSH u into a diagnosis, but it sounds like SS w/ MCTD
I’ll get a rheumatology consult and see. I’ve always felt I had something, maybe the MCTD, mild Reynaud’s, the SS makes sense,as I’ve had some odd episodes of conjunctivitis over the past few years,with no good reason.
Until I moved to AZ, I always got these painful bumps on my toes,look like dyshydrotic eczema,except they were painful. I had one dermatologist say they reminded him of chilblains. Nobody ever brought up the fact that my feet were always abnormally cold. Now, when its nearly 80 in the house, they are like ice and its been much more obvious since the AVN started. I suspect its either something to do with the AVN or Reynaud’s. weird that my hands aren’t effected.
With SS, do you always get dry vagina or only sometimes?
You know,I say my hands aren’t effected but as I write this,its 79 degrees and my hands are almost blue with cold. I guess my hands are cold? At night,my husband will be roasting hot and my hands and feet will be icy cold.
I started on the stationary bike yesterday. Did three short sessions, 5 minutes each. I had a lot of muscle pain during the night but less joint pain.
Interesting development-my feet are less cold!
My feet and my hands are always cold too. No matter what temperature it is. One doctor mentions Raynauds phenomenon, but another dismissed it. I think it’s because of my clotting disorders combined with my poor circulation. When I swim, or do the bike now (I can do it for 10 mins now at no resistance) I notice an increase in the temperature of my extremities.
I had the same issue with my feet too. I started on the stationary bike because I was worried my muscles would atrophy if I didn’t do something. I found that it really helped with my feet (I guess just te increase in circulation) and the pain in my joints decreased significantly. I defineltly felt it in my muscles but that’s a “good pain” and went away as I got stronger. I’ve gone through times where I get lazy and don’t do the bike and the pain gets worse. I would keep up the bike as much as you can, I really think it helps!
I started the bike three days ago, with the approval of my surgeon. Feet are still cold but slightly better.
I started lovenox last night, really have high hopes for this, although its harder than heck for me to get. Don’t even want to go into how I’ve managed to get it, I do have a call in to my VA PCap with the hopes that she will be willing to prescribe it. Then it will also be no-cost. With Tricare, I can only get 20 days at a time because it exceeds the maximum monthly precription amount, which I’ve never even heard of until now.
I can finally start swimming today, as my surgical wounds are healed. Really looking forward to swimming! I’ll build up to 30 minutes in our pool, then start going to the heated, city lap pool in a week or two.
Next surgery is set for September 25.
Anybody tried Forteo? I just picked up the prescription. I’m interested in trying it. I had a low serum calcium on my last blood test so hoping that it might help.
I started the lovenox. Still waiting to start the Forteo, I want to talk to Dr.Kelly and make sure she’s okay with it.
I thought that my ice cold feet had warmed up with bike riding but they are icy cold today and the house is nearly 80 degrees.
I talk to my VA nurse practitioner today about a rheumatology referral and also about getting the lovenox from the VA.
Hope everybody else is doing well. My surgery on the left knee is scheduled for Sept 25.
Lovenox-Improvement already?!!
Just wanted to know if anybody else has had remarkable pain relief on lovenox? I’ve been on it now for about four days. My ankles are noticeably less swollen and painful. Also, my elbow, which had a negative MRI but which started to hurt at the same time as this recent increase in AVN pain of my knees and ankles, has stopped hurting almost completely.
I’m really psyched about this! I had some improvement in my elbow from experimenting with shallow scuba dives in my swimming pool, as well as applying topical nitro ointment, which is part of why I believe it was in the earliest,yet non-detectable stages of AVN, perhaps brought about by my deep scuba dives in March.
My ankle swelling is nearly normal and the pain is almost gone. Both ankles showed necrosis, on two MRIs, done in April and July of this year, with slight improvement in July,although the symptoms had actually become worse.
If I could get resolution of everything but my knees with the lovenox, and get help with my surgery ( core decompression/stem cells with Dr.Kelly) I will be thrilled.
I still believe that I had the start of AVN back when I was treated with steroids in 2007, along with some Medrol dose paks for asthma in the past few years, but something happened the
When I went scuba diving to cause a huge cascade, perhaps I got a little but of decompression illness or something. Whatever it was, things went to pieces pretty rapidly. Thankfully,Dr.Gleuck and Dr.Kelly both believe that I can dive again, I just have to be extra conservative with my decompression profiles. They even believe that I can continue with my dream to cave dive and technical dive, assuming that I’m very careful and decompress with oxygen at the end of each deep dive.
I’m finally starting to see the light at the end of the tunnel, after many very dark months!
Hey everyone. It has been a few months since I posted here. Here’s just an update, a good news update. I was dx bilateral AVN femoral heads stage Ic right hip stage IIa left hip by MRI in march of 2012. I had left CD with stem cells Sept 2012 Dr. Kelly. I had Right CD with stem cells in April 2013….I had another MRI last week. According to radiologist report in which he did a corison from my first MRI. My left hip is unchanged (successful surgery) and my right hip has improved on the order of about 25%. I guess core decompressions with stem cells to work. We will see what the future holds but I wanted to share some positive news with my fellow AVN peeps. Keep hope always ! And keep informed !
James,
That’s wonderful! Thank you for sharing your great news with us.
I can’t speak from experience because I didn’t have stem cells, but it’s encouraging to hear that you have had improvement. There is hope out there!!! Let us know how your recovery progresses. Hopefully you will see more improvement in time. Either way the improvement you have seen now is great and a good sign.
Take Care, Cassandra
Thanks so much Cassandra. It’s a tough road for all of us, and maybe a never ending road because there is no cure. But small victories are great. I am very much considering the regenexx procedure to have more stem cells introduced to my hips and I will share with you all the updates with that process…
Thanks again for the support! Keep fighting! Always!
I wanted to embed a you tube video from the Mayo Clinic but was not able to do so due to lack of knowledge of how to do so on my part. However, you can readily find this video that discusses a minimally invasive procedure using your own stem cells obtained from your pelvic bones and in the same operation places the stem cells into the hip/s that have avascular necrosis. The doctor states in the video that at stages 1 and 2 using this “new procedure” in the USA (she explains it has been used for years in Europe) that we can save the hip from needing a hip replacement 80 to 90% of the time.
Published on Jun 5, 2013 The title is “Avascular Necrosis and Minimally Invasive procedure using stem cells.” The video is narrated by
Courtney E. Sherman, M.D., orthopedic surgeon at Mayo Clinic, discusses what avascular necrosis is, how to treat it, the various stages and a new minimally invasive procedure using stem cells. She does also mention visiting the Mayo Clinic’s website for information.
Are they doing this procedure at all the Mayo Clinics? Too bad the Mayo doesn’t take many insurance plans. I live right by the Mayo in Scottsdale and my mother retired from there,works there as a contractor now but I’m not eligible to go there because they don’t take Tricare. They just opened a huge stem cell research lab at the Scottsdale facility,too!
Hi I am having the “Hernigou Procedure” done on Dec, 4 2013. Due to my fall on a cracked sidewalk. When I fractured my hip.At that time I had a rod & pins surgery. After all of these months I find out the bone did not heal or grow. My orth surgeon recommended for me to have this done. He is one of the few in the United States to do it.. Yes..I am terrified..but I want to be able to walk again..without a walker..& have at least less pain or even NO pain daily as I have now. Also he is thinking of following this procedure.with FORTEO ..Has anyone used this med to build bone??Anyone have the Hernigou procedure done and any results on it???. Would appreciate any info on this.Thanks waiting to hear back from someone out there [ I was also told that it would take 3-4 months after procedure to see if it is working]
Hi.. Happy New Year..thought I should send a note.. Well I did have the Hernigou done on Dec.4. Dr. said it went well. as far as the surgery end of it. I had a lot of swelling of my thigh for the first 2 weeks after it..& pain !! I am still on pain meds. but I am a lot more mobile now. I even take a few steps in my apt. without my walker YEAH!! But with a big limp. Dr said to soon to start P/T have to wait on that. The swelling is gone now.. It was expected to happen while the “cells” do their thing Only issue I have not is whether to start the “FORTEO” since I have other medical conditions..and the drug scares me..Anyone using Forteo?? please let me know.
Also as I said..I will NOT REALLY KNOW IF THERE IS ANY BONE GROWTH TILL SOME MONTHS FROM NOW.
Hii joandogs..Thanks for posting this video..I watched it & it sure did explain the >>” Hernigou Procedure” very well..even though It never mentioned the name of the procedure.. I am having it done in Dec 2013.. I will be happy to let you know how my journey goes with this. This avn was due to me falling &. fracturing my hip and I would believe also to having osteoporosis & I have been on predinisone 10 mg daily for my crohns disease for many yrs.* FYI.. I am having procedure done at a major New York City Hospital.
Hi Just a quick note to let all of U know..that the Hernigou Procedure so far has been going very well for me..I had it done Dec 4 2013 & Dr just told me last week..That the bone is growing..!!! 27.–% which he said was very good at this time. my pain is much less now & I am about to start physical therapy in very near future.. I would love to hear back from another person that underwent this procedure..still need walker to walk..but I can take some steps at home w/o it..but i have a limp..hope that is not permanent?? I am extremely pleased at this time..!! 🙂
Which doctor did you see in NYC. My husband is looking for a surgeon and we are having difficulty finding one that will do the Hernigou procedure.
When I talked to Mayos in early 2013, they wanted to put my son on a treadmill for a stress test. He had already been diagnosed with hip AVN, was on crutches, in pain, numb, vasculitis etc. Seriously, a treadmill????
My contact with them was one of the most shocking experiences in all the institutions I have dealt with in the last 3 years.
To hear a few months ago they were doing BMAC in absolutely shocking. I even had a doctor who was trying to help me figure out where to take my son and he could not see where Mayos was really doing any AVN related work of significance. Seemed like they were not even on the AVN map. I kept trying to find out if they offered any AVN treatments and it was a dead end.
So rolling forward to see they may be acting like they brought BMAC to the US is ridiculous!
I wonder how you could avoid the diagnostics team nightmare. I could not negotiate with them, could not get different diagnostics team…..so I guess we would have to get a treadmill test on crutches to comply with Mayos?!
Guess I should have reported whoever the two people were who included the director of incoming diagnostics for Mayos. I never took my son to Mayos, but maybe I should have. There has to be a way to get all the conventional and genetic testing in a week and not spend the whole year waiting for appts and tests. Wouldn’t that be somewhere like Mayos?
Ok, so I posted this in a different section of this blog that I found during a search on AVN. After looking through the site a bit, I noticed that this section looks a bit more active. Forgive the double posting but….
Hello everyone. I am glad to have found a discussion group on AVN. So… Here is my story. I was diagnosed with AVN in both knees about a month ago. I am 32 years old. My orthopedic Dr. told me it was caused by steroids. Not growth steroids… I’m a rather thin guy. lol. It actually all started back in 1998 when I had terrible pains in my stomach. To make a long story short, I was diagnosed with Crohn’s disease at age 18. At first, they thought my appendix was rupturing and rushed me into surgery for that, only to find out the real cause of the pains once they opened me up. The first thing they did was put me on huge dosages of steroids in order to control the inflammation going on in my intestine. About a week later, I was in surgery again and they chopped out about 3 feet of my intestine. I have dealt with that disease almost half my life now. It is an auto-immune disorder. There were times of flair ups when they would put me back on then off of Prednisone. I was also on Remicaide treatments (an immune-suppressant) for about five years.
Now, going back to the AVN… I started noticing pains in my right knee about three months ago. It would hurt, then stop, then hurt, then stop… I figured it was just a sprain or something and would heal. Well, it kept getting worse and worse so I went to an ortho to have it looked at. I have actually seen two ortho’s for it. The first guy ordered an MRI and said it looked like something was wrong with it, but said he really wasn’t sure what to do about it. I don’t think he had much experience with this type of issue. So I went to another for a second opinion and the second ortho knew right off the bat what was wrong. He did another set of X-rays and I brought my MRI to him to look at it. That’s when I found out what avascular necrosis is. He showed me the X-rays of my knees, both of them looking the same. They looked like cracked glass! Then he told me the MRI of my right knee showed clear cut signs of two spots in my bone that were completely dead.. He did say that it was in some early stages of the disease but didn’t elaborate on what stage. I noticed someones reply referring to 5 stages of the disease and would like more info on those stages. The only thing the doctor has done so far is to give me a six week prescription for Fosamax and told me after I use all those doses, to go see him again…. Other than that, I really do not know what to expect from this disease. Dead bones! It all sounds so scary and confusing. I have already been through so much with my Crohn’s disease and this is NOT what I wanted to hear at age 32!!! Any and all advice or information would be greatly appreciated.
Thank you to the moderator of this website for giving me a place to vent and seek out more information. Bless you all!
I would just like to share my story dealing with AVN I was diagnosed back in 2003 with bilateral AVN in my hips.Fast forward several years of enduring in pain and finally I had both hips replaced after core decompression failed. After several years the hip replacements failed and they had to be revised. For a few years after rehab I felt fine then it was all down hill from there. Not long after the hip revisions I had a problem with my ankle. I tore a ligament by just standing up? But that during a MRI it uncovered AVN in my ankle and lower leg. During this time I had a lot of shoulder pain which I assumed it was torn rotator cuffs. My Doctor told me wait until I was off crutches and we would check it out further. I don’t know about most of you but I knew what that deep down bone pain was. I did have badly torn rotator cuffs on both sides but also I have AVN in both shoulders. The first should has been repaired and the AVN had not progressed to the point were it needed to be addressed yet. Next surgery is coming in a few months and we will see what that brings. I also have the same kind of pain in my knees my other ankle elbows and wrist. I guess what I would like to hear is has anyone heard of someone having it all over like this or just knees and hips which is what I usually hear?
Jeff,
I know other AVN sufferers who have the disease in multiple joints. Not just their knees and hips. In their cases it seemed like it was caused by steroids that they had taken for one reason or another. Does your doctor know why you developed AVN? I’m glad you found this site. I hope it will be helpful to talk to others who know how you feel.
Cassandra
Hi Cassandra
I have been posting comments on the blog and trying to get help. I have not received any replies as yet. I can see my comments on the bog with a tag line “awaiting moderation”. Is there anything I am doing wrong ? Can you please help ?
They are not sure the only think that I can think of is I am a recovered alcoholic I know that can be a cause but I have been sober for over 7 years now and never really took steroids only some cortisone shots in my shoulders during diagnosis of that pain. They have stopped any type of steroid use for me now. I was told when they first found it that a lot of times it is idiopathic So I am not really sure.The only thing I know is I am in constant pan and I am tired of surgery eight of them in the last several years. The depression gets worse all the time because you never feel like you will get better Most people including my wife do not under stand the pain you are in because its not like anything they can physically see.They definitely don’t get the depression unless they have ever experienced it! It is hard to deal with but you just have to keep going forward!
The horror here about reading this is the level of incompetence by the physicians. AVN presenting in one joint mandates the following MRI’s: both knees, both hips, both shoulders, both ankles as these joints are most vulnerable to loss of blood circulation. They may not be hurting you but to just take an MRI of one joint hurting you shows how unknowledgeable about AVN the doctors are. The truly knowledgeable ones find out early stages when there are things that can be done other than waiting for “collapse” and joint replacements (the unknowledgeable ones think nothing can be done but joint replacements as they do not read new experimental treatments). Often to see a True AVN expert means one has to have the cash and an insurance type that allows one to travel. Many times true AVN experts will publish papers on the disease (but I got caught in a bad situation by relying on one doctor who publishes so there was this name recognition but all he did was drill holes in my AVN joints not putting in bone growth hormone, grafts, let alone stem cells.) I do think state universities are trying newer treatments other than joint replacements but am not certain of this. Jeff, I have AVN in knees, hips, and one shoulder. I would like an overall bone scan to see any other possible areas but the scans are not accurate like MRI’s and maybe a part of me doesn’t want to know. No doctors has ever offered such a scan to me. Yes, I too get depressed but a day at a time. I’ve been coping over 2 1/2 years. I have had stem cells in 4 of the joints but don’t know the outcome yet but will get ex-rays soon though that’s not the best way to diagnose new bone growth. Doctors don’t want to use MRI’s. Too costly! In Europe the cost of an MRI is $250 and most Europeans are covered by socialized medicine. I am in a lot of AVN groups. Reading how others cope, who they see, what they have done, what they do re work situations, pain, etc., has lessened depression and kept me living on a day at a time. Check out Mayo Clinic’s website soon. In June 2013 they uploaded a video I discuss above. 80 to 90% rate of saving hips at stages 1 and 2 sounds remarkable to me. They published a long medical article I believe June 15, 2013 in pubmed (it’s there but not certain of precise date). Progress is being made.
Hi all
I was diagonised with AVN last year, under went Core decompression, but it did not worked well. After that I have been getting treated with traditional Indian system of Medicine. Now they is very little pain I am able to to walk upto 5 miles and also squats are possible now. My doctor has advised to get MRI done in Feb 2014 and also asked to get this treatment upto end of 2014.
Wanted to know from any body here that if there is no pain then is that a sign of regeneration of bone. I am not taking any pain killers (tramadol) from last 5 months. My doctor is not ready to say anything in this regard at this point of time. Your feedback is highly appreciated.
Cheer’s
Sachin
Hi where u r getting traditional treatment kly send address on my email
http://www.ncbi.nlm.nih.gov/pubmed/24145698
In 2002 or so I was dx with bone infarcts in bothe ankles, but they really weren’t that bothersome. Then years went by and we tried injects of all sorts, viscosupplementations, braces and ortotics of all sorts and we considered Plasma
Then in 2013 I’d had enough and checked with Paula Buchanan and Sharon from Denver) and they made some recommendations; plus I had a humomgous mouth of support. I saw Dr. Stevene Haddad in Glenview of the Illinois Bone and Joint institute in Glenviw, Il, just outside of Chicago where I lived for 26 years. Now, I’m 4 weeks post op and would recommend to anyone that faces ankle problems, that there ARE alternatives to fusion.
Ankle ON is difficult, but there ARE options, find the physician who doesn’t know the meaning of ‘I can’t’, ‘there are no more options’ They do exist. There aren’t a lot but for starters,Check googles list of 23 top foot/ankle surgeons
Has anyone ever heard of platlet rich plasma injections for AVN?
Good Lord. I’ve had ON in just about all joints and some of my long bone and most recently I had my ankle replaced and was quite pleased with the results. As luck would have it, I’ve had several fractures to my feet. I know of someone who has had it (ON) in her midfoot and had successful surgery, but I’m wondering if any of you have experienced continued FOOT pain after an ankle r replacement or foot pain (that isn’t bunions!) This contributes to imbalance, safety issues because of my poor balance, I’m ‘old before my time’ at 63 and I feel like I’m 90. Does anyone have thougts? I’ve conquered every situation through PT or replacements and will do it again if I need to. I’m probably moving back to Chicago, so Dr. Haddad again isn’t out of the question.
Hi, I did get PRF injections when I had fracture and no AVN, after my last injections is when They diagnosis AVN. I think it was the
reason, but OS didnt think so!!!
Does anyone work with/volunteer for the National Osteonecrosis Foundation? I was diagnosed a year ago when I was 29 years old, my hip collapsed in January, and I had a total hip replacement in February. It all happened so fast I am really just now processing the fact that I have the disease creeping up in my other hip too. Now that I am post shock of everything, I want to get more information but the websites for the National Osteonecrosis Foundation is terribly out of date and uninformative. I would like to do something about that because with a name like National Osteonecrosis Foundation, you should be one of the fundamental resources for a patient trying to thrive with osteonecrosis.
Hello everyone. I am 21 years old, and I was just diagnosed with Stage 1 AVN In both femoral heads. The MRI shows: On my right hip, its about a 1.8mm circumference dead spot, and on the left it is about 1.0 mm circumference dead spot. My left exhibits no pain, and my right exhibits pain only when on my feet for long periods or doing strenuous exercises.
I went to my a family friend who is an osteosurgeon based on a complete hunch. I am a powerlifter and competitive weightlifter, and I was experiencing lack of range-of-motion in my hips when performing squats. Eventually my right hip was getting very tender after training sessions or after being on my feet for extended periods. So I went to the osteo-surgeon, got an MRI, and got the news. He ruled it as unexplainable and idiopathic.
The doctor said that the spots are so small, it would be silly to try to do any aggressive treatment. He instead told me to not perform any weight bearing exercises and was ordered to be using a cane at all times to support mainly my right hip. He said after about 3 months, we will do another MRI to see if the AVN is progressing or recovering. If it begins to recover, he said we will likely just need to keep a close eye on it, and be on a cane/crutch until it is healed. If it progresses, he said we will speak about our options then. I am a month away from my first MRI since being diagnosed with AVN 3 months ago.
I am nervous. My most dear hobby to be is powerlifting and olympic weightlifting. Being away from it for 2 months now, has made me very depressed at times. I can’t imagine if I am told I can never do it again. I am passionate about human performance and human movement. I am pre-physical therapy and a very active person. All your suggestions and advice are welcome.
Taking steroids? If so, don’t fool yourself w/idiopathic answrs. Steroid use is a mechanism that that is becoming quite a fore- runner in avn. If you drink quit that too! Decompression without stem cells gives you 7yrs before replacement with stage 3 necrosis. I’ve just read on this site getting 7 yrs with stem cells is considered successful, doesn’t make any difference to go that route unless they positively can say “you’ll be curred” & insurance covered. Once your hips are replaced you’ll be ok for weight bearing again, no contact sports or ladders. I see a lot of people are waiting for a miracle cure or traveling all over spending thousands on Dr.’s drugs & wait & wait in unbelievable pain that sucks there spirit and energy to end up w/a replacement anyway. Replacements suck, But “THEY TAKE THE PAIN AWAY” you can get on with your life and try to accept the changes so you don’t end up a whiner but it’s inevitable that a replacement will be the best choice. Wow 21, was 48 when left hip( total collapse) was replaced & right decompressed(stage 2-3ish) projected longevity 7yrs. Replaced 71/2yrs later. Suspect Flonase caused avn. Please try to turn this positive, The exercise community really needs people that can help us w/ prosthetics. All I ever hear from my surgeon is walk, walk walk. Take Care
Flonase? The nose spray?
Hello all, I read the blog entry from last year called “Managing and Living With Chronic Pain” last night. It made a few things clear for me that I had not considered. I didn’t realize how much the pain was affecting mentally and physically. I am 34 years old and I have AVN in both ankles and hips that are diagnosed. There may be more areas affected that haven’t been discovered yet. I was “med shamed” a few weeks ago by a resident at my ortho’s office and I went off my pain pills abruptly. Not a good idea. I decided to take my prescription last night after reading so many posts telling me that I’m not alone. Thank you for that.
My story: In 2011 I was diagnosed with breast cancer. I had a Bilateral mastectomy and reconstruction that year and I thought I was done. Near the one year anniversary of my diagnosis of BC I became very ill and it was discovered that I had leukemia. Acute Lymphoblastic Leukemia to be exact. As an adult with this disease I knew I had a 40% survival rate. I had to leave my job and did 9 months of daily/weekly chemo before I finally had a bone marrow transplant from an anonymous donor in January 2013. There have been no signs of cancer however a transplant usually trades one illness for another. I got graft vs host disease that was successfully treated with steroids but they steroids decimated my bones. I’m left with crippling AVN and osteoporosis. I’m able to work two days a week right now with pain medication but activities are severely limited. I’ve had 5 fractures including ribs, sacral, spinal and ankle. My left ankle has two screws in it to stabilize the fracture and maybe help AVN. I’m not seeing many answers and hope right now for getting better. I know I should be happy that I don’t currently have cancer but my life is still so much affected by my new disease.
I’m 3 months s/p my INBONE ankle replacement and I’ve seen the CTs and x-rays. Success-so far, I’ve got miles to go in rehab and inpatient rehab was very limiting. For 6 weeks I had to be COMPLETELY non-weight bearing. Yjsy many PY hosl esd dytrnyjrning my opposite side and cire muscles . So that meant daily (rwice a day) my challenge was to lifer heavier.
After 6 wens, we obtained another CT and set of x-rays to see if the protheses would be able to withstand the pressure of 3-4 transfer arepa ,.for another week , as I’d graduated from wearing my air cast to my sneaks. that was the most odd feeling..With ankle replacements, “*NO running.for the rest of my life, but golf and huking are in” I would recommend that if anyone has ON ankle or talar dome, he /she look up front he’s doctors and see what they have to say. Google’ 23 top foot/ankle surgeons in the United States’.
A concern that I didn’t have, but many might have is that they may not last that long. Well, my research tells me 10-20 years and that is a legit concern for someone who is 20.. There’s another replacement in store for them., most likely (but I think they call it a revision and it’s not a big deal) I’m 62, so even if I’m limited to 10 yEARS, how ACTIVe will II BE AT 72? or 82? an what kind of activity , at that.?
Basically, I’m just starting my rehab. I get home care PT (this home care agency specializes in ortho rehab) for 2-3 ties a week and as soon as I nam drive, I’ll get outpatient PT. There are several kinds of replacement and let the surgeon determined IF you need a emplacement or other treatment.
Ankle update and prayers for one of our cyber friends, whom, I think she wishes to remain nameless. OI have a post for loopy who was recently diagnosed with cancer. Please those of you who are includined, pray for loopy305 (there I’ve said it!),
Hello all..GREAT NEWS FOR ME..I HAD THE “HERNIGOU PROCEDURE” done at a major NYC hospital on Dec. 4 2013.. I found out in mid May 2014 that .It was a total success..!! My Dr. is thrilled as well, was for a non-union hip fracture.**.caused by me falling on concrete..also having osteoporosis. Been going to P/T 1-2 times a week for about 3 months & its helping me a lot..I can now walk.. with NO limp..and only use walker to walk for long distances..I have to keep up with exercises and Dr. will still follow up with me..but said my non union fracture is fully healed.. ” THE MIRACLE OF STEM CELLS” I AM SO HAPPY THAT I AGREED TO HAVE THIS PROCEDURE DONE…IT WAS MY ONLY CHANCE OF EVER WALKING AGAIN.. [and pain is just here & there..not bad..] all of this in only 5 months.. yeahhh for me..& thank GOD for my fabulous surgeon… [ taking my calcium citrate caps..& vit D religiously also !! ]
I would love to hear back from anyone else who had the hernigou procedure..or anyone I can help with any questions about it.. bye for now..
Hi Susan,
I am a 38 year old man with no other medical problems who had a fracture of right hip after fall in January 2014 & have been recently diagnosed with AVN. I am miserable with pain and limp. I would appreciate if you could let me know which surgeon helped you with the stem cell therapy ? Appreciate your help
Google Dr. Cynthia Kelly in Denver Colorado. They also do non union fractures with stem cells. She performed my hip stem cell decompression with cells with a great success..good luck
I am having a hard time taking the arginade. I bought the cherry one online and the taste is unbearable. Any tricks to take it without vomiting after?
Been awhile for me here. In fact seems as if this whole thread has gone cold for a bit. But I wanted to respond to youTracy. I was dx bilateral avn femoral heads in March 2012. Had core decomps with Dr Kelly left side Oct 2012 and right side Apr 2013. a few months ago I developed peripheral pains in my fingers toes heels and wrists. Strange achy pain. worse after using my hands to grasp things or being on my feet a lot. Have had a full work up through rheumatologist which of course showed nothing. But I found it interesting you are kinda having same symptoms as me. Any correlation to AVN do you think? I’m going back to Dr. Kelly in a few weeks for a 1 yr checkup and I’m going to have her xray my feet- strange new pains always seeming to pop up…
I have a ? what are the risks if i take prednisone after core decompression surgery of hip I have chronic copd and have to take prednisone off & on for my lungs thank you
I am going to have to look up the Hernigou procedure. I have not heard of that before. I am living in MN and thankfully pretty near the Mayo Clinic so I am hopeful that that may be able to deal with my seeming relapse with bilateral AVN of my hips. I had core decompressions done in 2006 and have been mostly pain free but starting to notice more than the occassional pain I was having for the past 8 years. From 2006 until about 6 months ago I would only have pain when doing something out of the ordinary for myself- like too much or too fast walking, climbing up on something, etc. Recently it is starting even when just laying in bed. It is not bad enough yet that I would consider a hip replacement but I will certainly have to look into treatment options to see if I can get some kind of pain management. Does anyone know if you can have a core decompression done more than one time? I experienced very little surgical pain and was thrilled with my surgery. It was quite a long time to be on crutches but hurt so little that I sometimes forgot I had to use them.
My surgery was done by Seth Leopold in Seattle at the University of Washington. He was amazing and I would highly recommend him for anyone who can get to Seattle. He may be a little tough to get in to see, but there is a reason for the wait! Often times Universities are more up to date with recent medical techniques than their counterparts at different hospitals. This is something you should at least check out no matter where you live. I was concerned about moving to MN 5 years ago but Dr. Leopold assured me that the Mayo Clinic was a fantastic facility that would have no issues in dealing with any kind of relapse. I believe he had told me at the time that the next step would be either full or partial hip replacement but I am wondering now if my original surgery or one of the ones mentioned above might be possible.
I too was in my early thirties when diagnosed with left hip pain only, although my condition was equally bad in both hips. I have Chrons Disease and had been given everything from chemotherapy to try and treat it- to high steroid doses. Nothing worked and I ended up with a temporary illeostomy and then a year later a j-pouch. I think I have had 6 surgeries so far- and had a baby- and somehow I am still going. Some days the hip pain, and shoulder pain, and jaw pain just feels like too much and really wears on me. Other days I remember that there are many people who are worse of than me and have had to go through much more. It gets so tiring that with my Chrons I am not supposed to take NSAIDS but that I am in constant need to help with my hips and other pain. I don’t even know if my jaw and shoulder pain might be AVN too. I have been told I have a rotator cuff problem but am starting to wonder since it seems to be ongoing for a few years now.
Please reach out to me if you have any questions for me or if you might know anything about relapses of AVN and possible treatments.
Thanks and good luck to all of you!
Thank you thank you for all of your information. I have been reading non stop since yesterday. I am 40 years old. Factor V Leiden and MTHFR Hetero and recently diagnosed with AVN in my shoulder and knee. I have already reached out to the drs you recommended. I am in California so if you have any recommendations closer please let me know. At this point every doctor I see has never seen AVN before so I am wiling to go wherever to get resolution. I see you went to conferences at Stanford… any recommendations there? Again, thank you so much! Happy Thanksgiving!
I have Factor V, but I have another blood clotting disorder so the docs don’t know what my cause it and unless they can drain all the blood from me, I’ll never know. But, let me see, docs with reputation as being knowledgeable about ON in California (or near Stanford)? Annie
Hello, well here is how I ended up with ON/AVN. On May 29th, 2011 at approx 5:25 PM I was climbing the staircase to our second floor apartment when the staircase collapsed while I was on them. I was carrying a 40 lb. bag of potting soil and in my other hand I was holding onto a large cemetery pot for my parents grave site. The staircase and myself came crashing down to a slate sidewalk below. My right wrist and right ankle were crushed. The doctor said that they were shattered. The night of the accident I went through surgery on my right wrist. I awoke that night after the surgery but only long enough to say goodbye to my wife and Son, it was about 3 am. The next day, or later that morning I discovered that they didn’t operate on the right ankle because they didn’t know how to repair the damage. I knew it was bad but didn’t know how bad other than the doctor left my room, that night I arrived, when I said I would be happy to just keep my foot. I had some idea that the damage was extensive. Well, three days later they transported me to the University of Rochester Medical Center to have them look at my injury and to repair the damage. I was in surgery for a long time but when I came out my ankle had been repaired. I was then told by the attending Orthopedist that I still faced a lot of challenges. I could be facing a condition called Avascular Necrosis. For the next year of seeing this doctor every month I faced this challenge. I had osteopenia unknown to me that this is the onset of getting AVN. Everything looked as though I might not get it too soon but on what we thought would be my last appointment, on July 6th, 2012, I was officially face with our worst fears, the x-Ray was displayed on the computer screen, my talus (ankle bone) appeared pure white. My Wife and I looked at each other and knew, it’s AVN! What next we thought to one another. I had already endured three surgeries, two on my ankle and one on my wrist. All I could think is that SOB landlord! The Doctor gave us three options, one, do nothing and let’s see if it turns around and comes back to be a healthy bone. Option two, have another surgery fusing the heal bone and talus together with a bone graph, sub talar fusion. Option three, full fusion. Upper and lower part of the ankle fused, meaning no flexation at all. I immediately chose the sub talar fusion but we were sent home for two months to think it over. We came back to the appointment and started the process for the next surgery. Mind you, I’m still working most of the time, about 32 hours a week. Well surgery date set, October 18th, 2012. I explain to my supervisor and said I plan to return to work within a week. I’ll be back but in my walker. No problem BUT, this surgery was Pain on Steroids! I thought for sure the accident was bad enough, NOPE, this was worse. I was out two weeks. Now I have another set of DR visits that lasts another year. This time it was different. The fusion appears to be taking. The graph could have been successful! I still had some areas that appeared with AVN. The majority of it was gone. The vision was supplying much need blood to the dead bone. On my last appointment the AVN appears to be gone. I can’t say that my pain is gone though. I still have severe arthritis on my upper part of the ankle. I had a Hawkins type III beak of the Talus. The truth, it should have been diagnosed as a Hawkins Type IV. The only thing is my ankle wasn’t totally exposed. Nothing more and it would have been the later of the two. I am Blessed, most would say Lucky! I know it’s a Blessing! Don’t give up your Faith in God!
I started a reply with 2 other docs, one a Dr. Milan Stevanovic and
DR. SONU AHLUWALIA OSTEO 120 S. Spalding Drive, Suite 401 Beverly Hills 310.659.291
There was another doc in Redding, CA Where is you ON?
Hi
I need to post my MRI images here.
How can I do it.
Cheers
Sachin
Hi Sachin,
Would like to know the traditional methods that you used and if it helped you. I have been consulting Ortho Docs but without coming any conclusion on the line of treatment that I should follow.
Cheers
Ashish
I just discovered this forum. Other health issues interfered with THR. R hip. Avn dx 2010. Horrific chronic pain began when hip collapsed 2006. Five doctors,of which two were orthopedic specialists failed to diagnose avn. Walked around with this pain for four years. More recently using wheelchair & rollator past four years. Total of eight years. Currently pain in L hip. Can only bear weight for very short periods. History of alcohol use, steroids,hyperlipidemia,osteoporosis/osteopenia and other possible mitigating factors. I suspect V Leiden. No testing yet. No funds for stem cellprocedure. 2002 crushed R knee due to fall. Three surgeries one closed knee manipulation as well as 8 weeks immobilization. More surgery needed for hardware removal and severe arthritis and scar tissue, perhaps avn? Diagnosed years ago with osteoporosis/osteopenia. Also have history of tail bone injuries due to falls such as hiking in mountains resulting in back pain & spasms. Now Wondered if situation with R knee injury led to R hip AVN? Severe chronic pain,depression and anxiety, isolation…Significant muscle loss from inactivity. Unable to rotate R hip. Pain management has not been adequate. Only leave home for medical appointments past eight years. People around me don’t understand and never will. What would you do?
Hi. My name is Keith. I have had FFG for AVN on both hips at Duke university Apr 2014 and October 2014. I really want to hear how people have recovered a year, 2years, etc. from these procedures. I have a lot of pain in my left hip, not as much as before surgery, and pain in my right lower leg. I also have claw toe on my right side. I feel like I should be feeling better but struggle because i feel disappointed I’m not better… Is it normal to still stuffer?
The Leiden V and other clotting factors seem to be a primary cause of AVN – I have an idiopathic knee osteonecrosis and my doctor never asked about this genetic issue. Is there a likelihood of multiple joint involvement.. ? Is a blood thinner of any use?
thanks
ralph
Yes there is the likelihood of multiple joint involvement but this also depends on why you developed AVN in the first place. For me blood thinners were a miracle.
Hi, I hope I am on the correct page for My Story.. I am Judy and I am 55 yrs old and have been dealing with Multi AVN… for 15 years… I have avn in all 12 major joints.. both hips, knees, ankles, wrists, elbows shoulders one finger and 1 vertebre.. I have had 2 core decompressions on hips failed.1 right hip replacement , failed.. they also fractured the femur with the last whack of the mallet shoving the shaft into the femur so i have what they call a “bread tie” wrapped around the femur.. I also found out 3 weeks after surgery that i was allergic to the metal they used..and now my leg had grown longer because of the shaft loosening and slipping out of the femur.. the L4 vertebre is completely black .. the left femur has been collasped for about 10 years..both ends of my femurs and humurous and ulnas and tibias and febulas are all dead.. I havent had anything done since the failed hip replacement which i had done against my better judgement and in an emergency at louisville ky..because of walking on sand i had broken off a chunk of bone off my hip ball and it was lodged inbetween my ball and socket..i was passing out from the pain.. but because of them having little knowledge of AVN .I refuse to have any more surgery any where BUT DUKE UNIV. in North Carolina.. The grand fathers of this horrific condition have their own hospital and or wing there just for AVN… I live in KY.. I have been told by many doctors(including Glueck) that avn pain is second ONLY to bone cancer… mine was so bad in my shoulders in the begining that my bone marrow was actually pushing out of the end of the humerous.. mri technicians rarely personally comment on their readings.but mine had put “no wonder this woman is in so much extreme pain” ..my left knee femur had died 5 inches up my thigh..that was 6 years ago..my bone marrow will NOT stop dying…. I HAVEN’T HAD STEROIDS for almost 10 years now.. and once the bone has collasped the dying is suppose to stop.. 5 years ago they found a new bone starting to die..in my hand..I was tested for most of the blood disorders..nothing showed up but I still have the fat emboli in my blood blocking off any tiny blood vessel it can find..all my AVN was caused by MASSIVE doses of steroids for pnemonia and asthma.. I had pnemonia 10 times in 5 years in a row all from breathing in toxic fibers at my job.. my pain started from day 1 of solu-medrol.. even my nurse called it the devils drug..it is the steroid they give you in the IV.. IT was so hard on my heart that they had to give me valium before the steroid to keep my heart rate down.. the 5th time i was in the hospital i finally had a heart attack while recieving the solu medrol…that was the LAST time i let them posion me…I was on steroids for 6 months a year for 5 years..
I take more pain meds then a cancer patient..I am on 75 mck fentenyl patch..or duragesic patch.1 patch every 2 days….and 10\325 lortab 2 every 6 hours around the clock..total of 240 a month..plus trazadone and 2 muscle relaxers a night to help me sleep..which it doesnt..the patch plus the pain keeps me up and turning every 45 min..all thru the night.. the surgery on my leg thigh will have to be extensive.. hip and knee replaced at same time with a metal rod attaching them together.. atleast 2 years rehab and they still don;t know what to do about attaching muscle and ligaments etc to the rod.. every min of every hour of every day for 15 years..some where in my body it feels like 100’s of hand grenades going off in my bones..that is what causes some of the pain..the bone marrow is what is actually dying from no blood supply..and it builds up gasses… causing pain..I call it road kill diease..(smile) cause of the gasses that swells up road ikill we see in the road.. then eventually the gasses release thru the soft ends of the bone..and pain lets up a little.but then it starts all over again..marrow dying..gasses building up.. the pressure is unbelievable and i have shed more tears over pain then any human has a right too..now…I have found out..more bad news…
I now have a 4.6 cm anuerysm on my aorta on my heart..a defective aortic valve and another anerysm lower down my chest.. i have had chronic high bp for over 36 years and smoke.. but the anuerysms and valve are heriditary….so… i am more hindered then before . they will do surgery when it gets to 5 cm.. i go this month for another measurement to see if it has went from 4.6 cm to 5.. but I AM THANKFUL God let them find it and give me another chance at a new life..
I am so sorry for all the mis spelled words..it is late and hard to see what i type right now.. but what i want to leave you with is.. sometimes it feels like we are dying from this bone condition.. but it wont kill me..so i am still thankful cause it could be worse..it could be cancer.. so i am thankful in this way.. my plan of action for now is.. wait till i have open heart surgery to replace the valve and repair the aorta..which they say i cold have a big chance of dying because i will be clinically dead for up to 45 min for them to replace the aorta..there is no way to hook me up to the heart lung machine..so my head will be packed in ice and body chilled.. then i am moving to Georgia.. to be close to my daughter and i will be only a few hours from Duke un. from there.and maybe have some surgeries… I know i probably left some stuff out..if there is ANY questions you have or want to talk.. just let me know..I have studied this condition for 15 years now… i have taught my family doctors alot about this diease.. matter of fact.. my MRI’S are at quite a few teaching hospitals so the NEW doctors can be taught visually what damage this thing does to all the bones.. oh and a little tibit not many know but have you ever laid down and your pain got worse? that is because of the shifting of pressure of the gasses inside your bones…will effect your pain.. got that little info from Glueck…(smile) sorry for the novel..just wanted to explain my case.. thank you for reading and know you have someone understanding your pain and frustrations at your life as you knew it was changed.. God Bless You..Judy in KY
oh and i wanted to ask..anyone have the metal on metal replacement? and have they had the test for metallois? the metal shavings from the metal on metal? they recalled this type and i DO have this metal on metal.but havent had the blood test yet.. thanks..
Wish I understood how this happened.. had a ultra sound of my leg.. nothing of interest.. in the data. Your site quite interesting.. when my knee started to hurt, I only saw one mention of AVN… and that was in passing. My sense is that if AVN were more widely understood, people might intervene sooner and avoid lasting damage. As you probably have noted most Doctors are not very thoughtful, especially when faced with a novel issue. An issue outside the standard statistical curve of illnesses.
Unfortunately, many docs have grown used to public peception of omnimpotence. They feel that the sheer admittance that they don’t know ALL there is to know about EVERYTHING will make them seem less of a physician, less of a person and will go a long way towards knocking them of the pedestal that we’ve put them on. After all, they are human. Many have not studied osteonecrosis at all, and if they know about it at all, it’s from having had a patient with it in medical school or done a rotation in orthopedics and a patient had it. Even then, what was taught about it didn’t stick, so I can’t fault them for not knowing. But they should be human and willing to admit that they don’t know something and be willing to learn. I’d prefer the doc who tells the truth over the doc who tells you what he things you want to know! Annie
BTW my doctor friends have given me an insight into the medical profession- they type cast Doctors as cognitive or non-cognitive physicians.. Orthopedic medicine is often viewed as non-cognitive.. just carpenters.. An interesting perspective for us seeking AVN answers; we want and need COGNITIVE doctors. Among interests I am a medical consultant and I see this attitude when faced with any new forward leaning idea.. that breaks their OODA loop. You will have google that term.
Hi. I posted my story on here a couple weeks ago maybe and i see it isn’t on here now..or still waiting to be approved? was just wondering if I need to just wait a little more or did it get lost and I have to post it again? Thanks and God bless all the ones suffering today.. Judy in KY..
ok I am sorry I see it has posted on here now.sorry for the confusion… Judy
moderator..just delete my last replies and posts i see my post is still waiting approval… thanks..
Hello. I’m 30yrs old with 3 kids. I was diagnosed with crohns disease in 2006 and diagnosed with osteonecrosis in 2014. My drs down here don’t really know what to do with me. They say the steroids caused the ON. St first it was in my knee and now my shoulder. So I can’t use crutches to take the weight of my knee or my ankle. I will always have to take steroids for my crohns. My 3 girls play softball so I’m a softball mom. I’m at every practice and every game cheering them on. With 3 kids you can’t really take things slow. I’m going to physical therapy for my hip but it’s not helping any. I don’t know what to do. My dr has never seen a case like mine and pretty much tells me since I’ll remain on steroids it’ll probably just get worse with time. I’m looking at a knee replacement before I’m 40. Can anyone tell me something I don’t know that might help?
Thanks