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) 
I was Diagnosed with bilateral AVN on May of 2012, at the age of 47. At first they thought it was a tennis injury and a possible labrum tear on my left hip, so my Orthopedic Dr. gave me a Cortizone shot. Once the pain didn’t go away the Dr. prescribed an MRI and he found out that I had bilateral AVN. Like most people I had no idea what AVN was so I started reading about it and learned about the condition.
My AVN on the left Femur was far worst than the right hip and that was the side that bothered me the most. Since I had never had surgery before in my life, I started seeing multiple orthopedic surgeons and Rhuemetologists. I was prescribed the drug Fosomax and I took it for a couple of months and the Rhuemetologists prescribed Forteo injections in hopes that the AVN can be cured without surgery. The medication did not work and by July I was walking with a walker.The doctors also recommended Core Decompression, but my left hip was on the verge of collapsing and I ended up having a full hip replacement on August 14, 2012. The surgeon I chose, Dr. Jason Snibbe, was recommended by multiple surgeons and my physician friends. I was hospitalized for one night only and I was walking with a walker from day one. The rehab and recovery took almost two months and I was on the soccer field referring my daughters’ games by November.
By end of November my right side was starting to hurt, so Dr. Snibbe recommended Core decompression for my right hip since it had 80% chance of success. I took his advice and he perfomed Core Decompression on my right hip Decmber. Core Decompression is very painful, eventhough the recovery is fast, two weeks on crutches only, but the pain is gruesome. I followed up with couple of x-rays and we were hoping that it had worked. By mid April of 2013, I started feeling pain on my right hip again. I did another MRI and the AVN has progressed. I met with Dr. Snibbe today and I’m scheduled for my second full hip replacement on June 25th.
Like many others on this blog, I’m sharing my story so people could hear what others with our condition have gone through. My left hip feels great and I wish I had replaced my right hip back in Deccember. My condition has been hard on me and my family, but worst things could have happened to me.
To everyone diagnosed with AVN, make sure you read up on it and talk to multiple specialists. There are non-invasive procedures that make the recovery time much shorter than years ago. Every surgeon is used to their own way of operating and you need to find the right one for you. Like I said before I was up and walking with no walker or cain in less than two months and I’m certain I will be in good shape and spirit soon after my surgery.
We are a small group and we can help one another. Email me if you have any questions.
Jay,
Core decompression wasn’t successful for me either. It seems it’s hardly ever successful when you start reading other people’s stories. It’s great that you were able to get hip replacements. Unfortunately, for those who are diagnosed with AVN when they are in their early 20s and 30s doctors are much less inclined to do hip replacements. Largely I’m sure because insurance companies don’t want to pay for more replacements down the road as they last about 15 years ( if I’m correct). I think that’s why a lot of young people with AVN seek out other therapies like stem cell injections.
Luckily for me being treated for anticoagulants improved my AVN, but my disease represented itself in an uncommon part of the body ( bilaterally in long bone between knee and hip)
I’m surprised your doctors put you on fosomax when that opens you up to the risk of developing osteonecrosis of the jaw.
I think getting your second hip replaced is the best thing you can do for yourself!!! Good luck. Keep us posted on your recovery. Thank you for visiting my blog and for sharing your story!
Cassandra
Hi I’m Ryan i know how you fell I am only 19 years old and i have been suffering from AVN for 2 years now and i understand how the pain fells not being able to do the stuff you want to do also. I have been through 2 hip surgery’s and i got bone grafting done on those 2 hips and it only lasted a year so just a few weeks ago i just got a hip replacement. I have also had 2 knee surgery’s done and I am also going to have to have 2 knee replacements soon So i have about like 6 more surgery’s coming up. So Im just telling you I know how you fell and i fell your pain
I just want to say i am praying for you and praying for a great healing and a way for you to get better. I am hoping someday they can find a cure for this AVN.
Im praying for you and just remember God is with you and like it said’s in the bible
God will never leave you nor forsake you
Hi my name is Giani necrosis it’s a beginning stage on my right hip ,doing stem Cells therapy Hopefully eventually will help
Jay, take a look at;
http://clinicaltrials.gov/show/NCT00781261 paying particular attention to “Osteonecrosis of the hip is an important cause of musculoskeletal disability and finding therapeutic solutions has proven to be challenging. Osteonecrosis means death of bone which can occur from the loss of the blood supply or some other means. Although any age group may develop osteonecrosis, most patients are between 20 and 50 years old. The most common risk factor is a history of high steroid treatment for some medical condition. The next most common associated condition is a history of high alcohol use. There are some cases of osteonecrosis that occur in patients that are otherwise completely healthy with no detectable risk factors.
In the earliest stage of the disease, x-rays appear normal and the diagnosis is made using MRI. The advanced stages of osteonecrosis begin when the dead bone starts to fail mechanically through a process of microfractures of the bone. As the disease progresses, the surface begins to collapse until, finally the integrity of the joint is destroyed. A wide range of surgical treatments with variable success rates have been proposed for the treatment of the osteonecrosis to preserve joint integrity, including core decompression, whereby the venous hypertension that ensues is lessened and revascularisation may be induced leading to bone repair. Nonsurgical treatment options are limited and usually result in a poor prognosis. Early stage disease can be treated with protected weight bearing and physiotherapy, however some studies have shown protected weight bearing to be associated with a greater than 85% rate of femoral head collapse. Unfortunately most studies indicate that the risk for disease progression is greater with nonsurgical treatment than with surgical intervention. There are no established pharmaceuticals for the prevention of treatment of osteonecrosis. Evidence is increasing that the nitrogen containing bisphosphonates may be beneficial in the treatment of osteonecrosis. One bisphosphonates (alendronate) has been evaluated in 60 patients diagnosed with osteonecrosis of the hip. Recent clinical studies have shown very promising results. All patients had symptomatic improvement after one year. Although the follow up time ranged from 3 months to 5 years, only 6 patients progressed to the point of needing surgery.
From that, I isolated, “Evidence is increasing that the nitrogen containing bisphosphonates may be beneficial in the treatment of osteonecrosis. One bisphosphonates (alendronate) has been evaluated in 60 patients diagnosed with osteonecrosis of the hip.”. I was on the bisphosphonate, Actone.
I don’t know the stats on people with ON who take bisphosphonates who develop ONJ, but I’d imagine that stat to be somewhat small and progressive.
I know that last week, my ortho almost put me on Fosamax for the ON, but we decided apt go a different wasy
Annie
Thanks for responding Casandra. I will definitely keep everyone updated with my progress. I wanted to add a couple of things to my earlier post. The older devices used to last 12 to 15 years, mostly because of the cup or the shell. The body would reject them. The surgeons are now claiming that the new materials used for the cup, the head, the neck and the stem could possibly last 25 to 30 years. I hoping that is the case.
The UCLA Orthopedic group in Santa Monica has been treating AVN patients with bisphosphonates such as Fosomax and they have had some success in patients. The treatment is long-term up to two years. Obviously in my case I did not last that long and my left hip collapsed 3 months after being diagnosts with AVN.
I recommend that everyone should read and study as much as possible and not leave it to the physicians to make all the recommendations. A good place to start is WebMD, they have a quick article on AVN symptoms and treatments:
http://arthritis.webmd.com/avascular-necrosis-osteonecrosis-symptoms-treatments
Jay
James,
Thanks for commenting on my story and for asking about muscle deconditioning. I should add also soft tissue deconditioning which might even be related to ON although that has never been specifically stated by any doctor I have been seen by. As I mentioned in my posting, after my first trip to China and 30 day hospitalization, I was able to reduce the amount of narcotic pain medicine by 70% because of the deep tissue massage I received during daily 90 minute treatments. Unfortunately, those of us in most western and developed countries do not have low cost deep tissue massage available on a daily basis and for 90 minute treatments. When I returned from that first trip I found a physical therapist who had his practice at the local YMCA. Additionally, the YMCA has a therapeutic, warm pool that the physical therapist uses in therapy. I spent the next three years in treatment with the PT and continued the in-pool exercises when I was discharged from therapy. Because the therapeutic pool is at 90-92 degrees it makes movement much easier than a regular pool for someone with bone and muscle pain issues. My suggestion is to obtain an order for PT from your doctor and have an evaluation by a well-trained and experienced physical therapist who has access to a therapeutic aquatic program (warm pool).
I also read in the thread of the postings about fosomax therapies offered by UCLA. Very early, before fosomax was implicated in jaw ON, I was treated by Dr. Cornell at Hospital for Special Surgery in NYC with a fosomax cocktail he had discovered by accident which he had had some success in treating hip ON patients. I utilized the treatment until the fosomax and jaw ON issue was identified. I do not know if he has resumed treating patients with the mix of drugs he had prescribed. I did not experience any success with the treatment nor was I ever diagnosed with jaw ON.
My name is Sharmaree and i have ON of my ankles feet knees and wrists and think its starting in my right hip and left side of my jaw. This all started in January 2008 when my body just started attacking itself and by May 2008 i was laying in my bed and was hardly able to put pressure on any part of my body to turn over even my knuckles felt like they were going to break if i tried reaching for the sheet. By February 2009 i have both ankles and both feet broken with bone fragments floating between my bones and between my knee caps and was in a wheelchair. Slowly i was able to tolerate the pain and learned to walk with a walker and air boots. After about 3 years the bones were able to regenerate enough bone with large amounts of vitamin d. In January 2013 i started seeing a new orthopedic doctor who suggested that i do the aquatic physical therapy and within two weeks my right foot had another broken bone and they stopped the pt. The warm water hd relaxed the muscles ligaments and tendons so much around the bone that the fragile bones broke. Lately the last 2 weeks i have been doing FAR infrared heat therapy and a great deal of my pain has subsides in my ankles and feet, some of the numbness has subsided in my knees and i dont have pain in my hip and sciatic nerve. The only thing that im not sure of is im having a tingling from my hip doen to my toes that has started. It kinda feels like when your foot goes to sleep and startts getting bloodflow back but without the pins and needle feeling. Any suggestions on if this could be a good thing?
Today I saw a typical American orthopedist. He is in major east coast city in ritz part of town with great background. I brought one page history and 5 questions; MRI’s from 2 years ago; most recent ex-rays. He kept me waiting an hour and came in reading nothing. He made clear he would not read anything nor did he look at the MRI’s (until later). He did look at ex-rays I think. He then gave me a lot of baloney to this effect (I’ve hips, knees, a shoulder with severe AVN): You have an “atypical” AVN. Usually joints collapse in six months. I suspect since it’s been 2 years for you it is atypical. I suspect your bones are full of “infarcts.” I know people say “infarcts” ARE AVN but yours must be atypical or your joints would have collapsed by now. All you have done has “harmed” your health (having stem cells by a world famous physican is a “harm”?). You don’t need MRI’s as you will “harm” yourself more. I suspect your stem cells haven’t helped you a bit. I wanted to ask him about the type of procedure he would use for hips replacement; for dealing with multiple infarcts of knee bones; a substance to fill in infarcts — he refused to respond to any questions like that. He was drooling when I said my left knee ached and did run out to check up on the MRI all excited but I said I wait until that knee collapses — no joint replacement before then. He looked angry and told me he would never authorize MRI’s for me and “follow up with the French!” .
Joan, it sounds like a lot of what he said is his OPINION and in my OPINION he ought to have told you that. I’m not sure there’s a rule of thumb that says, JOINTS WITH INFARCTS WILL COLLAPSE IN SIX MONTHS. I should think (in the example of knee or ankle) how much weight they need to bear is a variable.
I should think that the kind of motion (running or walking or not bearing weight at all) makes a difference in the time it takes for collapse. Then are the variables of what caused the infarcts. Was it something you had no control over, like lupus or a blood disorder that kept on being a variable? Or was it bisphosphohate-caused, and you stopped the bisphosphonates? I don’t think anyone can say ‘collapse will happen in 6 montths’ AS A RULE. But then again, that’s my opinion and others may have differing opinion.
Essentially, he said you wasted your time going to France. Hmm. Well, I think that also applies. IN HIS OPINION you wasted your time, but I think the only person who can answer that is Joan.
Personally, I’m not in love with people saying ‘IMHO’, but that’s what a second opinion is. “IN MY OPINION_____________”
This is a cruel disease we have and opinions are a dime a dozen from some docs. Some are well-based in fact but others are not so well-based. Some docs are well-known for their knowledge and giving good, solid opinion. But others aren’t so well-known for giving opinions. Its our job to determine the difference. That’s too bad, but sometimes we need trust one of those opinions.
I just reread that, what he said :”joints with infarcts will collapse in 6 months.” That would mean ALL of us, almost, would collapse. Not so, and i’m still walking around, in pain much of the time, but it is not intolerable pain, on ankles that have collapsed.
This doctor was without a doubt uninformed about AVN and should have admitted that instead of making things up about AVN that are not true. These were not “opinions” but erroneous statements about a rare disease nor did this doctor spend much if any time actually reviewing MRI’s, ex-rays, radiologist reports, or a brief history I composed. A better course of action should have been to admit I don’t know much about AVN and a recommendation I see someone who does or an offer to familiarize himself with it. I have studied AVN for 2 years and the statements he made are dangerous to the patient. I must take offense with this doctor’s behavior which I captured a small snippet of it and posted it. As for this doctor’s view that stem cells are a waste of time and worsened my health and were of no benefit (I told him differently), we all should be aware orthopedists and other doctors are keeping stem cells from the American public. American orthopedists are by no means in the forefront of studying the use of your own stem cells obtained from your bone marrow or your fat or your blood being used to treat a host of problems: cartilage repair, meniscus repair, living bone repair and yes dead bone repair. It is my personal belief stem cells are the future and I have no way of knowing at this stage that my stem cells did not work for my AVN. All I was asking for was a new MRI for a new lesion high up on a leg bone far away from where the stem cells were injected for lesions. It was because of orthopedists like this wasting my time and having no plan of action that I found out the cost of treatment in France (a mere $12,000 for the bone marrow aspirate concentrate stem cells procedure) and thankfully I got 4 of my 5 joints done at the age of 63. This is the same procedure Dr. Thomas Einhorn in Boston does according to my understanding. Notwithstanding the bitter and obvious statement by this 39 year old doctor motivated I am certain by the knowledge that stem cells are not going to go away from his little world of 24/7 joint replacements but are here to stay and evolve and grow which will greatly curtail his income, I am glad in France there is a wonderful doctor, a legend in his own time, who acts to save joints and that he treated me! I saw many many doctors just as uninformed as this young man was and just as hungry to do joint replacements on an older patient. I had to go to France to get away from them and get a rational treatment plan. That was after seeing 13 orthopedists who had nothing to offer me except one offered me drilling a bunch of holes into the joints and putting nothing into the holes. He always does that because he wrote articles on the procedure. At that time I was uninformed about AVN and let him drill the holes. Now I read constantly about AVN and I know nonsense when I hear it.
I just had the BMAC stem cell procedure done in my knee by Dr. Thomas Einhorn last week. He drilled into three different necrotic areas to inject stem cells and it went great. I travelled all the way from North Carolina to Boston just to have him do the surgery. His team was very accommodating to my special needs, as I have RSD/CRPS. I needed a Ketamine drip during surgery and then they kept me in the hospital for two days afterwards with a peripheral nerve catheter to further stave off a flare up. I am weight-bearing on crutches for 6 weeks. Because I have RSD, all the orthopedist’s I have seen for knee pain in the last decade have just chalked it up to the chronic pain condition. It was just by chance that the PA at the orthopedic walk-in clinic I went to decided to order an MRI and it showed AVN in two areas of my femur and one in the tibia. Since then I have had MRI’s of both ankle and both hips, all showing AVN except for the left hip. I also had a full body bone scan and it showed degenerative bone changes in both ankles, both knees and both shoulders. I get an MRI of my other knee next week and then on to my shoulders. The reason for my AVN is idiopathic, but RSD/CRPS causes a lack of blood flow so I think that is what caused it.
Wendy,
I wish you successful results from the stem cell injection. I’m glad you were a candidate for them!
How did you find out you have CRPS? Recently I saw an orthopedic doctor who mentioned that perhaps a lot of the pain from my AVN was in reality possibly due to me having CRPS. My pain has very gradually gotten better as my AVN has healed. However, until recently the pain seemed to lag behind the healing. I read extensively about CRPS. I also read that there is a correlation between ON and CRPS. Have you been checked for coagulation disorders as well? How do you treat your CRPS?
Thank you for sharing your story on my blog. I’m always inspired by the strength people have when facing this disease.
Cassandra
Can you please tell us what the name of the French doctor is? I am very hopeful for stem cell treatment for my hip AVN… All this conversation is making it more era and more scary. I am 61. Female. For the moment I do acupuncture, chinese herbs, tradition PT, to encourage circulation, and in general without much understanding of what’s to be expected…It is very scary…
So, please can you give me the name of that French doctor?
I hope you are doing well, now, 3 years later…All the best.
I think French doc is Hernigou. But there are quite a few who do his technique Now. Depends where you live, if you are considered a candidate etc
Let me clarify the cost was $12,000 for 2 joints done in a single operation in France. American doctors are charging $20,000 to $40,000 per joint. You must have insurance to cover stem cell surgery by American doctors. I have not priced Regenexx.
Regenexx is about $6500.00 per joint. I considered this procedure with Dr. Centeno but choose Dr. Kelly instead because the procedures seemed to me to be very similar and Dr. Kelly’s was covered by my insurance.
Hey, James. I just had decompression and stem cells with Dr.Kelly last week. I will have the other knee in about 6 weeks.
She’s was great!
Joan, I need to comment on what docs here charge compared to docs overseas charge. Often, the comparison is between pples and oranges, because the systems are different; here is often a FFS and there, it is more socialized, nationalized systems.
So, let’s say the actual cost of a THR is $16,000. The doc has to BILL Medicare nearly $25,000 to recoup his $16,000. Given the THR cost in France under a totally different system where the charge may be something like $8,000. $8,0000 vs $25000 is a no-brainer for someone who lacks insurance. Heck, I’d take a trip based on those circumstances. But, the comparisons aren’t real so what I’m charged isn’t real.
However, when you don’t have insurance or insurance doesn’t cover what you’re having done, the $ 8,000 vs. $ 25,000 is VERY real. If physicians are going to continue to accept Medicare patients, they must accept what Medicare gives them (accepting assignment). Physicians fight for an increase in that rate (67 cents on the dollar-or I’m sure it’s less by now) but until they get what they need to keep afloat, they’ll have to continue overbilling.
The reason he’s likely excited is Joan is the majority of orthopedic surgeons in the United States derive the majority of their supplemental income from: Joint replacement. Yep, joint replacement! So while you have the interest in preserving your native structure, what you were born with–he’s interested in making some dough to take his kids to Disney Land! It’s a travesty. It’s a conflict of interest. One has the interest of selling a joint replacement which seems like a “gold standard” treatment. The reason it’s referred to as gold standard is because that’s where the gold’s at! It’s not science, it’s psuedoscience. It’s money-science. That’s what it is.
I recommend you find his address and leaving a flaming pile of doo-doo on his doorstep. Hopefully it will result in him needing joint replacement.
Beauty Bob! I couldn’t agree more!
I saw a real AVN expert orthopedist today who also does joint work on : hips, knees, shoulders, and the pelvis. He viewed my May 2012 ex-rays taken post stem cell operation on knees and hips and he said everything looks great. There is a tiny nick in the pelvis that probably happened in surgery but it means nothing. There is absolutely no “new lesion” on the left knee which a radiologist mistakenly thought. . As for “pelvic pain” I have been having, he said that could be anything and means nothing. So I am very glad I had stem cell surgery now on hips and knees and will be very busy from now on arranging stem cell surgery for my shoulder this summer/fall! I will also never ever again have MRI’s or ex-rays at just one of these companies. Obviously they are not skilled enough to view orthopedic type problems like AVN. This doctor was American and not pro stem cells I should add. I never pay attention to anything they say that is anti stem cells (bone marrow concentrate aspirate procedure!) because I believe in regenerative medicine!
Joan,
That’s great news!! I’m so happy for you!!!!!!
Thank you, Cassandra! I just hope to keep avoiding joint replacements as long as possible. They are a good thing, if one reaches the stage there is no alternative to them. However, 5 is an overwhelming number at my age (I’m now 63) and each day I avoid them I feel blessed nor do I take such a day for granted. I hope things are getting better for you, Cassandra. I will read with interest your progress with AVN and the anticlotting issues that you have been such a great voice broadcasting about. Of course if I learn anything new that I can contribute I will post it. Did I ever give you Dr. Hernigou of Creteil, France’s contact information? It is:
Phillippe Hernigou, Professor
Groupe Hospitalier Henri Mondor
Service d’ Orthopedie
51 av. Du mal. De Lattre de Tassigny
94010 Creteil Cedex, France
France
Zip code 94000
Phone : 011.33.1.49.81.26.01
Email : phillipe.hernigou@hmn.ap-hop-paris.fr
Good news indeed! I would encourage you to get in an appointment with Dr. Centeno of regenexx. I have been seeing him for a few years now for a bad neck causing vertigo and migraines and then I was dx with avn and he offered his trreatment at a cost of about $6500. Per joint. I do not know your France doc or what his procedure is exactly. Does he culture the cells? Or is it a simple 30 min spin down kit and re inject? If so regenexx would accomplish the same thing with out overseas travel. Anyways its food for thought. Also with regard to your post abt that jerk ortho who wanted to do replacements on you. I had a similar story when first diagnosed. My first ortho was more frustrated by my dx of avn. He is a very nice doc and very attentive and caring, but I could see his frustration when looking at my MRI. He talked of core decomp and said its not very successful, he basically told me there’s not a good treatment option. I asked him about stem cells and he got visibly upset and started talking about how there’s no evidence that stem cells work. Well, he is wrong. There is a lot of evidence that stem cells DO WORK. But this was a perfect example of an old school ortho who knows what he knows and that’s joint replacement. He was also not up to date with AVN. Which many docs aren’t. I guess moral of story is, don’t settle, ever, until you find the right doc for the job, until you are happy with the treatment u receive. Anyways, glad to hear you have no more spreading. Neither do I ! And I’m finally off crutches and back in the gym. Time to get strong and get my life back! Continued luck as always to u and everyone else on here. Fight fight fight
Here’s that proof I was talking about.. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2739495/
Correction: The ex-rays that supposedly showed problems were taken May 2013 not May 2012.
Bob, one thing I am noticing in orthopedist offices is how easy it is compared to 2 1/2 years ago to get appointments with top doctors! The same with the one from a week ago who told me my whole body was “ruined” and “destroyed”. What kind of a doctor tells a patient things like this? What was his purpose since it is not true? Now, could It happen if a patient just went anywhere in the world and saw just anyone for “stem cells”? Maybe it could. I knew I was seeing a fine doctor and in a wonderful advanced country and I had the bone marrow aspirate concentrate procedure. I did not take chances but all new experimental surgery is risky. (I’d probably not be so up if I had some horrid infection or something!) However, my personal belief is in regenerative medicine and I was willing to take the risk. To me it is the future and having AVN in 5 joints is no picnic! Now, if I were younger maybe I’d play it safer (or not as I don’t like having AVN in any joint let alone 5!) I do not think any doctor but the exceptional knows how horrific it is to be told you have five joints with AVN and will probably need 5 joint replacements! My belief about doctor’s free time is probably people in the USA cannot even afford joint replacements.
James, Dr. Philippe Hernigou’s procedure is written up in medical articles and published in pubmed. He took bone marrow stem cells from both pelvic bones and you are in the operating area for 1 1/2 to 2 hours and the stem cells are reinjected back into your body in that timeframe. I was on Fosamax from April 1, 2012 and when I saw Dr. Hernigou in September 2012 he said to discontinue it December 1, 2012 which I did. I later asked him about whether it affects stem cells and he said we do not know. I found him totally honest about his procedure, e.g., when I first met him he said about my lesions in hips which were almost 2 years old that, if the procedure works the way it is supposed to work, he would not expect my “old” lesions to recede but the disease not to progress. Any orthopedist in America who is not familiar with who Dr. Hernigou knows nothing about stem cells for AVN. His name is in many footnotes of medical articles regarding the use of stem cells. What procedure he uses though on the stem cells before they are placed back into the body I would say one would have to understand that through his medical articles. The top notch orthopedist I saw this past week who viewed in the same room with me my ex-rays! (how rare indeed that is) told me Dr. Hernigou has used a variety of procedures over the years and that others do not seem to get the success rate Dr. Hernigou achieves. I asked that doctor (who did not seem enthusiastic about stem cells) why then is Dr. Thomas Einhorn in Boston studying them? And he said Dr. Einhorn is a “researcher” and we will have to see what his results show at the conclusion of his study. So my view of Regenexx is with the reservations of that discussion. I am so glad your AVN is not progressing! I personally have changed my diet to keep fats at a minimum. I keep researching things I can do and change to avoid any more AVN.
Yes I actually read up on one of Dr. Heringou clinical studies involving 534 hips. I posted the link above. He got great results with 64 hips having total resolution of the lesions and an over 80% success rate. I read the procedure notes and he uses a verysimilar technique as Dr. Kelly. However, Dr. Kelly did not get as much final stem cell volume to re inject. In fact, according to the study Dr. Heringou re injects almost 3 times as much stem cell aspirate as Dr. Kelly did with me. Everything I have ever seen and read (which is extensive) says that the more stem cells introduced into the area the better chance of regrowth. I had a phone consult with Dr. Einhorn and the difference with his procedure is he uses a bigger core tract. He uses like a 6 mm trephine where as Dr Kelly and Dr heringou uses a 3 mm bore tract. I am a little concerned I didn’t receive enough stem cells in my hips. I will wait until MRI is done in 6 weeks to see what has taken place. I may go in for regenexx just to bolster the area with more cells. Dr. Centeno says he can reinject about 5 times the amount of cells I initially had. He also does not do a decompression. He simply uses the same needle he used to harvest the cells from the illiac crest to reinject into the femoral headThis also means less time on crutches-only 3-4 weekscompared to 6 woth a typical core decomp. I guess I’m a little pro regeneexx cause I’ve worked so closely with Dr centeno (regenexx founder) and we have a personal type relationship so I trust his expertise in the stem cell field. However, everything I’ve read is that Dr. Heringou is extremely experienced as well, in fact he’s been doing stem cells procedures since the early 90’s. At any rate like I said earlier, you’ve got to be comfortable with the guy sound the procedure and I’m sure you got the best of the best with Dr. Heringou.
I was diagnosed with AVN in my right arm, after having hip surgery for a torn labrum and some reshaping of my hip bone needed. I was on crutches going on my stairs when I insured my shoulder. The doctor gave me a cortisone in hopes to help the pain and wanted to wait and see because I had just had the hip surgery. Come to find out a few months later after mri and visiting with a bone oncologist because the questionable areas showed up, they diagnosed me with AVN, I don’t use sterioids, I’m not a heavy drinker, I don’t fit any criteria for the possible causes, I simply injured my arm and apparently cut the blood supply off to the bone. They wanted to put me on all sorts of meds. I do not take meds other than an aspirin from time to time, I never even used pain meds after hip surgery. What I have found most beneficial for my pain is whats called a Rejuvenation Bed, its simply a bed like a tanning bed but its red light only, no uv’s. I control my pain this way, 15 minutes every day. I highly recommend this to anyone who is suffering and in pain, it really does work, I pay about 70.00 a month for it, its just like a tanning membership. RED light therapy has been used by many doctors around the world, its just not huge in the US yet.
Hope this helps you as well!
Lori
Lori, that stinks. You probably got the AVN from the cortisone shot. After all cortisone is corticosteroids or steroids; a known AVN causer. Anyways, keep fighting. What stage are you? You should consider biphosphonates to prevent progression. After that I would recommend some of these new treatments people are talking about. Like stem cells and core decompression–I was reading it can actually heal the AVN region. Anyways best of luck.
Thank You, I will look into the light therapy
James, I just read your post. It is really informative to me what you post about stem cells. I do not know how you know these details! Please keep posting if anything more occurs to you. Surely the number of stem cells a doctor can insert may explain his or her success rate with stem cells, as long as the place one is getting them is safe and reputable! I do not know why a doctor would say to me I destroyed my body with stem cells. I would never knowingly do that or advocate that. I am still in shock with some statements made to me recently by doctors about stem cells.
am getting my records also from all 3 USA doctors seen/consulted recently. One really knows zero about one’s situation my experience is without one’s records–provided they took the time to dictate and have transcribed the consult. But then I am a cautious person now.
When I last posted it was on a positive note and that I needed to find some “peace” so I have been reading but not posting. However, I did tell you all I would post if something new occurred. First recall I am 63 and got stem cells knees & Hips not lon ago. I had also had holes drilled in bones in 2011 plus that orthopedist (who I think is a horror of a person) performed meniscus cutting. I was a dingbat who turned my body over to this “nationally known AVN expert” without double checking anything. Meniscus surgery invariably causes arthritis. Please look it up. No decent doctor would have cut the meniscus (small cut but lethal). My last ex-rays May 2, 2012 show new lesion on left femur and arthritis. I saw two doctors and sent the cd to my main USA doctor. One of the doctors said I “ruined my body” with stem cells and just mentioned arthritis behind my left knee cap (50% of it is dead) in passing. The 2nd well known AVN expert showed me on ex-ray the arthritis but did not focus on it much and said there was no new lesion. My USA doctor called me and said you have “severe” arthritis left knee; lesser right knee; a new lesion; and come for ex-rays early August. Now this USA doctor is the only of the other 2 who agreed to period ex-rays that the Doctor in France wants! So of course I’ll go. He also is negative: no stem cells work; all AVN collapses in 2 to 3 years; pushes prednisone injections; and is hot to do joint replacements on me. Still I’ll post when I get the new ex-rays. My hips still do not ache; my right shoulder (not treated with stem cells) still does not ache. I’m quiet now wondering what to do re shoulder. I am trying to get my French records. This is not easy! All American doctors were totally opposed to stem cells! You are all up to date except do I regret the expense and having stem cells? No, I know enough about my own AVN (extensive, extensive! in size and location of lesions) and AVN at my age to know I gave it my best shot.
Joan, I know u don’t believe in replacements, but shoulder replacement are very successful in the hands of a good OS. I’m just getting in car after swim class: had mine done a year ago at 60, so I’m not far behind . Annie
I just found your blog so I thought I’d write my story as well. It’s great to see others that are going through the same thing share their stories. My name is Alia and I’m 36 years old. I was diagnosed with Stage II-III AVN in the right hip and ON in both of my knees in August 2012. I had been having pain that was getting progressively worse but I thought it was my back (sciatic). I actually went to a chiropractor for my “sciatic” pain but by my second appointment she told me she doesn’t think I have sciatic problems, she thinks I have avascular necrosis. I had no idea what she was talking about but after a few x rays and MRI’s. . . she was right. I started seeing a pain management dr because the pain became unbearable. Within a few weeks, I was unable to walk without crutches. I couldn’t bear any weight on my right hip but even though both my knees had dead bones, the left knee was worse so walking at all became tricky! My pain management dr obviously sent me to see a few orthopedic surgeons but he encouraged me not to rush into surgery and to look into any possible alternatives before I went under the knife. I immediately saw a few orthopedic surgeons who both told my I would need THR ASAP. One of them gave me option of trying core decompression first but he admitted that my AVN was so far along that the chances of it working was slim. When I asked about non evasive options they pretty much laughed (one got upset) at me and told me that surgery was my only option. The AVN would not reverse itself. Even though this was effecting my whole family in many ways, I was determined to make sure there was no other way before I had surgery. I live with my fiancé and my girls who are 13 and 10. (They’ve been an amazing help to mom through this all!). Anyways, my AVN and ON was caused by prednisone which cut off the blood supply and my bones died. I figured I had blood supply there at one point in time. . . if I could just figure out how to regain the blood supply, my bones could heal themselves.
I started by laying on a Bio Mat. My sister had actually gotten the mat for my mom who has cancer but I started using it as well. The Bio Mat is a mat that uses far infrared heat, negative ions and amethyst crystals to heal. I know it might sound crazy (I thought it did) but I was desperate at that point and willing to try anything. You lay on the mat and can choose how high to set the temperature. It’s supposed to help with pain but the reason I was interested was because it was supposed to help with blood flow which is what I needed. I started with 30 minute sessions a few times a day and shortly after I was sleeping on it every night. My pain was significantly less and I could feel it doing something in my hip and my knees when I was on it. About a month later I started HBOT (hyperbaric oxygen treatments). I would lay in the oxygen chamber for 90 minutes each day and I completed 60 treatments The idea with this was also to increase blood flow. I also started physical therapy 3 times a week which killed me at first but the more I strengthened the muscles around the dead bones, the better it seemed to feel. I also started seeing an acupuncturist a few times a week for treatments and she also put me on herbs that are supposed to increase blood flow. All of this went on from about September to December of 2012. In late December I got some great news. A bone scan showed that there was nothing wrong with my knees anymore! It was crazy because you could clearly see the dead bones before, which in one spot was over two inches long. They were completely healed! The AVN in my hip did not show that it was completely healed but it did show that there was blood flow now which was a great sign! I kept praying that now it was just a matter of time before it heals completely. Since the beginning of the year I have just been doing as much as I can on the bio mat, exercising regularly (without bearing weight on my hip), continuing physical therapy and acupuncture. My insurance will not cover any more treatments (which makes no sense since I’ve gotten better) but the treatments are pricey so that’s on hold for now. I have good days and bad days (as I’m sure we all do) but for the most part, I know I’m getting better. I walk without crutches now which is a miracle in itself! I’m sorry if this is getting long and I will try to end it soon! There’s a little twist to this now. . . About 3 weeks ago, I found out I’m pregnant! I’m extremely excited and a little scared. I can’t find much online to prepare me for what to expect so i guess I’ll just have to wait and see. Oddly enough, my pain level has been significantly less since I’ve been pregnant. I doubt that will last as I get bigger (I’m only 7 weeks now) but I’m praying for another miracle! If anyone reading this is going through the same thing, I just encourage you to listen to your own body and your heart. Don’t let the doctors scare you. Believe in yourself (and pray). Our bodies can do amazing things!
Ala,
I just read your story. I’m on my way to bed and want to write more, but I just wanted to say how inspirational your story is to me! I will message again tomorrow. Thank you so much for sharing!
Cassandra
Ala, I just read your inspirational story.
I hope your pregnancy is going well. One thing I strongly urge you to consider,particularly because of the pregnancy, is to contact Dr.Gleuck. He will test you for all sorts of coagulation disorders, which, while pregnant ,could effect your bones. He can also help by recommending treatment if you test positive.
I was positive for anticardiolipin antibodiies. This causes miscarriages and I’ve never been pregnant. My husband and I were trying lately but I assumed I was too old, although my fertility workup was okay.
I don’t believe I’ve ever had a miscarriage. But,while you’re pregnant,you can also be at risk for DVT if you are positive for any of the coagulation tests that he has in his panel.
I am going to try the lovenox, in addition to the core decompression/stem cell surgery with Dr. Kelly.
If nothing else, it will greatly reduce my risk of DVTs while not getting much my risk of DVT.
Again, I love your story and hope the pregnancy is going well.
I am hoping you can help me. I have necrosis of the ankle. I live in Louisville Kentucky and need to find a specialist that does ankle replacements here in Louisville.
Thank you,
Becky
Can you speak with me. What is this mat? I was told that I have AVN in my left hip and I want to get pregnant. How did you get this mat? What do I have to do? I don’t want to go through surgery. Thank you. Erin
Hi Erin, I apologize for not answering sooner. I honestly wrote my story and never looked on here again until now. . . I’m really bad at this stuff!
Well a quick update. . . I did miscarry with the pregnancy I mentioned in my story but since then I have been blessed with 2 beautiful, healthy boys now 3 years and 20 months old. I was considered high risk both because of my hip and my age but the pregnancy’s went great and honestly I was in less pain when I was pregnant. The mat is called a “Bio Mat” and if you can’t find info online for how to get one, I can try to find it for you. I also really believe that the Hyperbaric Oxygen Treatments really helped and I would love to do more although I have not been able to get insurance to cover any additional treatments yet. I agree with you, I don’t want to have surgery and although many doctors told me it wasn’t possible, I have yet to have surgery 5 years after being diagnosed. Don’t get me wrong, I am certainly in pain but it’s something I have learned to manage and live with for now. I wish you the best of luck with everything!
Hi Ala Sapiro. I read your story and it gave me hope. Could you please give some references about the BIO Mat (where to buy a good one, brand, etc.). As for the HBOT, what should I consider when looking for a good clinic? I would also need more information about the physical therapy. Thank you very much for your help!
It is not that I “don’t believe in replacements” it is that to me the first line of defense for AVN is “treatment” unless the AVN is discovered at a very late stage! I have 5 joints with AVN and am in my 60s with other medical issues I do not care to share which worries me about whether I will survive five joints being replaced. If American doctors do not come up with a viable serious treatment plan for a patient like me, odds are some or all of those joints are going to require joint replacements. I personally saw 16 surgeons. A treatment plan such as I endured by one “AVN expert” of drilling holes into the joints (putting no stem cells or growth hormone into those joints) was absurd since I was told by him after that surgery his concept of “success of the surgery” was merely “pain relief” and it did not achieve that in me! I wish he had been upfront with that concept of “success” prior to surgery as I certainly would not have agreed to that surgery! Stem cells by the bone marrow aspirate concentrate procedure by a well known surgeon in a safe medical setting in France I hope will save the four joints it was done on or at least some of those joints. I intend to get stem cell surgery for my shoulder this fall even though the shoulder does not ache. My present finances and a personal situation prohibit my acting sooner. I hope that will save me from needing a joint replacement. I am glad that your joint replacement worked. Perhaps you should consider stem cells as an alternative in the future if you can afford them or have insurance to cover the procedure. Be sure to get them safely. There are other procedures offered American patients but since other procedures were never offered me, I cannot comment on them. I have no medical training and concentrate largely on stem cell surgery. Nobody has discussed graft surgery for my shoulder or any other joint. My interest in stem cells is from my personal research not on anything I was told by anyone on the Internet. I do not care what education a person on the Internet presumes to tell me they have, which I am not able to verify, but solely on reading medical articles in pubmed and other respected medical journals. But suggestions are what these forums are all about. I just worry about others who do not do the research I now do (from my bad first experience with an American orthopedist) that they know to do research, research and more research.
I want to briefly comment on hyperbaric oxygen treatments 60 or 90 treatments 2 hours at a time in a hard cased oxygen machine, I read at stage 1 and even stage 2 there are situations just as you describe of lesions disappearing or of no progression of AVN. On forums there is very little posted about it. Some postings are like yours; others negative. I am almost deaf in one ear and have hearing loss in right ear. In the spring of 2012 (my insurance did not cover it) I did start these treatments but because of a unique problem I have with “pressure” I got baratrauma and it was feared I had lost a lot of my hearing in my one hearing ear. I thank God this did not happen but those were long weeks waiting to see if my hearing could recover. I only did 4 treatments. All is a risk/benefit decision. I decided for me the hearing issue was huge and ruled out hyperbaric oxygen for me with my problems. However, I gave up hyperbaric oxygen very reluctantly indeed. Not one doctor mentioned it to me as an option. You who had success with this treatment have done many people a favor I am sure by sharing your story. I believe you.
Joan, I’d run from anyone who offered replacement before anything else;THAT IS, unless he could give me a darned good reason why that is the ONLY option, However, docs have their protocols (maybe insurance-driven) which require you to try ‘x’ then ‘y’ then ‘z’ and a few other things and then replacement, But, even then, the decision is yours to make. WHAT DO YOU THINK IS IN YOUR BEST INTEREST?
The days of Marcus Welby are long gone and not coming back. Those are the days of someone holding your hand and TELLING you what to do. More often than not, patients need to be their own advocates. Nurses do a ‘bang-up job’ when they can, docs office try, but nothing beats the patient who takes the wheel and steers with the guidance of the physician. From what I saw in 20+ years, was that the patient who researched (sure, left some stuff up to the doc), but took an active role in his care, was the patient who had the better outcome most of the time,
But, I digress. I think joint replacement for the right joint at the right time for the right diagnosis work. For example, my shoulder replacement, while there were an awful 2 months afterward, has left me with an itty bitty scar and nearly full range of motion and no patin, Replacements for ON of ball and socket joints do the best, They’re experimenting with a new INBONE (TM) ankle replacement. Ankle replacements are usually contraindicated in osteonecrosis. But this INBONE isn’t. I’m traveling to see a doc in Chicago to see my eligibility,
I think the bottom line, is not to be quick to rule things OUT as an option, because a physician didn’t offer them, For all I know, he might not have offered them because of my medical history or any of 1000 variables.
Most of the doctors I saw did in fact offer me joint replacements even at stage 1 and stage 2. This is happening all over America. Please read Ala’s post. I have run from many doctors. After my first awful experience by a so called “AVN expert” with these “holes drilled for pain relief” (not to mention needless butchery of meniscus surgery which always causes advanced arthritis within a sort time frame by said surgeon and in my opinion explains the arthritis in my knees as anyone who looks that surgery up will understand) I have researched my options thoroughly since that fateful day I put my life and well being in that doctor’s hands. I suggest everyone do the same or you will suffer the consequences. As for the INBONE ankle replacement, I do not have AVN in the ankle but hope you continue to post about this. There are other forums I am on where many people are suffering dreadfully from AVN in the ankle and two people have posted their only option they are weighing is amputation. I do not wish to alarm anyone as I do not know much about the ankle not having AVN there myself, but this is an alarming joint to get AVN in. People are having fusions and other surgeries not joint replacements of this joint. If I knew more about this treatment I surely would convey what I read so they can research it themselves. I am most sorry you have AVN in the ankle and I pray this new treatment works for you and everyone else!
Yep,, you don’t hear of many people having replacements for ON in their ankles; it’s actually contraindicated in ON ankle. There are CD and Dr. Lamm said he could do a core and fill it with human growth hormone and something else. I wish I’d taken him up on that when he offered a while back. Now, with full collapse, it’s too late (someone said full collapse, someone else said no).
There is one problem, other than the obvious structural/mechanical probe with fusion; WILL THE AREA REVASCULARIZE? If it doesn’t, you’re looking at amputation. With the INBONE replacement, I’m sure that’s a risk, but to a much milder degree. There are also a lot of medical history reasons that the surgoen needs to cover. Like, would I be a good candidate?
From my rudimentary understanding, the INBONE replacement, is like a regular joint replacement, but there are LONG STEMS ON EACH END. I so hope, I’m a candidate for the surgery, but I have a nagging question in my mind.
I, too, have considered amputation as a pain relief. But, with amputation comes a host of other problems related to immobility, skin care and emotional problems.
When you mentioned that 1/2 to mostly all of the OS you see, offer you a replacement right out of the gate, what went through my mind is that “WHO IS SHE SEEING?” There are times when a replacement is the best surgical option (I’m convinced for the shoulder it is). But, no doc worth his salt who knows about ON-pr at least SAYS he knows about ON, could REALLY know about ON if the first thing he’s offering is TKR or THR. Rest/PT/ viscosupplementation for any arthritis surrounding the joint.
Hey,
Recently my mom had a problem from her right knee. Then it turned into an avascular necrosis. We do not know what to do? The doctor only said to rest and it might be fine…I am desperate as her son…Please help.
This is a short story of her:
“I am having the same problem in my knee, bone marrow syndrome with a second recurring. Since last January 2013, I am having this problem. I had a surgery of the marrow is removed out cleanly, then after 3 months I was feeling better and started walking. Then it recurred again. (since recurrance, after 2 weeks I started to rest again.) Now I am having an avascular necrosis at my knee bones. Apart from the pain and disability of walking; I am really concerned about my dying bones. My doctor said, the marrow is moving through my bone and causing pains in different places this time. Also my bone is dying, so I have to rest and use the leg rest(under my arm pits) all the time for about 40 days.
My questions are:
1. is there any other treatment rather than just resting? Any extra care shall I need?
2. the dead bones, do they generally get alive and come back normal?
3. is there any food I should eat to rapid the reproduction of my bone cells to make it alive again?
4. what are my chances for a recovery? Am I gonna be better again? If yes, how long would it take generally?
5. I hope I do not need but, if I need a protesis, is that surgery a hard one and after the protesis, how my life is going to be limited and in what ways?
6. Other suggestions?
Regards,
Murat
Murat,
There are a lot of options.
Depending on the stage of the disease and what caused the disease there are various medical procedures that include: joint replacements, bone grafts, stem cell injections, core decompression, hyperbaric treatment, anti coagulation therapy.
Where do you live? How was your Mother diagnosed with avascular necrosis ( ie. MRI?) what stage is her disease at? How want orthopedic doctors have you visited so far?
There are several support groups on Facebook, yahoo groups and there is the Avascular Necrosis organization. I link off to all helpful sites on my homepage. Don’t panic. Take it a day at a time. There are answers out there and there is hope.
Cassandra
Hello,
Thanks for your prompt reply!
We have seen 2 doctors and had the second doctor for the surgery. He is on us now. He is good but we generally do not encounter this disease so there are not too many information.
We live in Ankara/Turkey. My mom is diagnosed after several tests and MRIs of course, yes. I do not know her stage but will try to find it out.
I have sent a mail to Mr. Glueck after your advises. Now also will see the rganization and facebook…
I would be happy if anybody would be willing to respond to my questions..
Thanks
Murat,
Has the current doctor recommended any type of surgery? Avascular Necrosis (AVN) is a rare condition. Only about 20,000 Americans a year are diagnosed with the condition. The AVN community is small. Everyone is very helpful. Ask as many questions as you like. Let me know if you are able to find the groups on Facebook.
I, obviously, don’t know how the healthcare system works in Turkey. It is important to find out at what stage her disease is and why the doctors think she developed it. You mentioned bone marrow. Did you Mother have bone cancer? Or a marrow transplant? I wasn’t sure. I know it must be so frustrating trying to communicate in a second language about something complicated. Most importantly you are not alone!
Cassandra
I could not find a “reply button” below so had to reply here, sorry.
He said, we have to wait 40 days to rest it and see if it can revasculate itself. After that, if nothing works, surgery is an option he says…
She had this bc of hitting or pushing too hard her legs. (all other results are fine). Or like yours, the reason is not found, but the blood tests are all normal.
I found the FB page and posted the same msg there. also some other docs too.
Thanks for your support!!
Hi Cassandra,
What is your advice after this point?
I found out today that the stage is 1…
I can not get reply from DR. Glueck…Would you mind helping me about this matter?
Hello everyone,
My mom had a problem with her knee, than turned out to be an avascular necrosis…Need your helps and advises. WE do not know what to do…Is it possible that the dead bones come alive again, somehow???
This is my moms short story and my questions…
I am having the same problem in my knee, bone marrow syndrome with a second recurring. Since last January 2013, I am having this problem. I had a surgery of the marrow is removed out cleanly, then after 3 months I was feeling better and started walking. Then it recurred again. (since recurrance, after 2 weeks I started to rest again.) Now I am having an avascular necrosis at my knee bones. Apart from the pain and disability of walking; I am really concerned about my dying bones. My doctor said, the marrow is moving through my bone and causing pains in different places this time. Also my bone is dying, so I have to rest and use the leg rest(under my arm pits) all the time for about 40 days.
My questions are:
1. is there any other treatment rather than just resting? Any extra care shall I need?
2. the dead bones, do they generally get alive and come back normal?
3. is there any food I should eat to rapid the reproduction of my bone cells to make it alive again?
4. what are my chances for a recovery? Am I gonna be better again? If yes, how long would it take generally?
5. I hope I do not need but, if I need a protesis, is that surgery a hard one and after the protesis, how my life is going to be limited and in what ways?
6. Other suggestions?
Best Regards
Murat
As you all know I’m scheduled for my second hip replacement on June 25th for my right hip. Recently I have been feeling pain on my right knee. Did anyone have knee pain due to AVN on their hip? I had a knee MRi done last November and my right knee looked fine. I’m a bit concerned reading about people having AVN in mutiple joints. I’m hoping I don’t have to replace every joint in my body. Any suggestions?
Jay,
Your knee pain could be due to a multitude of factors maybe none being AVN. If your hips joints are tight or your body is out of alignment you could have referred pain. Maybe because you’re due for a new replacement you’ve been putting more weight on your knees therefore causing: patella femoral syndrome, patella tendinitis, iliotibial band syndrome. Due to the AVN in my femurs I developed all of the above. I haven’t been walking properly in 20 months and one thing has lead to another.
It is, however, a valid concern that it could be AVN. As you said lots of people have it in more than one joint. I would, for peace of mind and because you have the right to know what’s going on in your body, have an MRI performed to make sure it isn’t indeed AVN.
I’ve had six MRIs over the course of my disease. Even though, as I said it was in my femurs, I’ve had an MRI of my hips performed every time along with my knees and femurs just to make sure my disease didn’t progress. I’m very lucky that it hasn’t.
Good luck with your upcoming surgery. Please share with us afterwards how you are. If you feel you want to, share what you decide to do about your knee. For now don’t worry until you have to cross that bridge.
Take Care, Cassandra
Very good info Cassandra about the knee pain. I would agree completely. I too had knee pain and I know how we all think, if there’s a new pain source is it new AVN? But what you said is really more likely. I have funny pains in my knees but I think its cause we walk different with hip pain, or we limp or somethings out of alignment. My only additional advicn top of Cassandras excellent advice would be to definitely get it checked out, but don’t worry until you know for sure. It’s just jot worth the emotional stress. Good luck indeed my friend.
Thanks Casandra and James for your advice and feedback. I’ll be in touch. Jay
The ITBB (ileo-tibial band) te muscle and tendon complex that involves from the hips and attaches at the knee, can become inflamed. Any number of things can happen, like over stretching the ITB to overuse tendonities, especially if you’re overcompensating because you”re having your surgery.
There’s a buch of physicians who recognize the importance of the ITV and will send you to a competent physical therapist for treatment. A good physical therapies will pick it out and be able to treat it:that is, if THAT is what if is, and that’s a likely possibility.
Cassandra, you are lucky you are getting that many MRI’s of multiple joints. I have excellent insurance but it must be age related because notwithstanding seeing 16 orthopedists in the USA I have only ever had 2 sets of MRI’s (one was the initial diagnosis and a year later MRI’s because of a mix up of a doctor’s secretary but I won’t go into those details). Oddly I got my first medical history report of a doctor I saw last month which I requested hoping to learn something about some recent ex-rays. My medical report Says nothing and most of what it says the facts are all wrong even though I typed a one page history for the doctor to read plus brought Mri’s, ex-rays, and radiologist reports. Orthopedists are very lazy.
As to Murat in Turkey, when I was diagnosed with AVN 2 1/2 years ago in hips, knees, and a shoulder I did do research on the Internet but typing in “avascular necrosis treatments” brings up millions of articles plus oddly the articles all read somewhat the same yet multiple USA doctors I was seeing were giving me 20 minutes of consults so I was learning nothing about my disease or treatments. I was also on forums like this but oddly that did not clarify what I sought: a complete knowledge an understanding of what was causing my AVN and what, if any, treatments there are.
Eventually I started reading pubmed and typing in “avascular necrosis” and reading as many abstracts as I could. I do not read articles on AVN of the jaws or about joint replacement surgery. At last I had enlightenment of a sort as to what the doctors know or do not know. However, all new treatments were not listed there. Some of them I learned of from forums like you are on and Cassandra listed.
On one forum I learned of a product that is put into bone infarcted knees. One lady in the USA has had this done but she lives far from me. Locally I recently asked 2 doctors I saw last month if I could get that product done on my bone infarcted knees (the product improves the success of artificial joints) and both of those USA surgeons said no. One said oh, that is only given for osteoporosis. The product is hydroset by manufacturer Stryker. This lady posted her knee replacement with all her bone infarcts “failed” and her doctor has now used this product and will try another knee replacement on her which hopefully will not fail.
I am not saying that this product is for your mother. What I am saying is one does have to research this avascular necrosis by reading medical articles supplemented by following forums to learn about treatments, cures, causes of AVN, success rates of treatments and so forth. It is an emotional topic avascular necrosis and in the beginning I couldn’t read about it but it is a progressive disease so one really has to make oneself try to understand it.
Jay,
Thanks for your concern. I also searched a lot and could not really find anything. Mostly everybody says there is no cure. I am trying to send mails to doctors who are knowledgable abt this matter. Hoping somebody to give me an answer. Searching all articles goes no where after some time…But luckily you found something out of that.
I found out that my mom’s stage is 1. The doctor only gave us rest with clutches. I do not know what else we should do, or this would be sufficient for her treatment. I really do not know what treatmens shall be used upon this stage. The doctors I reached are not willing to speak about it, they advice me to go to a doctor 🙂 it just makes me laugh sometimes…don’t understand it sometimes. When you need them they do not help.
Regards
Stage 1 is often treated with a core decompression where they drill holes in the bone to ‘decompress’ it or let the pressure out that causes the pain. Core decompression doesn’t CURE it, but at stage one, it can often be very helpful in treating the symptoms of ON.
The pressure is caused by the buildup of gases from necrotic debris that can’t escape through their normal channels, the bloodstream, because that is blocked/clottedI think the most successful core decompressions are those done with thing drills and they also do some debridement and ‘scooping out’ the necrotic debris they found outside the joint.
I just read an article about this last night; for all I know, it was an advertisement, but it stuck in my mind because it made sense.
I have not read or heard of marrow being “cleaned out.” It is very odd both you and your mother have avascular necrosis. Certain medicines cause AVN and illnesses. Certain genetic conditions such as blood clotting disorders can cause AVN and blood thinners are used. Cancer can cause AVN. Diabetes can cause AVN. But Turkey must have different procedures than USA as I have never heard of one’s marrow being cleaned out. How did they do that anyway? Surgically? ;I cannot imagine why they are cleaning out your marrow. Perhaps there is a valid reason but it is something I never encountered until now.
Treatments for AVN, well, there are stem cell treatments, hyperbaric oxygen treatments; the use of bone graft treatments.
I had holes drilled in all my joints in 2011 but no stem cells, grafts, or bone protein growth hormone was put into the holes so those holes were a very primative “core decompression” treatment. So I took my own money and went to Europe and ad the holes drilled again this past fall and this past winter and this time stem cells were put into the holes. Do your doctors not discuss stem cells? Core decompressions with bone grafts and or stem cells?
Hyperbaric oxygen is used largely in Europe with 90 treatments 2 hours each and the medical literature shows success at stage 1.
I have clotting problems but no doctor has treated that. I am planning myself to see a specialist hopefully next month to see if he will give me some anticlotting medicine but that is in USA and actually a long way from where I live as where I live nobody is interested in the clotting issue.
I’m in my 60’s and your post troubles me about your mother and yourself. I do hope someone more knowledgeable will post for you something hopeful for you to try. Doing nothing probably is not going to help you. I had doctors tell me that but I presume because of my age because the medical literature does not say the disease just is going to heal on its own.
There are some newer treatments in the below blog you can read about. Because my bones are “old bones” grafts and things like that I never focused on but you seem young and I am sure your mother is not that old either.
Read:..
http://avnanswers.blogspot.com/p/treatment-options.html
maybe I used a wrong statement. she had bone marrow syndrome and had a surgery. she is 59 almost same as you.
as said, doctor only gave rest. i think we need treatment but they only trust to this doctor, he is really good but we need a treatment i think.
Mike, it’s been quite a while so I doubt you are checking this. Just in case, a treatment that is semi-available (I’ve read in say PubMed) in Turkey is electrocorpeal shockwave therapy. Given your Mom is stage-1 and diagnosed! basically a miracle in regards to AVN, ESWT could reverse her condition if a favorable outcome is reached. There are a variety of PubMed (etc.) articles documented this–most of them published in Asia. You can check out my blog at avnanswers.blogspot.com (not spamming!). I did a lot of research on the topic and I think this condition is relatively un-understood in the orthopedic field. Anyways, there are lots of info all across the web–especially at this site (osteonecrosis.me) and other sites that could be of use to you.
I recommended: Electrocorpeal shockwave therapy (ask about it and research it……..), hyperbaric oxygen therapy, core decompression plus injection of bone marrow aspirate (stem cells). Those are good stage 1 treatments.
Bisphosphonates is also not a bad idea. She is 59 so pending she is going to live to 109 a short-term fix (like bisphosphonates) is not the worst idea.
Good things have been said about Forteo (technically I think it’s injectable so more expensive than bisphosphonates) but it actually promotes bone growth unlike BP’s.
Cartilage repair techniques are best used (ACI, etc.) when collapse has basically happened.
Inter-articular HGH could work but I wouldn’t’ recommend that until like say stage 3 or if you were rich or in the US or an HGH pusher! haha.
There are a lot of options but you probably won’t hear about them at the doctors office (sorry to say!). You will probably hear, joint replacement or wait or core decompression or maybe bone graft.
There are a lot more and a lot more promising treatments. Given you are in Turkey, I recommended Electrocorpeal shockwave therapy. I once read a paper done by some doctors from there (on successful treatment of this there).
Best of luck!
Murat, I think I understood what you’re saying. You don’t have this, only your mother. It sounds like she had core decompression with bone marrow/stem cell injections and then it started to come back. Am I getting this right? And she’s told to use crutches to keep the weight off the knee?
I can give you my email address if that would be easier.
I’m also a Family Physician so maybe I can help a little.
For bone growth some doctors try Bisphosphonates. I was on one called Fosamax for 8 months but the French doctor I saw for stem cells (Dr. Philippe Hernigou Henri Mondor Hospital) told me not to continue to take that medicine designed for osteoporosis (it can cause jaw AVN too) as it might interfere with the stem cells. Some doctors have tried a different type of medicine to grow bone called Forteo (forces bone growth via the parathyroid. I tried to get that drug myself but it is very costly and I did not get it. This is a rare disease and hard to treat. Financially I am limited now myself. I have heard in the far east of shock wave therapy but I could not afford that trip nor the treatment. I hope someone posts something useful for you.
I just had my pain doctor write me for Forteo and he’s getting me a sample pack from another office.
He’ll need to do a prior authorization for my insurance but I think he’ll get it done.
I found the below information on bone marrow syndrome. I have been reading about AVN for 2 1/2 years now but do not recall a poster on a forum discussing having this. Sorry I misunderstood your original post. It is not you but your mother who has this AVN seemingly associated with bone marrow failure. Well, my funds were limited and I went to France to see Dr. Philippe Hernigou of Henri Mondor Hospital for stem cell treatment but it cost me $12,000 per surgery: 1 surgery for hips and 1 for knees was 2 surgeries. Whether other treatments would be better I do not know such as hyperbaric oxygen or shock waves. I was not being offered bone grafts or any type of treatment or hope by USA doctors. Also a lot of doctors were pushing joint replacements on me which was because of being 61 at the time of diagnosis. I had to leave America to get treatment to try to save the joints! I hope she does not run into that kind of attitude in Turkey and I do not know if you are prepared to leave Turkey to seek treatment. I have asked Cassandra, who runs this blog, to list Dr. Hernigou’s contact on the front page with the other doctors but I do not see that as happening yet. One can just send him one’s MRI’s and he will email one about whether stem cells are possible. I do not advocate stem cells as a “cure”. One can read his “success” by just typing is name and pull up many articles he has written. Contact philippe.hernigou@hmn.aphp.fr. I cannot say the stem cells cured my left knee as it still aches and has noted arthritis. I do hope it saves my hips and right knee from collapse in the future. I hope others who tried more than just stem cells post for your mother’s sake. She has my prayers.
“Inherited bone marrow failure syndromes (IBMFS) are rare disorders in which there is usually some form of aplastic anemia (failure of the bone marrow to produce blood), associated with a family history of the same disorder. Some of these conditions have typical changes in physical appearance or in laboratory findings which suggest a specific diagnosis. There are several well-described syndromes, which can be recognized by health care experts. There are also patients who are harder to classify, but who appear to belong in this category.”
1. is there any other treatment rather than just resting? Any extra care shall I need?
There have been 5 or 6 studies whether non weight bearing returns the bones to normal. My reading of the studies is it will not with time heal the bones. However, does non weight bearing (like resting) slow the collapse down? Yes, I have been hanging around my apartment for 2 1/2 years and my hips and knees have not collapsed. This is my personal opinion. Dead bone micro fractures after so much load bearing. If one is not running around as “normal person” one is simply not stressing the dead bones that much. The down side is boredom and also inactivity causes less blood circulation which may cause more AVN. Inactivity has overall negative effect on one’s total health. But I am in no hurry to rush 5 joint replacements. Perhaps she could do yoga or some non weight bearing activity. They suggest swimming but that is often unrealistic. Even lying on a bed doing bicycling movements in the air (non weight bearing) would get the blood moving. People get AVN from being bed bound!
2. the dead bones, do they generally get alive and come back normal?
No. Tiny lesions yes can heal and disappear but not large lesions. I read of a Chinese swimmer of 15 years old who got a small lesion in left shoulder. At 5 month mark of this being noted, her body began to heal. It took 2 years but that small lesion disappeared. This article is in pubmed. Doctors told me, too, go home and see if it will “heal” so at stage 1 but that advice meant I was missing chances to get treated at a reversible stage of AVN. Sadly I took their advice. Now I am stage 2. My lesions are large and many lesions.
3. is there any food I should eat to rapid the reproduction of my bone cells to make it alive again?
calcium and vitamin D. A wholesome diet. Obseity can cause AVN and fats in the blood. These and other diet changes affect bone health. But avascular necrosis of the bone means those “lesions” are dead areas with no blood flow to those areas to grow new bone. Most AVN requires some type of medical intervention unless it is minor lesions. Minor lesions can exist and not collapse the joints. I have lesions on the tibia leg bone for instance that probably will not collapse my knees. The lesions in the condyles of the knees probably will! The AVN is in the subchondral bone of both femurs of both knees. That type of AVN is more dangerous than a lesion further down the lower leg or further up the femur.
4. what are my chances for a recovery? Am I gonna be better again? If yes, how long would it take generally?
I read Dr. Philippe Hernigou wrote AVN is a five year disease. Doctors in America generally tell me my joints will collapse in 2 to 3 years which is the natural course of the disease and some said 85% do and 15% do not. However, last month one “AVN expert” told me if they have not collapsed in 2 years, they most likely will not collapse! This is the first time someone presented this scenario to me. He rushed me in and out so quickly from his office he wasn’t even paying attention when I said yes, but I non weight bear so that may be why I am able to delay collapse to this 2 1/2 timeframe.
There are medications being used on an experimental basis to ‘grow bone” that I already mentioned. These medications can have serious side effects. One must know those side effects to decide whether to take them.
5. I hope I do not need but, if I need a knee replacement, is that surgery a hard one and after the protesis, how my life is going to be limited and in what ways?
I have not had joint replacements. My concern with my knees is there are so very many lesions. A doctor in a famous hospital in America wrote me most of my many lesions must remain even after knee replacement surgery. I tried to pin down USA doctors how will you handle so many lesions? They were evasive. One said “grafts”; one said “cement”; one replied with a very confusing response about long stems being used. This gets me back to what I posted to you previously that I wanted to ask about putting a product called hydroset into the lesions to fill in those holes but 2 of the surgeons would not give me a reasonable reason why not? I do hope my stem cells builds some bone so that even if the joint itself goes down with arthritis and lack of cartilage, the bone is built up enough so there are not all these basically “holes” “soft spots” and is strong.
6. Other suggestions
Research as much as you can. It helps to make wise choices to understand AVN plus bone marrow failure. I do not have AVN because of bone marrow failure. I know it was a variety of factors that gave it to me. Right now I have an ex-ray that is in dispute of my left knee: 1 doctor says there is a “new lesion” high up the left femur (not where stem cells were injected); 1 says it does not exist; 1 says it does exist (but he is notorious for not reading ex-rays or MRI’s). More AVN. This worries me who has not had joint replacements. What happens to us who get more AVN “after’ we have joint replacements?
I am a non medical person with AVN of a certain age in a certain country. AVN is variable so one is left with a lot of decisions on one’s own. I have not found American doctors helpful in “treating” the AVN. Your mother is stage 1 a “reversible of the AVN” stage. I am bothered she is being told nothing can help. I hope you check out other forums as well on the Internet.
Annie,
That’s what I had done, my doctor drilled holes and then went in and scooped out all the dead stuff and replaced it with bone graph. I still have pain but it’s almost been 2 years and my hips look great.
Fatih,
What was the name of your doctor and which hospital?
Thanks.
Dr. Quanjuan Cui at University of Virginia
I personally saw this doctor two times and he did not offer to do one thing for me except joint replacements. He was one of the 15 American doctors I saw! I hope you do contact him Murat and if you can let us know if helps your mother who does have less joints involved than I have. Perhaps he will. I would be very interested.
BRIEF UPDATE ON TALAR (ankle) ON: I consulted with a fellow in Vail, Colorado who referred me to a Dr. Steven Haddad outside Chicago. This AM I heard from Dr. Haddad’s office saying that Dr. Haddad could do something; so keep my appointment to see him. He’d like a CT of my ankles prior to my appointment.
I’m walking on cloud 9 right now. SOMEONE MAY BE ABLE TO HELP!! I don’t expect a cure, but the fact that there is someone, one of the top 23 food/ankle OS in the country, who says that something can be done, puts me right up on that cloud!!
Annie
I am so happy for you. If I get it in the ankle, I have a name of a doctor who possibly could help.
Annie, my basic problem now is my left knee. To the extent I understand the problem I have arthritis behind the left knee cap and diminished cartilage and a full cartilage defect. My left knee cap is 50% dead with AVN. I believe this dead bone has set up an inflammatory response of auto immune nature (I have had auto immune issues decades ago). I know when I go see a certain doctor in August for more ex-rays I will get the hard sell on total knee replacement not a partial knee replacement and he will discuss nothing else! I do and always have respected your knowledge of AVN and research skills.
Have you heard of any new things they are doing for missing cartilage?
I know I read a story about Regenexx in Denver using stem cells injections into a young diver’s kneecap that is partially dead from trauma. Regenexx also uses stem cells for osteoarthritis. There is actually a Regenexx in my town opened within the last two years about 1/2 hour drive from me. But research as I do, I see nothing to indicate (as of current research) that cartilage can be regrown from stem cells! There are other surgical procedures involving cartilage in attempts to fix it but I fear because of my age (soon to be 64) it will be the same deadend attempts I have had for 2 1/2 years in the USA, namely, the surgeons want to do the joint replacements and nothing short of that do they want to do on me.
What’s the current situation about fixing cartilage?
Joan, I thought of you when I read the top article at this link:
http://scienceindex.com/stories/3010996/Does_infrapatellar_fat_pad_resection_in_total_knee_arthroplasty_impair_clinical_outcome_A_systematic_review.html
As far as cartilage goes, I don’t know about new, but there are viscosupplementation treatments: supartz, orthovisc, syndics. Synvisc is well known, I think, for it’s effectiveness on the knee cartilage area; like if you’re next to bone on bone, it makes that remaining cartilage a bit more spongy. I don’t know if if can REPAIR cartilage, but it is a treatment and works. Again, not a cure for ON, but a treatment when there’s not much cartilage separating the tibia and femur.
It’s common to have arthritis in the knee and for a TKR to help that immensely, because if the bones of the knee aren’t there (i.e TKR) there can be no pain from the arthritis. Sometimes in a TKR, they leave the kneecap intact (and I think that is most of the times), but, beyond that, my sources for info have dried up. (one was an orthopedic PA, but she’s got her hands full with colon CA).
By, the way, I’m still on cloud 9 about my ankle ON and thanks for your good wishes. Annie
Because I have trashed my “core decompressions” (they were just holes!) so often, in balance there is a 2013 article in pubmed seemingly showing some good statistics about the procedure:
http://www.ncbi.nlm.nih.gov/pubmed/23725928
I have ON i both knees a ankles. Stage 4 in both ankles with 100% collapse and no movement in my R ankle. 50-75% collapse in my L ankle and L knee and limited movement and 25%+ collapse in my R knee. My left knee also has a tear in the miniscus that has not been repaired and has most likely gotten worse in the 2 years since my diagnosis (I have an appt Tue June 11th with the OS re this). I am on 60mg dose of morphine 2x a day, 30mg morphine once, 71/2mg oxycodone 4x a day, cymbalta, and nortriptyline. I had complained for more then 10 years of pain, of feeling like glass was in my joints grinding. Blood tests and xrays and the repeated diagnosis of arthritis. By the time I was diagnosed I had 100% collapse in my R ankle and 2 Dr’s and the team of OS at the University of Washington Medical Center all saying there was nothing they could do except amputation. It’s to late for fusion or anything else. In fact, as the bone continues to micro-facture and bone break off I could have the bone break and rupture the skin requiring the amputation.
I am now 48 and contiplating having the amputation. One, so I wont require the pain meds and two, so maybe I can have some repair work done to my knees. Right now my ankles are so bad I wouldn’t be able to do the rehab needed after a knee replacement which is why they wont do anything now.
That’s my long story! So if I rambled
*sorry if I rambled
Don’t worry you can ramble all you like!
Rolene, I don’t know Where you live, but there’s a page on google (or Dr. Google, as I call the SEO) entitled the “23 top foot/ankle OS.” I’d check it out. Also, I’ve heard great things about Dr. John Reach at Yale, I saw Dr. Clanton of the Steadman Clinic in Vail, CO who referred me to Dr. Steven Haddad outside of Chicago or Dr. DeOrio of Duke. Those fellows have strengths in various areas.
What I like about that list is that they give a bio of each one. None of them says specifically, “treats stage 4 ON” but I was pointed to this list by Dr. Clanton. If you can avail yourself of these men, even to get a referral to someone else, it’s a starting point.
One person who is not on the list, and I;d feel comfortable with is Dr. Bradley Lamm, Dr. Mont’s partner. These guys pride themselves on conquering the tough stuff and are definitely on the cutting edge. Also, I wouldn’t rule out a GOOD, forward thinking, progressive podiatrist, One did a very innovative procedure on my heel ON and it did it’s job.
Check all the options before you consider amputation, which while it WILL RELIEVE THE ON PAIN, carries with it a lifetime of potential problems to which there’s not always an easy fix.
There’s also an ankle doctor at the Colorado Limb Consultants. I can’t remember the ankle doctor’s name but Dr.Kelly mentioned him when I was there. He’s on their website, I’m sure.
Rolene, if I were you I would at least contact that doctor Annnie mentioned sending a brief paragraph about the situation and your MRI’s. You have nothing to lose. I have been to a couple of state university hospitals and they never did anything for AVN in any of my 5 joints even though some were stage 1 at the time. I begin to question how innovative these state universities are! assuming insurance covers it of course. I hope you get more responses here on this blog.
Thank you, Annie. I am going to look into this cartilage information and do some more search as well (sigh!) Again, this is good news for you about the ankle replacements. Please keep posting information how it goes.
Joan, I’m not sure if what Im looking at is ankle replacements,but maybe that is what the ortho will think is the best option. My appointment is in less than a month, so please keep me in prayers. He has seen my films and feels that he can help.
There’s another foot/ankle specialist at Duke, I think Michael deOrio. He studied under Dr. Easly and Nunn
I am 31 year old with AVN in both knees, diagnosed almost 3 years ago. I found out I was pregnant around thanksgiving 2011 and was in pain management as well as seeing dr. Glueck monthly because he seems to be the only MD in the area that understands this disorder. Honestly if it was not for Dr Glueck I am not sure if my son would be turning 1 in less than a month. During pregnancy my knees and pain got extremely bad; about 3 months after I had my son my knees were feeling GREAT! Better than they had in over a year, that lasted till about a month ago. I stretched my leg in middle of the night and the popping and grinding and extreme pain woke me. It has been extremely hard to put weight on that leg since that night. I have apt in 2 wks to see Dr Glueck but feel I need MRI or X-rays now to see what is going on and he would have those text results at time of my apt!
The “free article” is not availablet yet but below describes how the Mayo Clinic is treating hip avascular necrosis:
http://www.ncbi.nlm.nih.gov/pubmed/23771751
I am 37 and was just diagnosed with osteonecrosis of the right hip. Funny thing is,my 13 year old son had surgery 4 years ago (on his right hip) because of leg-calve-perthes .i think there’s a connection . Genetic?
Hi Everyone,
I had my second hip replacement last month on June 25th. My recovery has been much better than last year. I think since I waited so long (almost 5 months) to replace my left hip, my left leg had lost most of it’s strength and it took me a while to put pressure and build up the muscles again. This time around I had my surgery way before my hip collapsed and I was able to walk much faster than the first surgery. I was on my walker for 4 days, used my cane for 6 additional days and I have been going to outpatient physical therapy for the past 20 days. I even stopped taking my pain meds after 2 weeks.
I feel so much better and I am grateful that my recovery has been so smooth so far. I still walk with a minor limp, but I’m going to physical therapy 3 times a week with hopes that I can walk normally in the next 2 to 3 weeks.
I will write again soon to let everyone know about my progress.
Jay
To Terri, I have read people on other forums discuss Perthes and it is hereditary I gather from their posts. I am updating where I stand with AVN of 5 joints having had stem cells in hips October 9, 2012; in knees January 1, 2013 by Dr. Philippe Hernigou in France. The hips still do not ache and were not aching prior to surgery. The right knee is not aching. The left knee ached from when I got AVN 2 1/2 years ago at 61. It has now major arthritic changes (or not depending on which doctor I talk to). However, as of the beginning of July 2013 the pain is very lessened. I hope it continues to improve. I got MRI’s the beginning of the month of feet and I do not have AVN in the feet. I do have a lot of “changes” but will see the doctor soon to discuss the tendon tears, etc. and for evaluation. I still have a right shoulder to get stem cells in. Doctors in USA tell me not to at my age re risk/benefit. However, the Mayo Clinic article I cited above on this page seems to indicate stem cells do have favorable outcomes for many with AVN. I’m going to get surgery for my shoulder soon. (If your insurance does not cover stem cells, I personally felt the cost to go to France in 2 separate operations to get 4 joints done with stem cells was extremely reasonable! USA doctors just were not interested in me because I was 61 1/2 when I got AVN and got it in 5 joints! Sitting around waiting for joint after joint to be replaced was not an option for me!)
Joan, you know where I stand with shoulder replacements. Other than the first 3 weeks after surgery (where I learned to live within my functional limits), there was daily progress after mine. I now use the shoulder the way I used to and the EXCRUTIATING pain is a distant memory. I was 60 when I had surgery and had/have a pretty complicated medical and surgical history as you know. I know others (one 60) who have had replacments recently and in the hands of , someone who does shoulders OFTEN, they’re sucessful because of the ball/socket nature of the joint.
I have serious scuba diving friends, who do technical,deep and exploratory cave dives and are world renowned in the diving world who have had one or both shoulders and sometimes other joints replaced due to dysbaric osteonecrosis. Usually shoulders seem to be the most common joint in scuba diving.
They are back to diving in 6 months, in a major way, 200-300 feet deep, with hours of decompression. They are hauling lots of heavy tanks and even manipulating valves behind their heads.
It’s amazing how their lives are back to normal,once the joint is repaired.
Personally, if my knees get to that point, I’ll be glad to get it over with as quickly as possible so that I can get back to my normal life, back on my feet, back to scuba diving and away from chronic pain.
I was diagnosed with both knees and small spots on both ankles in March of 2013, probably from steroids given a few years ago, combined with anticardiolipin antibodies. This may have been complicated by some scuba diving but I believe that my necrosis was already starting, because I was having some knee pain in the weeks leading up to going diving. It just got much worse right after I went diving.
I also had a major inflammatory response, with a terrible synovitis in both hips and something in my elbow, which has finally settled down. Has anybody else experienced something like this?
Tracy; in theory, I think it only needs to take oe case of”th bends”toform aa nitrogen clot to obstruct blood flow to the bones enough to cause necrosis;nobody did and made me the medical guru, but i should think it possible…
The free article I cited above in pubmed by the Mayo Clinic and their successful use of stem cells is now available not just the abstract. I encourage everyone to read it. I am very enthused.