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) 
When I went to see the specialist at UVA my left hip had already started to collapse so he said I only have a 50% chance my left side would take. Yes now I’m in a waiting game I actually went to see my doctor today because I’m in so much pain and his only solution is to give me a steroid shot to hold off the pain and hold me off on a hip replacement. I’ve never heard of the stem cell what is that?
Whoa! your doc is giving you a steroid shot for ON pain!? he’s clearly not up on his education with ON (osteonecrosis) the steroid will help for bout 3 months but in the end you will do more damage and possibly cause more ON! I will never ever consume any type of steroid again! it destroys cells! Some docs are taking stem cells from your own bone marrow and concentrate them down then reinjectem into the necrotic zone. There are some limited succes stories out there, but worth a try I think to keep your own “parts” as long as possible …..stay away from steroids you will only regress with that poison
That’s what I was afraid of, he kept telling me it was ok because it wasn’t going directly into the bone. I thought about looking into that do you know how much something like that would cost?
I just had the stem cell procedure done by Doctor Joseph Lane in New York. The only other doctor I found doing the procedure in the U.S. is Doctor Einhorn in Boston. Both Dr. Lane and Dr. Einhorn trained under Dr. Hernigou in France. Doctor Lane’s doctors fee is $13,500 (per hip), plus anesthesia and other hospital fees. The cost in the end will depend on your insurance. Their office does not affiliate with most insurances, but they still file everything with your insurance for you. I just had the procedure 3 weeks ago, but can not tell a difference yet. I have a follow up appointment to get MRIs done the first week of April. Good luck. Let me know if you have any more questions I can answer.
Oh wow, I don’t think I’ll ever be able to afford that. Do you have to go back for MRIs every so often? Please keep me updated as to if it has helped you or not becuse it may be worth all the money if it works. I’m worried because my left hip had already started to collapse before my core decompression would I still be able to have it done?
If you have already had a core decompression without stem cells, I do not believe you can have the procedure with Dr. Lane or Einhorn, but you could send them your records and see what they say before you go all the way there. Dr. Lane said I could have my MRIs done and sent there if I couldn’t travel there again since I have been going there from Georgia. I have been very fortunate and have two great insurances though, and one of them is reimbursing me for travel expenses. My right hip already had started to collapse before I had the procedure done, but I was given a 83% chance that the procedure would be successful on my left hip and 33% chance that it would be successful on my right hip. (Successful meaning that it would keep me from needing a hip replacement for at least 7 years – most likely longer than that, but they have not been doing it long enough to see results past the first 7 years)
Mallory, I’m curious how you are doing? Wondering if you had an MRI and what the results were? Thanks for sharing…
Hi Mallory.. I fell & fractured my hip last July 2013. Had a rod & pins but in at a diff. nyc hospital as emergency surgery. was then sent to a rehab and had very mild P/T. I thought I was getting better..I was only walking with a walker..and pain was there..but was tolorable with pain meds..now its’ Oct. and pain has increased a lot !! 24/7 in pain !! I saw Dr, Lane recently & he wants to perform the Hernigou procedure on me..I dont have much more time to decide on it..since I am nearing the 6 month window after the original surgery. Can U give me some insight ? did your pain lesson since ? Looking forward to hearing back from you..thanks ..I am so glad that i just found U.. been researching this all week…. Susan
Hi Mallory.. I had the Hernigou Procedure done by Dr. J. Lane in Dec.2013. He is a GREAT DOCTOR..& So far…I am glad I did it as well..My left hip was fractured do to a fall..& I already had osteoporosis at that time. As of Feb. 2014 the bone has grown 27%..!! yeah.. I go back in April..I get xrays each time I see him..I an anxious to know if the bone is still growing? I wanted to know how U are now?? It’s now 2014 A year after U had it done..Please let me know..would appreciate hearing back from U..Thanks.Susan p.s I had a rod & pins put in as emergency surgery @ a different hospital after the fall..
It doesn’t matter if it goes in the bone or not! He’s crazy! I took a extremely low dose inhaledsteroid that caused my ON….
The treatment costs $6500.00 through Dr. Centeno. Just google his name and you’ll find his website or search “regenexx”
James, I don’t want to start an argument, but HOW do you know for sure that it was the inhaled steroid that caused the ON? Since there are so many direct and indirect causes, a good number of them not having any definitive blood test, my feeling is that you can only say that something caused your ON and; there’s a high suspicion that inhaled steroids were the cause.
http://adult-stem-cell-hip-surgery.com/flv/einhorn-fox/einhorn-fox.html
Here is a link to a news broadcast that shows Dr. Einhorn and Lane’s procedure. I have been in contact with Tim Lammers who is featured in the story. He said he is happy he had the surgery, but he still has pain when he does certain things. This might give you a better idea of the procedure though.
Oh wow, then I’m gonna have to find another solution and I don’t think I can afford those treatments
I had a core decomp with Dr. Cynthia Kelly in Denver. she did a bone marrow aspirate with stem cells after the decompression. This is the same exact procedurhat Dr. Einhorn does. My insurance paid ALL OF IT! Call her office and see what they say, see if your a candidate. She works with insurance companies all you Will have to be responsible for is your deductable
http://thedenverclinic.com/services/avascular/
James, could you share what insurance you have? Trying to find out if mine will be covered.
Great, thank you so much! I will give them a call.
I wish you luck:) this is a horrible disease but keep faith 🙂 feel free to contact me if uhave any more questions
Hi Annie, I appreciate your question and you are right they’re are many causes to avn and Doctors do not know the exact cause. I’ll try to be short here and give u a med history. I have a condition called eosinophilic esophagitis that was diagnosed around 7 years ago. One treatment is to take an inhaled steroid and swallow it to keep inflammation down so I don’t choke when I eat. I took flovent for 6 years, until I found out I had AVN at which time I quit. I know for a fact that poison caused my bilateral AVN. Because my hip pain started nearly the same time I started taking flovent. I did not adress the pain with my doc cause I was young and it wasn’t too bad and I used to workout all the time with weights and so forth so I figured it was not a big deal, just bodily aches and pains. Every doctor I’ve seen said this was due to the flovent. I have no other risk factors (alcohol, disease etc…) Could it be idiopathic? I suppose so, but it would not be a logical conclusion considering my past. I have had 7 doctors conclude it was caused by my daily flovent use. I know my body very well and I know for sure that that poison caused this horrible disease and killed my bone. And now I have choosen to speak out about steroids and they’re blatent over use by the med community. They’re are serious side effects these drugs cause as I had to find out the hard way. I know that they work great for some people, especially in emergencies and I would never deny that right for someone to choose to use them. It’s a free country, right? I am curious though why you ask that question?
James, I don’t so much ask a question, as I wanted to introduce the possibility that noone can ever know for certain (I suppose coagulopathies might be an exception).
My example, I had a medication reaction and to quell it, I was given large doses of IV steroids. I was sure that those IV steroids caused ON. Or was it the IV steroids when I was diagnosed with lupus?
Or, because lupus, ITSELF, can cause blood clots, did that cause the ON? Or was it as is theorized that the IV steroids interfere with fat metabolism and the fatty clots that form as a result, cause ON?
Point is, that ANYTHING that causes the blood to clot, ANYTHING, that blocks blood blow to the bone can cause the deprivation of oxygen and nutrients to the bone and the build up of toxins in the bone to cause the pain.
Yes, steroids are a huge, and unfortunately, irreversible cause of ON. I t think studies show that 35% of cases of ON are steroid-induced. But, in the end, DOES IT REALLY MATTER? The damage has been done. It would be nice if we could know for sure, but there can always be an unknown autoimmune disorder, or clotting disorder or any number of things that are undiagnosed which could be a cause.
ABSOLUTELY IT MATTERS! I had absolutely zero risk factors before my AVN developed. It matters because when a doctor wants to try to use steroids on me in the future I will certainly deny them in any circumstance! Just like Faith’s doctor wanting to give a cortisone injection in her hip to help the pain. He’s an idiot in my opinion suggesting that it wouldn’t make a difference because it wasn’t in the bone. Also if you weren’t asking me a question then why say anything at all? Pretty sure this site is for positive helpful information not YOUR specific opinion about MY health. It is what it is, this disease is pure hell and frankly I don’t care what you think about how I acquired AVN. I know what caused it, its the only logical conclusion and because of that I will make very certain I never consume steroid ever again in any fashion. What were you hoping to achieve by trying to convince me that “I have no idea how my AVN developed?” Seems trivial and petty
James,
I agree that it matters very much. When I was first diagnosed with AVN I was obsessed with why I got it and no one could tell me why until I found out I had clotting disorders.
There is a definite connection between steroids and AVN. I can give you countless examples of people who had no other risk factors, but were put on steroids for one reason or another and developed AVN.
Not to mention if you have clotting factors and take steroids you are at an even greater risk of developing AVN. I will never take steroids unless it is for life or death!
Please keep sharing your knowledge. This site is definitely for positive communication. I appreciate everyone who shares their stories here in hopes that they can learn from my site and teach me things I don’t know.
Best, Cassandra
Thank you, I’ll try and keep the Faith lol sometimes I wish I could just get a replacement and be done with this pain for a couple years but then I’m so young so ill have to have a lot of replacements.
Ok thank you, I’ve actually had two core decompressions in my left hip and one on my right so I would have to call and definitely send them my records. I’m just hoping for another option other than a replacement.
Absolutely, well I hope she can provide you with that second opinion. I also know how you feel bout THR. Iam also young (33) so would have to have probably 3 THR’s in my lifetime. We’ve got to keep our original equipment as long as possible. But also have to make the right decisions for our health and that might include a THR. Hopefully Dr Kelly will give u some encouraging info and go from there…:)
That’s true, I just don’t know that I could handle 4 or 5 replacements possibly more depending on how long I live. How has the stem cell helped for you?
Faith,
I met a gentlemen last summer. He is the only other person I’ve actually met in the flesh who has AVN. He was in desert storm in the early 90’s. He was in his 20’s then and got a sinus infection because of the sand and was put on a course of prednisone. A few months later he found out he had AVN in both hips. He had his first THR at age 29. I met him when he was in his 50’s and on his third THR. I have to say that life had not always been easy for him, but he actually ran with his 17 year old three times a week and he walked perfectly normally. His life has not always been easy, but he works full time and has a family with four children. He has a full life.
I agree that you should keep your own joints for as long as possible, but when your quality of life is so affected that you may need a THR it might be the best thing for you to do.
In life we spend so much time focusing and worrying about the future, I do it all the time and wonder when will I walk normally again. We need to live more for now, live in the present. We don’t know what kind of developments there will be in the future for joint replacements.
Hey Cassandra, thought you’d be interested to know I had done all the blood testing for clotting disorders from Dr. Glueck and I am NORMAL for everything. He emailed me back this morning with the news, I am as he quoted the “8% who’s AVN is completely idiopathic” in his opinion. This only confirms for me more now that the flovent swallowed steroid caused my AVN. ITwas disheartening news cause I rally was hopeful to be treated by blood thinners….tough news indeed as it kooks like I have a long life of surgeries ahead…I hope you are continueing to progress with your treatment 🙂 no fun being on crutches!
James,
I’m sorry you didn’t get any confirmation as to why you developed AVN. How long were you on steroids for?
Its a double edge sword, but for many other reasons it’s good that you don’t have coagulation disorders. They complicate things. I’ve had a miscarriage and two blood clots. I have to take blood thinners for life and those can have side effects, possibly long term. I know it would have been comforting to know why this happened to you and then there was a chance that you could be treated with thinners. I understand your disappointment.
Trust me I know how frustrating and awful it is to have AVN. I have continued to get better, soooooo slowly. i have to look back several months to recognize that there has been a change. I’ve had the disease for 18 months now. I’m still so limited in life and emotionally this disease has taken a major toll on me.
I wish I could help people on here more. I really appreciate you reaching out and talking to Faith. It’s important that we support each other. Please keep me posted on what’s going on with you!
Cassandra
Has anyone who has AVN in their hips had issues with there feet being cold or discolored? My left foot is almost always cold and there’s a slight color difference in my legs but when I saw my doctor he notice it but didn’t have an answer for it.
Faith,
As you know from my site I have AVN in my femurs, but my extremities are ALWAYS cold. I sleep with socks on and wear gloves even on a warm day. AVN Is caused by clots in the small arteries that feed our bones (that’s a real simplification of the biology) so in a way it makes sense.
I’d be intrigued to see if other people on here have the same issues.
I’ve been looking all over to see if this is a symptoms. For the past month or so, my feet have been like ice.
Especially, now, I just had the decompression/stem cell surgery on my right and it feels like I have an ice pack on my right foot. The left foot isn’t much warmer.
I’m so glad this was brought up because I brought it up with Dr
I’m glad I’m not the only one who has a problem with being cold. That’s one reason why I want to wait on THR because there coming out with new things all the time and your able to do more things with them, but if it needs to be done ill do it.
Just an update. My entire story of getting 5 joints (hips, knees, right shoulder) with AVN is under “older comments.” I got this disease in January of 2011 from 3 weeks high dose prednisone with Cipro and Leavaquin antibiotics. The drugs are incompatible. I was 61. I saw 14 orthopedists in all. I traveled and sent my MRI’s many places. I did not pursue Regenexx. I was stage 1 when diagnosed and then a doctor “talked me” into core decompressions (just holes and nothing in holes) of 5 joints the summer of 2011. I rapidly moved to stage 2. 3 months post surgerry the doctor finally admitted the surgery was for “pain relief” and only had a “10% chance of new bone growth.” I was devastated. I was on an AVN forum and a person had gone to France to see the doctor who invented the stem cells procedure Dr. Philippe Hernigou and had both hips done by him with core decompression and stem cells. Dr. Einhorn had rejected me for this procedure; I had seen Dr. Lane who rejected me because I had already had “core decompressios”; and I was rejected by Dr. Cynthia Kelly. I went to France and October 1, 2012 got both hips done. I went back to France and January 9, 2013 got both knees done. My shoulder still needs to have core decompression (holes) and stem cells from my pelvic bones injected. If I consider how much the airplane ride cost, the hotel (Dr. Hernigou wants one to stay in France about 2 weeks), the surgery, considering 2 joints are done in one surgery, the cost was approximately $18,000 per surgery. So I’ve had two surgeries and got 4 joints done. My insurance does not cover stem cells. Should I have gone to Regenex? Perhaps. That is something I had not pursued and by the summer of 2012 I had had AVN in 5 joints for a year and one half and was in a state of panic that American doctors were offering me nothing. I am now stage 2 all joints having had AVN 2 years and 3 months. i will post for all of you the results of ex-rays I will have taken in mid April to see if there is any new bone growth. I did read, after returning to America, a pubmed article that better results are with stem cells plus debridgement of dead bone and a graft. I did not know that when I went to France. Was it worth it? I do not know. America gave me nothing in terms of hope. France gave me some hope. This disease is as it is. We must be strong. We must always research everything.
James,
I called my doctor today and asked again about the cortisone shot and his answer was that it was localized and wouldn’t affect anything where as the steroids that are injected are the ones that cause the problems. So I don’t know what I’m going to do. My only real option now is THR because when I had my last core decompression my doctor put in new bone graph so I don’t believe I’m a candidate for the stem cell.
Well I just don’t know, I had cortisone shots in both my hips before we knew about my AVN. After we found out my doc who did the shots said “well, shooting you up with all that steroid certainly didn’t help that (AVN) situation.” I mean it does help, you’ll prob get a few months of relief. But the only thing that you wouldn’t want to happen is for the AVN to pop up in other places in your body. Are you on pain killers? I am on tramadol and really live pain free. I am however stage Ia-IIc.
I guess I can only tell u what I would do and that would be to never ingest steroid ever again. Can you get a second opinion about the cortisone shot?
Also to answer your Q from earlier about my stem cell injection is I have only had my left hip core decomp w stemm cells and we haven’t done MRI yet to see if the lesion has healed any. I’m hoping to get an MRI before I do the other side…how old are u faith?
James,
I’m 25 I was 23 when I was diagnosed. I’m already on my second option and I doubt my insurance will pay for a 3rd but even my personal care physician is just suggesting medicine to help with the pain. I’m mixing ibprophen and oxycodone and it doesn’t help at all. Sometimes aleve will help take the edge off but tramadol didn’t help me. I will never ingest steroids again but I believe mine was a mixture of the steroids and the trama I sustained when I flipped my vehicle.
Where is your AVN? If its bilateral (both hips) then its prob steroid induced but one sided would prob be traumatic AVN. Also there are stronger anti inflamatories out there like meloxicam and celebrex as well as stronger opiods like dilaudid or morphine. I know its scary using those drugs but you sound like you really need some relief…
Tramadol didn’t help. Then the next step is to take another rung of the ladder to oxycodone. The use of ibuprofen and oxycodone is a wise use in the sense that you’ve a potent pain-killer (oxycodone) and a medium strength (depending on the dosage) anti-inflammatory. Both of those medications have liver-damaging effects, so they should not be used more often than prescribed.
Bottom line, however, they’re not working for you. Like James, said, stronger opioids exist beyond oxycodone. There’s hydromorphone (Dilaudid) or Fentanly (patch-really effective, though more expensive), various forms of morphine and then some use methadone because it is inexpensive. However, methadone is harder to titrate (change doses).
Talk to your doc and see if he/she would consider any of these or if what the doc thought about your seeing a pain management doc. These docs are usually anesthesiologists or phamacologists, or MDs who specialize in relieving pain. They have special training about all the pain receptors in the body and how best to block them and what doses of what medications will relieve your pain. It just seems to me that before you make any decisions about on treatment, your pain needs to be managed, because pain causes anxiety and the lack or a clear head, it paralyzes you and causes you not to think with the clarity you’ normally would.
Dr.Kelly says that the ibuprofen is contraindicated with AVN. She told me not to take it. I can’t take it any way, because I have gastritis and a previous GI bleed but she said its bad for the bones.
She says no NSAIDs!
James,
Yes it’s in both of my hips but my left one is worse. Ill definitely have to ask my doctor for something else because I need at least a little relief from pain. It makes my legs so weak an I can’t take it.
Faith,
Have you gone to a pain management specialist? When you’re dealing with this disease and the level of pain associated with it you need to talk to someone who is specialized in managing pain. Your general practitioner and even the orthopedic doctors don’t understand how excruciating the pain can be. I would see a pain specialist as soon as you can!
Cassandra
Cassandra,
I do need to look into a pain specialist, how would I go about doing that? I agree they don’t understand the level of pain that we have I wish they could trade places with us for just a day 🙂
Faith,
It depends on your insurance. If you have an HMO then you will need to get a referral from your GP to see a pain management specialist. If you have a PPO then you don’t need a referral. Go on your insurance’s website and search for a pain management specialist and make an appointment for as soon as possible.
Hope that helps. Getting your pain under control is very important for your state of mind, not just for your body. Let me know if you find a doctor.
Take Care, Cassandra
Hi again faith,
I know what you mean about weakness in your legs. If I’m off my pain meds I can barely climb stairs. I hpe you will follow the advice above and find a pain management doc they are sometime called physiatryists (sp) too. That’s who is over seeing my pain management and prescribing my pain meds. Other docs don’t really understand our pain but these are specialized docs who are trained to help specificallyh pain.
I’m preparing for my second core decomp and stem cells with Dr jelly next week …let me know how your doing
Haha! I of course meant Dr. Kelly!
Faith, if you are talking about the University of Virginia, I have been there and last spring was offered prednisone injections. It was odd because I came to discuss my MRI’s and stem cells not prednisone. I have a fear for that drug that ruined my body and obviously said no. I hope you see a pain clinic. Moreover, I hope the pain clinic does not press prednisone injections on you which they are I’ve read known to do. However, you need serious pain medication. I’m taking a mild medication Tramadol and it is not sufficient for knee pain I have. I do also hope you take James’ advice and send your records to Dr. Kelly in Denver. You should get a further opinion before just accepting one doctor’s opinion about collapse. Send your records also to Dr. Thomas Einhorn in Boston. Surely he can confirm what is going on with your joints right now. I read on another forum he did stem cells with a person whose hip was in “collapse” as you know there are degrees of collapse. You are awfully young to deal with this without a 2nd opinion.
Yes I’m talking about the university of Virginia. Thank you ill definitely get another option and look into a pain management clinic, I want relief not to add to my disease. Ill send them my information and see what can be done, thank you!
James,
I will definitely look into a pain management specialist. I’m doing ok u have good days and bad days, today’s a rough day because my whole body is sore from all this. Do you work or are you on disability? Disability might be something I need to look into or even half so I can work a few hours. I hope everything goes well for you and that this helps you. Ill gather all my records probably next month and send them to Dr. Kelly. I need to wait because ill be without insurance for a couple weeks but ill definetly get it done.
I do work, limited though. About 30 hrs/week. I wouldn’t be able to tho without my pain meds. By the time 5 pm comes around I’m so tired I hardly have the energy to drive home. Disability sux too cause u get like only 50% of your former salary…I tthink once you get some pain control you may be able to do some more things, like work 😉 let me know what Dr Kelly says and if u ever get in to a pain doc…
James,
I work 40 hours a week and I’m so tired when I get done that I don’t want to do anything and my left foot swells. I will send my records to Dr Kelly because the other doctor in the US denied me because he didn’t do the surgery on patients who have had a collapsure.
Faith, Where are you, geographically; can I ask? There are several pain clinics and specialists, some do different kinds of interventions for pain medications. It depends on the kind you want.. Some ‘play’ around and exhaust medication approaches first while others do only implantable pumps and things like that.
I didn’t want that yet, so I opted not to continue with him. Butt, in Chicago, I saw a TERRIFIC guy who was able to manage pain with LOTS os small doses of heavy duty pain meds. (some not so heavy).
I’d just look up ‘pain management’. Or, ‘Dr. Google’ or your friendly, neighborhood phone book and give a few docs a try-. Or ask you PCP or OS who THEY’D recommend.
Good luck and keep us posted
Annie,
Virginia, thank you I will have to look that up.
Hi All
Hope everybody here in this forum as doing fine and doing their best to come out of AVN.
Thought of give any update regarding my treatement process for AVN stage-II.
In December I had core-decompression for my left hip for AVN stage-II.
I did have relief of pain for some time, but as the time passed by it increased
on totally new area and the intensity was horrible than before. As Cassandra told
this method do not have high sucess rate, and you were perfect.
Last month I opted out another method of treatment know as Ayurvedic system of medicine. This is traditional medical system in India similar to allopathic system. The treatment
process is non-surgical and is know as Panchkarma treatment. Its diffcult to tell in detail
what medicine’s they have used. But it was the herbs which they inject into to your intenstine through your rectum and you are suppose to hold this liquid for about 12 to 13 hrs and can passed out during stools.
And tell you its painless process. The treatment period would be around 10 to 16 days depending upon the grade of disease. The notion behind this is if your intestine is clean it helps in proper blood circulation and also it improves you immnue system.
So whats my condition today????? I have been releived of pain of about 90%, getting back to normal life, I make it point to walk for 5 miles as my workout routine, life has been without pain killers…..what’s more required?????
I am suppose to take his treatment every three months in this year, which i do not mind as it can bring me back to what I was.
If any body interested, please let me know I can pass the contact number and email id of the doctor who is looking after this. I am his 14th patient on AVN, and all are doing fine after this process of treatment. There were guys who had lost hopes in life after core-decompression, stem cell therapy, but this process has given them a positive hope in life.
Cheer’s
Sachin
I am waiting to find out whether the holes drilled in my 4 joints (core decompressions) plus stem cells taken from pelvic bones (bone marrow aspirate concentrate) works.
I agree simply drilling holes into bones does not cure avascular necrosis (I had had that done prior to having holes drilled again this time with stem cells added) notwithstanding some doctors talk about its high “success rate.” Research by each of us is the key not to be talked into procedures that have no studies with percentages of success rates. I get my information now from articles in pubmed which go into detail the percentages of success with different procedures.
I have not read yet in pubmed that herbs make a bit of difference with avascular necrosis. If they did, a research article would surely talk about the percentage of success and it would be published in pubmed.
I actually have learned since my stem cell procedures that an even better track record of “success” is the holes, stem cells added, and a bone matrix.
Heyy sachin I am in 3rd stage of AVN. I too heard about pancharma. Can you tell which is the best panchkarma centre for AVN?
Just saying hi and thought I might let folks know I have had great luck with cd hips. Know many seem to bad mouth them. But they can and do work for many and I am one who is really glad I did them on my hips. Hopefully I won’t need more on my hips. It’s been about 3 years now and holding with no progression on my hips.
I just had some bone extensive bone grafting done on one of my knees. Am going to be going for rehab here soon for that. When I have enough time and rehab under my belt on this first side on the knee grafting, I will be going for a similar grafting of bone to the other knee.
My ON is from massive amounts of decodron over a number of years to control anaphylaxis to poison oak which I kept getting exposed to internally and externally with my work as a forest fire smoke jumper and hot shot team member. I don’t work fire anymore.
There are a couple of James posting here I see so maybe I should sign as James S or James from San Diego. Don’t want to confuse anyone between another James who has posted here. This is my first posting here.
James S.
Hey James S. This is the other James from above. Thanks for sharing…
An update for yaull who might wanna know, I had my right hip core decomp with stem cells 2 weeks ago w Dr. Kelly. She said surgery went well but I had HORRIBLE post op pain, some of the worst I’ve ever experienced. Crazy too cause my left hip was almost painless, even through recovery…anyways I found out some interesting info about the recovery process and bone growth from Dr. Kelly. Before I did my right hip I wanted to see how my left was progressing since it had been 6 months post op. Dr.Kelly said that MRI would show nothing but a “mess” in my femoral head. She said I’d have to wait 2 years to see if any bone remodeling had taken place and that they could only monitor for additional disease progression through xray-basically they could only tell me if I progress to collapse…I found this very interesting, I think this disease kind of befuttles the Docs as well, some people do very well with Core Decomps(as James S. Says above) and others…well we know.
Anyways hope this finds you all well, and let’s all pray for Bone Growth!
PS: CRUTCHES SUCK!!!
Yes, crutches do suck! Feel better.
A question for both James who have posted.
To James who has had bone grafts of knees, do you mind sharing where you got such surgery?
To James who has had stem cells by Dr. Kelly, did Dr. Kelly tell you how she would know if the stem cells worked? Would it be by MRI’s or ex-rays? How long a period of time would pass before you would know? As I read what you posted, I thought what you posted is that as far as your untreated with stem cells hip, it would takes years to know if it collapses and one would know that by ex-rays. Hope I’m not confused. Thanks. I got stem cells recently myself in hips and knees overseas and do not know how long it will take to understand if there is new bone growth in these treated areas and the diagnostic tools would would use to show bone growth. Also, worst case scenario of my knees, I was wondering where I could get grafts. Thank you.
Yes sorry that might have been confusing. I to date have had both hips treated one time both exact same way and with Dr. Kelly. Decompression with 3.4 mm cannula AMD bone marrow aspirate spun down and reinjected real time equating to about 10 ml of stem cells…Dr. Kelly said it will not be until 2 years if we know if my bone has done any regrowth. And in the mean time we will monitor with xray to make sure they haven’t collapsed…beyond the 2 year mark I do not know. So to answer your Q sounds like you (and me) need to wait a couple years before we can know for sure whether or not remodeling has occurred…
This is James S who had bone grafting to 1 knee so far. Mine was done by Dr. Goodman at Stanford. However, I went all over the US to top ON docs and the few I did not see personally we sent my records to for review. Pretty much every one hands down said doing bone grafts on my knees was the way to go. There are a lot of docs doing bone grafting and it’s been done for years for ON and other conditions as well. They can use your own bone (usually taken from the pelvic crest) or they can use donor bone. Among others who recommended bone grafting for my knees were Einhorne in Boston, 2 different docs at Hospital for Special Surgery in NYC, Dr. Kelly in Denver, Dr. Mont and Dr. Hungerford both in Baltimore but different practices and different hospitals, and a couple other docs as well, one from Univ of WA and one from Scripts I also stopped and saw a well respected ortho in Las Vegas who also practices in the Los Angeles area who also said try bone grafting for my knees. All in all it was a hands down try this first. Some call it OATS some don’t refer to it as OATS. I am not the only one who has had this done for ON, it’s pretty common unless you are older or smoke (or have smoked) and then usually it’s time to look at knee replacements if you are over 50 or 55 say. I golf with a guy who had ON in the knee from scuba diving. He had a knee replacement and is going on 25 years or more with that same knee replacement and doing great. Some do a type of stem cell concentration to give a maybe growth boost along with some bone growth factors that work like stem cells. It’s being done a lot of places and is not experimental at all. Insurance covers it.
Just a strong side mention is often what options any ortho will give patients fall down the lines of if you have ever smoked. I never did smoke. Because I never smoked there were options orthos were willing to discuss with me that otherwise would never have seen any discussion at all if I had ever smoked. I find it’s a hard line drawn. Doc want the best outcome and the facts are there that long have supported very poor vascular growth outcomes in patients who have history of smoking. My girlfriend works in the medical field and says this smoking ‘thing’ is really common across all kinds of medical sub-specialties. Smoking or having been a smoker cuts down your options not just with ON as a diagnosis but with many other things as well. I am happy I never smoked. I was a big sports guy all my life and think that had a lot to do with why I never even tried smoking, plus I saw it as a huge waste of money I wanted to spend on other things
James S
James,
Do you have the name of someone I can contact at Dr. Kelly’s office? I’ve tried emailing and calling and have not gotten a response back.
Hi Faith, try asking for Rhonda when you call. She is Dr. Kelly’s PA. A very nice lady, in fact I just met with her today for my 2 week post op check. Strange they’re not responding to you…if you get her vmail just explain (short version) what’s going on with you. I would hope she would call you back…
Or at least she would maybe pass you off to someone else who could help. 🙂
On The Denver Clinic’a website they have a contact form, but also, you could try Rhonda. I went the form route and reveived a pretty prompt response:
http://www.thedenverclinic.com/contact-us.html?view=message&layout=message&pf=1
Annie
James,
Thank you, maybe I left a message with the wrong person the first time? I will try again thank you
Annie,
I tried the website a lot and something with the security code it won’t let me send them an email. I hope they can fix it because explains everything in an email would be so much easier.
To Faith: Back in 2011 I took my MRIs and mailed it to Dr. Kelly. She did call me.
Faith, when calling the front dest,make abundantly clear that you’re callign from out of the are, tell them WHY you didn’t use the online form, and ask to speak to Rhonda, Dr. Kelly’s PA OR the person in charge who responds to the mailbox..
Annie
Does anyone have any suggestions on exercises that I can do without putting weight on my hips? I don’t have a pool that I can use and Dr. Cui won’t give me any other suggestions other than water aerobics.
Faith,
I don’t know what other exercises you can do where you won’t be putting pressure on your hips. Unless you could do some chair exercises and lift weights to keep your upper body strong. As far as doing other exercises I would ask your doctor to write you a prescription for Physical Therapy. A lot of PT places have pools. I did aqua therapy for 10 months in a small pool. I swam for 6 months with a floater between my legs when I couldn’t use them. It’s important to keep your core muscles strong, but I wouldn’t want to recommend what you can do on land without being qualified too. I think going to physical therapy is your absolute best bet! Find out if your insurance covers it and request your doctor send you. Be adamant!
You don’t need to do water aerobics as an exercise. Water EXERCISE is a good one to do, but it doesn’t need to be water aerobics. Just plain walking in water is exercise. But remember, exercise in water is tricky because you can feel so good, there’s resistence, but sometimes you don’t feel the resistance. So ALWAYS be gentle.
You’re not supposed to cross that midline, right and not supposed to cross (I think it’s shoulder w. Whoa; I just read where you don’t have a pool, you can do this in,
Can you get a script for PT for your hips, have the PT show the execrises that you do lo and add on anfoves
Thank you James for your response and naming doctors. That is always so helpful. I was a smoker for 30 years (pack a day) and gave them up in 2003. I got AVN in 2011 and was 61 at the time of diagnosis. Oddly, I heard from I’ll call him my USA doctor (but I’ve seen so many!) today who just got my letter to him requesting prescriptions for ex-rays to see what is going on with my hips (stem cells by Dr. Philippe Hernigou Oct. 1, 2012) my knees (stem cells by Dr. Phillippe Hernigou of Henri Mondor Hospital in France January 9, 2013) and my right shoulder that has not been treated. This USA doctor seems really interested right now to see what the ex-rays show and I’ll be able to post for all of you what is going on as well. Incidentally the cost of surgery and hospitalization in France combined was $22,000, namely, 2 times I went to France and had hips done in one surgery and 2nd time I had knees done in one surgery. tThe total cost of both operations was$22,000. One also has air fare, meals (find a hotel that has a microwave or supermarket down the street), and a hotel cost. It is not as expensive to go as you may fear. One things this USA doctor told me a year ago was stem cells were not “economical.” He had had a trial stem cell program of his own of 2 years’ duration and came to that conclusion and also stem cells don’t work. I defy anyone to say you could get this amount of surgery by the number one doctor in the world (who invented the stem cells surgery technique, namely, Dr. Hernigou) for such a small amount of money. American medicine is simply overpriced and we all know it. Another thing this USA surgeon had told me prior to my going was “stem cells do not work” and all my joints will collapse in 2 to 3 years. We will have to see what happens to me. I am 63 now incidentally and it has been 2 years and 4 months since getting AVN. I think people should go anywhere in the world you can afford and get treated. I can personally state that I was thrown off of a major AVN website because the owner told me not to post about “medical tourism” and my treatment in France! I post only because AVN is a tragedy for me and for whomever is diagnosed with it. I read last night a medical article describing it as a “mutilating disease.” It is. I appreciate this blog to share my information. . Be careful about AVN websites. The owners have their own agendas. This site information is given freely and not censored. One must constantly do research of this disease. Trust no one but yourself. (There is also posts by people stating stem cells are failing clinically in the USA. If you read someone post that, demand a citation. I asked my USA doctor today why did you not do grafts? He said they do not work on lesions over 15%. However, one of my hips has a lesion 15% of less but no graft was offered to me by 14 doctors.)
I should add to be sure and discuss all aspects of pricing before you embark on medical tourism. Had I encountered difficulties of some sort in my stay at Henri Mondor Hospital, I could have encountered extra charges. Fortunately for me I did not! Also, cost of surgery or your stay in the hospital) change over time. Another matter to consider is the “exchange rate”, namely, the cost of purchasing euros verses the dollar. That is ever changing. Your dollar is worth less than the euro. All this was new for me. I never traveled overseas before. Of course if you have insurance that covers stem cells, that is ideal to remain at home as there are a few places in the United States you can get treated.
Dear All,
I am 36 yrs old and i got diagnosed with AVN on my right after my delivery. I have never been on any kind of medication, i am not alcoholic, or a smoker… so i am guessing it was a trauma! who knows… i am more stage III … i am going to have Xrays next month and i will send it to Dr Einhorn, i am hoping the stem cell with work for me!!! or i will have to wait until the pain in unbearable and do a THR… even though i hate to have it at my age!! has anyone heard of hip resurfacing? i just wanted to share my story with you all!
Maya, thank you for sharing your story. I have AVN and have posted a number of times. I am waiting on results of my ex-rays to see if stem cells in 4 joints worked for me. I will have them on Monday. I do hope Dr. Einhorn can help you. I am an older person than most who get this disease and so this puts a damper on my hopes somewhat re my own stem cell experience. I have no medical training but have read AVN forums now for 2 years and have read stories similar to yours about getting AVN. My own cause I know was prednisone. I hope someone posts re hip resurfacing experiences. Good luck to you!
Hello,
i enjoyed reading through the current stream of emails going back to mid March. I find it very interesting that these email comments all cover the similar experiences of cds, stem cells, a little about hip resurfacing, aruevedic therapy, Dr. Glueck, steroid shots or not, THRs, opioids and pain management, steroids as cause or not and with even the same names of doctors from I have had contact with since being first diagnosed with multifocal avn (bilateral hips, knees, shoulders, ankles) and most recently bilateral thumbs. It is interesting that no one has mentioned the Duke treatment of FVBG grafts which at one point was the up and coming procedure as the alternative to THRs.
One of the leading orthopods at MGH told me back in 1999, there has not been a major procedure that has been universally adopted for the treatment of AVN/ON because they don’t ever seem to produce replicable large numbers of success except the THR. For the other joints and there is much less demand because of the incidence of AVN/ON in these joints. At one point Drs. Mont and Hungerford (father and son) were leading the charge with core decompressions and adding grafting as the materials were developed.
In my own case as I posted many months ago, I had bilateral THRs before I went online and found the information and “major sites of AVN/ON patient correspondence”. I had to laugh reading the posts about the owners of those sites and what was said about personalities and agendas-somethings do not change. I went through the pain management battles and became so outraged with the way chronic pain patients were and are treated that I became the first non-physician Board member of the now defunct American Pain Foundation (APF). I’m glad the hospital of treatment of AVN in Beijing didn’t come up as it had done at one point in the early 2000s and many patients spent alot of money and time chasing that possible treatment including me. I was also treated with CDs by Dr. Mont, had Dr. Glueck’s testing and was treated by Dr. Lane with stem cells in 2007 and was even a spokesperson for one of the companies that had developed the spinning/concentrating machine. I remember talking Dr. Goodman at Stanford when he had only done one stem cell procedure on a woman’s shoulder.
I think it is very important to keep in mind that the support aspect is very helpful with these groups and each person’s path to AVN/ON is a personal path with difficulties comparing results because of differences of our health conditions and what seems to be the likely cause and a person’s individual physiology which contributes to different results and effectiveness of the treatments attempted. One important aspect to keep in mind is to understand the size of the lesions in each affected joint and how this impacts the course of the disease.
We all come to this disease with different life experiences and relationships to the medical community (I was a hospital administrator and was 47 when I was first diagnosed) and the onset of pain occurred 17 years after the massive doses of solumedrol for an ulcerative colitis flare. It is very important not to compare your process to anybody else.
I would highly recommend having THRs when you have exhausted all other procedures and have not been fortunate enough to have success. If that becomes the procedure of choice, find the best physician you can who has done a large number of the procedure who has a low infection rate and who is using the most tested and which provides the longest life implant.
Make sure you ask about how much bone is being affected by a CD with bone graft or stem cell and ask the question if the procedure is done will it weaken the bone that is left and how will it affect me having to have an implant.
As Dr. Burke described the disease process to me many years ago, the AVN provides an assault, dead bone is created and depending on the size of the lesion it will lead to collapse or not. In my case, the lesions have remained the same size in all of my joints for 14 years. The collapse started early in my hips and was complete at the time of the THR surgery. I will never know if a CD which was all that was available except the FVBG at the time of diagnosis in 1999.
The turning point for my long term dealing with having this disease came in 2006 after I went to China and was able to reduce the amount of opioid medicine by 70% when I received deep tissue massage in China for 90 minutes a day every day for the 30 days I was there (I went to China 3 times over 18 months and stayed for 30 days each time) and realized I had bone pain and muscle pain (from deconditioning) and by reducing the muscle pain I reduced my overall pain levels. I began a 3 year PT process starting with aquatic therapy in a therapeutic warm pool at our local YMCA. I also complete a course in chronic disease self-management developed by Stanford University to learn skills to self-manage my experience. I was fortunate to have had a doctor who from the start assessed my condition saying I would never work again (he said this when it was known that only my hips were involved) and I had been fortunate to have purchased a private disability policy as well as the group policy so the hit to my income wasn’t as difficult as it could have been.
I was also fortunate enough to have a great support network with my wife and other family members. I don’t want anyone to think it has been a piece of cake- I have had my share of insurance battles, pain management battles, and scarry and emotional moments that are a challenge living with chronic pain. Locate a top doctor with excellent credentials and with whom you develop a high trust level. Being in Boston and near NYC I have access to top centers (MGH and Hospital for Special Surgery). Read the articles that are available and really understand what the published papers say about results of the different procedures-there are excellent early papers by Mont, Hungerford and Hernigou available. I haven’t kept up with current research and there were some successes with hyperbaric therapy which I haven’t followed recently. Read studies about hip resurfacing, from what I recall there was early success, and later problems were being identified. I hope some of this has been helpful. Also, it is very important in my mind to develop a personal practice of meditation and/or deep relaxation. Do get Glueck’s testing protocol and take it to a geneticist in your area and see if they recommend other tests (which is what happened in my case) and find out if you have any clotting disorders (I didn’t and like James, pointed to the solumedrol as the likely cause). If you have the energy for a medical malpractice research lawyers who have won steroid induced avn/on cases and share your story, understand were you given proper informed consent, was there any deviation from the community standard of the prescribing of the steroids, know the statue of limitation laws and have a conversation with a pit bull medmal lawyer. For those who would consider social security filing-understand the requirements for your type of work and have a discussion with your doctor if he thinks you are disabled and understand the environment with the social security system in your area. If you work for a large company carefully speak to your HR people and understand your sick time policy, if you have group disability and can you pay the premium with after tax dollars, what the short and long term coverage you might have. I also highly recommend having a counselor to talk to who can help you sort out the many feelings you may deal with and understand your medical insurance coverage. If I can answer any questions please contact me.
Don, thanks for sharing. I noticed where you talked about muscle pain caused by deconditioning. I have developed an extremely annoying, constant mid level ache in my legs. Basically from the bottom of my buttocks all the way down to middle of my calfs, all on the back side of my legs. I’ve asked multiple docs and no one knows what the cause is. A P.A. suggested deconditioning pain. Anyway, if that is what it is what did you do specifically as far as exercise, PT, massage to help relieve that pain? I’m hoping that once I’m off my crutches (in 2 weeks) that I can really focus and work on rehab like doing weights and riding the bike…anyways if you have any specific exercises that helped u with this muscle pain I’d Mich appreciate any insight you can give! Thanks in advance.
James,
I’m really frustrated by the pain I have because of being deconditioned. I’ve had ON now for 19 months, but it’s improved almost 100% according to my latest MRIs. However, I continue to have pain all the time which varies from day to day. I go to PT twice a week, swim four times a week and do acupuncture I still can’t walk that far and have to take tramadol three times a week. I keep asking my physical therapist how it’s possible I still have this much pain and he says it’s all muscle related due to atrophy. I asked Dr. Glueck why I still have so much pain given that my disease is so improved and he said sometimes pain lags behind the healing. I’m very frustrated. It’s really hard mentally to accept I’m getting better when I still have so much pain. I start wondering if I will ever have a pain free day ever again. It’s very disheartening.
Cassandra, just to give you a little insight into my pain world. I lived with horrible hip pain for about 5 years before I was finally diagnosed w AVN. My guess is it was developing for that amount of time because this was the same amt of time I was on the flovent (steroid) I couldn’t sleep at times and could barely walk but I just chocked it up to “aches and pains” and then I was given the horrible news of AVN. From that moment on my pain was so Much worse. It’s a mind thing, when I thought I was fine I just dealt with the pain, for 5 years I didn’t take anything for the pain. Then the dx and its like my world caved in. Now I had a reason to take pain meds all the time (i take 3 tramadol a day + oxycodone as needed) what I’m trying to say is you’ve got a 100% improvement on MRI! That’s incredible! You’re healing from this horror! Let that be a new mind set for you, just as I thought when nothing was wrong with me I just dealt with the pain. Your new mindset should be “im healing, getting better everyday, there’s no reason I should have pain” I preach mind over matter and I should take my own advice but you have the opportunity to beat this disease both visually (as shown on MRI) and mentally and FOR REAL! That’s a very rare thing in this biz 🙂 the only other thing I would add is that you (and I) have to get our mobility back. And I really believe the way to do that is to walk. That’s the thing we all took for granted before being struck down. It sounds like you’re doing great things with rehab but I believe our muscles, the ones that have atrophied from non use are those we use for doing the most simple things…like walking. As soon as I’m off crutches (10 days) I’m going walking. I may never be able to run again but I think we have to use our legs for the thing god gave them to us for, for mobility and to walk. Keep me up to date on your progress and the pain, I will be doing the same here in a little while. Good luck!
James,
Your reply to me really inspired me. I’ve been thinking about what you said. A lot of it is mind over matter. I have a hard time believing I’m better and must continue to remind myself that almost constantly. Especially when my pain is still bad. I’m working hard at physical therapy and I started doing the stationary bike for 20 mins every few days. I’m also trying to walk 3 miles a day with my cane. I swim 4 miles a week too. Still my body is totally de conditioned.
I know I’m very very lucky for many reasons. I count my blessing everyday and am thankful beyond words that my AVN no longer shows up on an MRI.
Thank you for all your postings on my site. You are very compassionate and it’s much appreciated!
Best, Cassandra
Blog that lists various new treatments and debunk some treatments that do not work.
Read:..
http://avnanswers.blogspot.com/p/treatment-options.html
Cassandra, an improvement of 100% on MRI means there is no sign of AVN? May I ask what stage you were in when you first got treated by Dr. Glueck? This is wonderful for you. I feel badly about me that I didn’t hear of him until I was stage 2 and still have not been placed on blood thinners! by local hematologist. That’s a long complicated story. Were you stage 1? (I’m waiting on ex-rays taken for the results. I will post latest news re my stem cells.)
Jo Ann Daly
I got my ex-rays 7 months post stem cell surgery on hips and 4 most post stem cell surgery on knees. I am 63! The hip ex-rays have not changed from December 2012, namely, hip femoral heads have not remodeled. There are bilateral linear tracts through both femoral necks consistent with core decompression surgery. The right knee remains free of any signs of AVN. The left knee in December 2012 was free of all signs of AVN. On this May ex-ray though what is seen is a new lucency with sclerotic margin of a metaphysis lesion. I should say I went back through all prior ex-rays and MRI’s. There was never a lesion in the metaphysics section of the left femur knee leg bone. the lesions were in condyles and right tibia. This cannot be the core decompression tract holes, by my research today because the doctor drills into the condyles not high up in the metaphysis area. This means to me my AVN has spread! I need to send ex-rays to the doctor in France and my local USA doctor. Also there is lucency and changes in the iliac pelvic area. This radiologist suggests MRI of this area is warranted although he states this could be from drilling into the pelvic bone to get stem cells. Needless to say I am disturbed by this finding of a spreading AVN. It will take time to get further information. I haven’t decided what my next steps are going to be.
Sorry to hear this news…only thing would suggest is that the change in your illiac crest would be from the very sharp needle they use to extract the stem cells. Also, Dr. Kelly told me it’d take 2 years to see if the stem cells were remodeling the necrotic areas…I wish u luck. Maybe don’t be disheartened until you know for sure. MRI is the best form to know if its spread…
What a nice post you have written for me, James. And I did not know it takes 2 years to see if stem cells remodel the necrotic area. I thought one knew right away and over the course of 3 or 4 months. I will do everything I can do to try to get an MRI, which probably means getting a new doctor as my current American doctor does not want to use MRI’s. He doesn’t understand the uncertainty those of us with AVN have particularly now with this ex-ray finding. I hope the ex-ray finding is wrong but that is a long shot.
If you have xray evidence of possible spreading of AVN i really dont know why a doc wouldnt do an MRI. I actually asked Dr Kelly if she would order one for my hips to see if anyuthing had changed and her specific words were that the MRI would show “a mess” in the femoral heads. and that itd take about 2 years before remodeling would actually show up on MRI. Also i hope you have stayed away from all NSAIDS? like advil, aspirin, aleve etc… Again Dr kelly advised me those drugs would impede the work of the stem cells. Also take vitamin e and vit c everyday to help those cells to activate and work. I take 400 iu of vit e and 1500 iu vit c everyday for stem cell health.
This is a comment on nothing in particular, but I did feel that Jame’s post on a positive attitute and not leaving room for pain and having the mental attitude that, :“im healing, getting better everyday, there’s no reason I should have pain” I preach mind over matter and I should take my own advice ”
That’s so true because when you think those positive and healing thoughts, your world is brighter; you don’t exactly know how, but some surmise that it is partially due to the body’s creation of it’s own painkillers-endorphins. This has been studied and found to be true.
However, a persistent pain that the doc doesn’t have a good explanation for shouldn’t be discounted as incidental or healing pain. Especially if there has been a joint replacement. There always looms the possibility of a blood clot forming, which is why some surgeons watch you like a hawk. Because we tend not to move-or tend not to be able to move around post-op, even though we try, there can be a blood clot.
This is in no way meant to scare each and everyone of you that a pain must mean there’s a blood clot. NO, it’s likely a healing pain. But if it persists, talk to your home care nurse or PCP or surgeon and point it out. But, until then, like James said, HEALING THOUGHTS and toe wiggling!!
Yes I agree Annie, that persistent pain def needs to be checked out. I wish I would’ve got my hip pain checked out 6 years ago, I may have been able to catch my avn much much earlier…
I do know to avoid NSAID’s! I set up today an appointment next week with a doctor in USA closer than current one who is 5 hours each way. Also current one just focuses exclusively on joint replacements . Also Ex-rays in October 2012, December 2012, January 2013 did not show any signs of AVN of knees–despite the fact my MRI’s do show signs of AVN but not in this “new area”. So of course I want to confirm via MRI that there really is a new area of AVN. Your tips are good about vitamin C, E, D. Speaking of the pelvic bones, james, I was under tremendous pain for six weeks at least after each surgery. Nothing I was told prepared me for that and nothing I have read of others getting stem cells mentions it. This may be because I have “old bones” (I’m 63). I pray it is not AVN in the pelvic bones. Radiology report also says portion of my pelvic bone is “crocked”! I need MRIs of the pelvic bone to see what is going on. I think there is urgency about getting MRI’s and I’m not going to beg any doctor who does not readily authorize at least an MRI of my left knee and pelvic bones. I’ll keep seeing doctors until I get those MRIs!
Yes that is strange about your illiac pain. I had minimal to no pain after stem cell extraction. I’ve been researching these clinics that do adipose (fat) stem cells and they’re getting huge amounts of mesenchymal cells-like 500 million! My illiac crest gave up about 2 million according to Dr. Kelly. I’m thinking about having this done in the future, maybe a year or so with a direct injection into the femoral heads and by infusion. Look them up if your interested, just search “stem cells” on google. There’s one in la Jolla Calif and one in phoenix. Maybe if we bathe those bones in stem cells every couple years we could see some improvement. Each treatment is about $7000. Something to think about
I’d be very hesitant to proceed with my shoulder which has not yet been treated to take stem cells out of a pelvis that is “crocked” and showing lucency and sclerosis. I just was on another forum. I had posted that my ex-rays do not show any signs of AVN other than this new lesion in a portion of left femur higher up than the condyles. A person I know very well posted that both of her knees are collapsed (she just had a total knee replacement of one knee) and yet her ex-rays do not show AVN. So I had been drawing comfort from the fact that my ex-rays overall (except for one new place in left femur) don’t show AVN but that is apparently meaningless in many cases. Only MRI’s can tell you the truth about your AVN. Doctors never tell you these details. That’s why these forums are so important. Yes, I would be interested in fat cells for shoulder. However, the costs incurred to date for me, James, to get 4 joints done with stem cells and still another joint to go — well, I financially won’t be able to keep getting treatments at $7,000 (plus traveling expenses) a joint. Not with 5 joints and being on a pension. I would like shoulder treated but right now I must have MRI’s at least of pelvis and this left knee.
Cassandra, if the lesions do not show on MRI then it’s healed. Dr. Phillipe Hernigou in France told me he did not expect my “old lesions” (they were almost 2 years old at that point) to recede but that if the stem cells worked as they should, the disease would not progress. To have clean MRI’s must mean you no longer have AVN. But you have had it for 19 months. I’d think that would in itself make you deconditioned. I’d take those MRI’s to an orthopedist you trust and discuss your pain. He’d probably write you a prescription for physical therapy and your insurance will cover it. If you can afford it too, I’d try to get deep massages. Maybe there are infra red lights or some kind of healing deep tissue machines you can purchase (I think I’ve read of something along those lines) that you can apply to your legs. With time it would seem pain would stop because MRI’s really do show everything. I told a doctor some time ago that I was dealing with my AVN by largely non weight bearing. He did some mental math and said at 7 months of inactivity that translates to 4 years of deconditioning. He wanted me to go swimming.
Jo Ann,
You are right. At this point my pain is due to de conditioning. When two orthopedic doctors said they saw 100% improvement it was hard to believe considering that I still have so much pain. But it’s been getting better through doing PT and riding a stationery bike and just trying to push myself to walk more. My physical therapist thinks my pain is a secondary cause of having had AVN. I have patella femoral syndrome and patella tendinitis, I still don’t walk properly and my joints and IT band are so tight and out of shape. Even though I swam the entire time I was in a wheelchair. It just goes to show how quickly our bodies regress without activity. My goal is to be off pain meds in the next six months. I hope I won’t be using a cane then either. But I have a feeling the road to recovery is going to be long as I was in a wheelchair for quite a while.
Take Care, Cassandra