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) 
hi.i wrote my story on here in march..could someone please let me know why it was never posted? thanks judy hartley
Are you sure it’s not buried in here?
🙂
I was happy to come across this nice patient blog dedicated to ON patients. I have been recently diagnosed with AVN in March this year. Stay in Bangalore, India. I have been a fitness enthusiast who jogs 4 kms a day, 6 days a week for past 15 years. I am 44 years old and my AVN has been diagnosed as largely idiopathic (cause not known).Then one day in late Feb, I started experiencing pain in the hip joint that was dull and just refused to go away; sometimes self resolving and other times persistent. Visited an OS in early March. X rays of the spine and pelvis showed no bone decay. Flexing exercises performed threw up discomfort when the right leg was pulled laterally. The OS advised scans. MRI and CT scan of the extremities showed up moderate necrosis of right femur head and very negligible of left femur head. This has shocked me a great deal. My walking posture has changed quite significantly in the past one and half months. There is a pronounced limp in the right leg and now my right knee too is beginning to hurt.
The OS has recommended that I get a CD (core decompression) done immediately since the scan shows the right femur to be still intact and has not collapsed. The window of opportunity given to me is another 3 weeks when I have to make up my mind. The OS says that once this window passes, there is every chance that femur collapse could occur in which case, CD becomes redundant.
Can some one please let me know if this is correct suggestion? I am going in for a second and maybe even a third opinion before I make up my mind in the next 2 weeks. I wanted to know if AVN really progresses that fast or is it a slow, painful progressive disease? Any information will be most useful.
From my research,I see stem cell surgery is much more effective for AVN in the earlier stages (with minor core), but core decompression alone may not help and may prohibit other surgeons from offering stem ( BMAC) in the future. Also, in the US done insurance will not pay for more than one core, so if ineffective core was done, trying stem later wound not be done. I personally would not allow a surgeon to do core without bone marrow aspirate condensed BMAC/ stem.
Where do you go for the stem procedure? Mayo Clinic in Rochester?
I’d add a caveat to what mommy says and that is that core decompressions are done with a needle to let out pressure and built-up toxins as well as to let the stem cells in.
Because a whole is drilled in the bone, the bone is quite unstable for up to 8 weeks, sometimes more. This is often dependant on the size of the core. I believe that this is why insurance companies will not pay for more than one core. Because often physicians use a large bore core so the bone is less unstable and it is more likely TO collapse. This is one reason that CD do not have a tremendously high success rate.
Human growth hormone, bone cement, stem cells can be placed in cores-holes that have been drilled. You should be able to have some say in the matter about the size of the core. After all, it is your body. Run from a physician who says, that “this is the way we do it” and won’t tell you why it must be that way!
However, if your surgeon uses a small core intentionally, the chances that your core will be successful are greater. I don’t know the size of a core that is necessary in the CD of BMAC, but there’s a Dr. Mont at Cleveland Clinic who uses a VERY small core with his CD. In fact patients SWEAR by his CD.
Oh progress can be very fast or very slow. But yes, it can be very fast and there can be a short window of opportunity to get stem surgery. Some surgeons use PRP also. After that, options are less desirable.
My feeling? I know you didn’t ask, specifically, but in my experience and from reading, CD only helps in the early stags of ON for pain and THEN IT IS QUITE HELPFUL. The way I think of it, drilling the cores allows a passageway for gases and necrotic debris to escape, as they can’t escape through the bloodstream because oftentimes a clot is present (or was present). The blood normally carries away these toxins and gases and brings oxygen and nutrients to the bone. In it’s absence the bone dies.
Doing a core will definitely help the pain in my experience and it may prevent the need for a replacement; but oftentimes, it only pushes it off and eventually you need the joint replaced or the cores filled in with bone marrow (BMAC) in hopes that the bone marrow stem cells will stimulate the regrowth of healthy bone. There are other things that can be placed in the cores, but CD alone usually only helps for pain, as far as I can tell. Pain can be horrible though, so it should be considered.
Thanks so much for the replies. Let me provide the latest update. On May 20, I was on a drug cocktail therapy of the following drugs by my OS and Rheumatologist:
1. Alendronate 70 mg once weekly
2. HCQS 400 mg daily
3. Vit D 60k units once weekly
4. Calcium 500 mg daily
5. levothyroxine 125 mcg daily for next 2 months since my TSH levels were high (10.1) and need to be brought down to 5 though T3 and T4 levels are normal.
6. Ultracet – pain analgesic (paracetamol and tramadol combination) for pain relief.
In the last 4 weeks, my condition improved remarkably. Hip stiffness has disappeared completely along with joint pains. No groin pain or tingling in the buttocks. Flexion exercises show full restoration of movement in the hip area. I opted not to go for CD surgery (that was planned for June 11) since there was marked improvement. The doctors too agreed with the same and so now I am continuing drug therapy with periodic once in 2 months review. Surgery in my view in the last resort when everything else fails. The surgeon now says that my case may not be AVN but probably transient osteoporosis. A repeat MRI will be done in August.
Hi Shailesh,
Good to know that yours could be a case of transient osteoporosis that heals on its own without any surgery.I was also diagnosed with avn but in Early stages it is difficult to differentiate.just wanted to check if you had pain in both hip joints or only on one side and if you are completely pain free now..I am in Mumbai, India. We can chat up on phone if you are ok . My email I’d is ashishpahuja50@gmail.com let me know your contact details.
Ashish
Hi Ashish, thanks for the mail. You may reach me on 09008930920. Thanks.
heyy ashish. I am too a AVN stage 3 patient. Would like to talk to you. If you can give me your no. my id is h.goyal@outlook.com
Hi Shailesh,
Good to know that you have so much improvement. It just gives some hope for somebody like me who has a similar problem as yours.
I was diagnosed for AVN on MRI, since the X-ray did not reveal. I have stage 3 AVN on my right side and stage 1 AVN on my left side. Right hip has restricted movement with pain while folding the leg inside, able to walk with a slight limp, often find stiffness in the morning. Left side is asymptomatic.
The OS recommended for CD on both sides with 50%-50% chances of recovery, I did not want surgery as i have read mixed reviews on the success ratio. The thought of THR is really scary.
Therefore I decided to go for Alternate medicine i.e., Ayurvedic. I am under treatment and finding it useful as it has given me some relief, but as you would know the Ayurvedic path is slow, and we never know how fast the AVN is going to progress.
Though I hope that Ayurvedic helps me, but at the same time want diagnosed aproach to monitor the cure.
After reading your post of June 20, i too would want to have a medicine therapy. Request you to please share the Doctor details so that I too can get the problem checked and hope for cure… just like you.
I am in Bangalore. I shall be great full, if you also can guide me.
I have stage 3 in both hips. which ayurvedic medicines you took.
We provide complete cure from avn. Its 8 months classical ayurvedic medicinal treatment.
After this treatment, you need not to go for any kind of surgery.
Thanks
Ayurcure Mumbai
WhatsApp no. 7208732470
http://www.dnaindia.com/health/report-hinduja-doctor-finds-a-cheaper-way-to-treat-hip-necrosis-1653637
Hi! I’m looking for any info you can give me regarding TOH (Transient Osteoporosis of the Hip). My son was diagnosed with AVN of the hip, but he has started feeling better. One doesn’t get better with AVN, so we’re hoping he was misdiagnosed. Do you or anyone on this blog know of doctors in the Washington, D.C., USA, area that know about TOH? Thanks!
I’m going through the same thing mines might have been worse.. at one point it was hard for me to walk or lift my arms up high…i had a 3rd option first doctor told me I needed surgery….he just wanted money….my other 2 orthopedic spine doctors said no…. if u get replacement surgery now u will need it 10-15 years again…. now i just dont eat any fried foods with grease…. no sugar no bread…. calcium keeps the bones strong…. and i try to rest the joints as much as I can….im not 100% cured but I feel improvement…. it’s all bout the way you diet… naproxen is good to for imflimation….. I also use black seed oil…. u have exersise but also rest the joints when needed…
Hi, I am new to the site. I am a 74 yr. old female and I have AVN in my shoulder. I fell and injured my right shoulder. Waited a year and had Rotator Cuff Surgery. Then “I” re-injured it within 2 months. So another year went by and I had Rotator Cuff Surgery again. Within 2 months, during a simple hospital procedure (nothing to do with shoulder) the hospital injured same shoulder again. We are now 3 years into this mess. My doc. wants to do Total Shoulder Replacement. No treatments – just Surgery. I am really worried that with no blood getting to the Humus bone – how will this heal? I think there must be some Treatments out there – But what/where. The TSR is not scheduled yet, but probably about 6 months away. I can’t handle any more shoulder surgeries, I just can’t. Any suggestions? I am open for anything…………
Grandma
Hi Grandma. I’m 63, so not far behind. About 5 years ago I had a partial shoulder replacement. Granted a partial is NOT a total, but the healing of the wound is not a hard process. The wound healed (even though it’s a deep wound) well.
What takes the time is getting back the range of motion to your shoulder. It takes time and effort. When I had mine I was no spring chicken, but the physical therapists were patient and taught me all I needed to know. Getting 80 % range of motion took about a year and 18 months for 100%, but now there’s about 5% that I’m lacking. (let me tell you, there was jubilee and there were party hats when I was first able to put something on a hanger and reach the rod in the closet!)
But as far as how the wound heals; when the body loses one form of circulation it develops another, what is called a collateral circuclation. This is what will happen in your shoulder, collateral circulation will develop and I even think they utilize a sterile mesh that helps the process along. There are other ways to help the wound revascularize so that it heals.
Aiding revascularizing is something that is one experiemental treatment, It is with a coral matrix and it is grafted or injected into the joint. The hope is that the blood will follow the likes of the coral, (because the coral is porous) and revascularize. It’s been years since I’ve been practicing, so I don’t know if they use this methode still, but last I heard, it was still experiemental and researched. However, I was a guinea pig!!
Best thing to do, I think, is to ask your orthopedic surgeon or your other doc and get the straight scoop. I’m hesitant to give advice on these forums because I’m a nurse, but, retired/disabled.
Still, I think I’d want to hear from the person most well-trained and who has your best interests at heart. Might be your doc’s NP or PA, your OS, or PCP. But, that’s one for the docs!
Good luck, Annie
Grandma, I wouldn’t sit too long on making a decision. You didn’t say if you had traumatic osteonecrosis, a messed up shoulder from the messing around inuries and all, or what caused the problems.
However, it’s been my experience that if the cause of problems in the shoulder are due to ON, then it can and often does, progress quickly. I went from completely no pain to stage 4 of ON in 12 mos. During that time, my options had decresed to ONE. Replacement.
We provide complete cure from avn. Its 8 months classical ayurvedic medicinal treatment.
After this treatment, you need not to go for any kind of surgery.
Thanks
Ayurcure Mumbai
WhatsApp no. 7208732470
I have a stage 4 metastatic breast cancer and received 13 iv treatments of Zometa in 1 year. As a result, and after 6 months of being followed by an oral surgeon because of severe pain and bone protrusion in my inside jaw, and having a special blood test, it appears that I am at severe risk and very likely have ON of the Jaw. I have moved to the Northern Virginia area and am looking for a specialist who has knowledge of ONJ treatments. I’ve had difficulty finding someone who does more than just oral surgery, and the doctors recommended by my oncologist are basically just dentists. Any recommendations?
Yes, hyperbaric oxygen treatment can be effective for ONJ.. Oral surgeons generally Rx and insurance pays. Might try looking under Wound Care or calling hospitals to see who has hyperbaric oxygen centers( usually within Wound Centers)HBOT, then ask what oral surgeons send people there and go to one of them.
hi karen I see that your note is from may 2015.. What U have going on in your jaw is a very serious condition.. many women taking forteo for osteoporosis also get that problem then need surgery to remove the jaw bone..and most likely need a cadaver bone put in.. also will need new teeth in that jaw area..its a complicated and big surgery. If I were U i would look for a major cancer center in your area..for their advice.. I dont think your onco is taking this issue very seriously..wishing U the best..!! Hope
Hi Karen, you posted this quite awhile ago but I’m finding myself in your position right now & would like to hear about what you have learned so far re: BRONJ. Would you pls send me an update? Thank you so much!
My question is this: Is there anyone out there with AVN that has had joint replacement(s), still experience a lot of pain?
I recently have had bilateral total hip replacements and bilateral total knee replacements. I am definitely overweight and know that is not helping. I have been to pain management for several months now and they can not seem to control the pain. My orthopedic surgeon has ran several tests and can’t find anything wrong. Is there anyone that is experiencing this same pain??
Have you gotten second opinion?
You can take your discs of radiology to another surgeon to see why they thnk.
Read up on TURMERIC – It’s an herb. You can buy it in pill form, root form or powder at most health food places or on the internet.
My cousin suffered from Chrones Disease and started taking it – it helped her back pain and sleep. So I started taking it for my Avascular Necrosis (the Humas bone is DEAD in my right arm and I have already had 2 Rotator Cuff surgeries and WAS looking at Total Shoulder Replacement…. Now I am controlling the pain with Turmeric and Advil. Two months ago I was screaming for surgery – not any more! I am a 74 yr. old female.
Hi Grandma, I am a 61 year young gal with AVN (not sure what stage) in the left hip following a roller blading injury 12 years ago. I still have 3 titanium screws, well-placed. I was diagnosed 4 1/2 years ago. My ortho only wanted me to do a THR, he had been pushing surgery on me for several years.
We parted ways and now my only physician is a naturopath/chiropractor who is certified to administer Prolozone shots.
I started on Prolozone shots and they are supposed to be miraculous, especially for oxygenating the bone. I have read that hips can be the least responsive joints however, and I have not gotten the pain relief I had hoped for. My Physical Therapist suggested them to me after she witnessed some incredible improvement in some of her patients from just one or two treatments. I had been considering Hyperbaric Oxygen treatment as I had seen some amazing studies regarding HO and AVN improvement. Prolozone is also oxygen therapy localized. And much much less expensive. (Of course, it’s not covered by ins.)
The pain is manageable, I still walk and do a modified yoga practice. I don’t take any prescription or over-the-counter medications. If desperate, I will take a Tylenol – aspirin and any Nsaids hurt my tummy.
I am almost as fanatical about natural remedies as I am opposed to pharmaceuticals, so I was happy to hear about the Turmeric. I do juice it fresh every morning in my fresh veggie juice, but have only been adding it for about a month now. Would you please share with me the kind and amount you are taking? I would very much appreciate that!
Thanks for listening, and for your time and compassion in posting on this page.
Cynthia
I have had 3 joint replacements and am looking at a 4th. After my knee replacement I had and still have (it’s been 8+ years), I had pain. And pain and did I mention, pain??
Went to the OS who said it was fine, several times and eventually switched OS. The second fellow said that arthritis commonly develops in the knee that has been replaced. I’ve tried synvisc, supartz and cortisone injections, but what helps the best is tylenol (can’t take NSAIDS).
In addition, when a joint is replaced, my understanding is that they replace the JOINT. There are other surrounding bony structures in which the ON can ‘hide.’ Those aren’t replaced. They can have arthritis in there or that bone which is not replaced can have ON as well.
Bones that don’t have joints can also have ON. It’s not just a disease of the joints. It’s a disease that can attack ALL bones. So you might have it (ON) in your tibia or other long bones. Granted, when they do joint replacements on ON patients, they’re usually using a long stem so the surgeon can bypass the area of dead bone which often is beyond thej joint. This is common in knee replacements, hip and ankle replacements.
I’ve had a knee replacement for ON and I felt that the excrutiating pain meant that the TKR didn’t WORK. Au contraire. When they do the replacement they do the JOINT. Osteonecrosis can also be in the bones.
However, it was found that the pain I was experiencing, and it was pretty bad, was from osteoarthritis which had developed in that knee. It felt like there was a hot poker poking from inside my kneecap to the outside-and was no fun!
Hi , I am on here because my son had ON, but regarding your Crohns, just wanted to share that there are a few things that might help you get off steroids if you haven’t already done: low dose naltrexone, earth product by earth force, fecal transplant( although it need not be a surgical procedure). I was humiliated by someone on another site for sharing these things. I would prefer sharing them and risk helping someone.
Yes, I should have added Tumeric to my suggestion
Of LDN, fecaltransplant, and Health! I actually just gavel Crohnes friend a bottle if Tumeric this week, but it was because his joints were very inflamed from the Crohns. ( I hope people understand we are discussing Crohns help because of its relationship to steroids, which causes AVN. I hope I fo not get yelled at for these things that have helped some
People – or even cured Crohnes forever)
Dear Judy in KY. I was trying to digest your post about the AVN. Mine is multi-focal in most bones and 7 joints, but I’ve only had 3 replaced.
I was reading along and saw your story about the aneurysm and heart-lung machine. If they can’t use that machine you will be dead and if you need to be off for 45 minutes, there’s no coming back. Please check with your doc; did he likely say you’d be off normal breathing and ON the heart-lung machine for 45 minutes?
Cells can’t live for 45 minutes without the oxygen that the blood supplies and the only way to supply it is WITH a heart lung bypass. There’s the possibility that I’m misinformed, or nursing was that long ago, but certain things you never forget.
Not all of them are non-cognitive docs. You may have to search to separate the wheat from the chaff, but so, you do it. See docs until you find one that you ‘click’ with and come here for questions to ask him so that you have the questions to satisfy you that he/she”s the man for the job. I’m a nurse and have seen good and bad docs along the way, but it’s hardest to remain objective when you’re the patient.
I was minding my own business, reading my e-mail when a conversation turned to a topic, both personal and professional. It was your post about your ON and your son’s Crohn’s. I have ON and lupus. The docs aren’t sure of the cause of my ON. Was it the steroids I took when lupus was first diagnosed or was it the lupus-or neither?
The jury is still our and perhaps they’ll never know, but I’m told that it is entirely possible for lupus to cause ON. It is also entirely possible for a side effect of lupus, Antiphospholipid Syndrome (try saying that one 5 times and rubbing your stomach and patting the top of your head!)
There are also blood disorders that can cause the clotting mechanism to fail so that clots form more easily. If this is the case, the clots can cause ON.
I know your son has Crohn’s. but is it genetic? I know of at least one blood disorder that is genetic? As you know, if someone has one autoimmune disease, the likelhood of another is much greater; since the Crohn’s is autoimmune, could you have developed blood disorders and because many of them are genetic, could you have passed the genes down to your son, who developed Crohn’s and ON?
It is speculated that my Mother had Factor V and she passed the gene to me (lucky me) and this wasn’t discovered until they did substantial blood workup when I developed several blood clotting disorders. Annei
hi there wanted to share my story, I was diagnosed with avascular necrosis of my left hip in 2008 at the age of 9 years old just after I turned ten I got a metal frame put in with six pins (still with scars) I was in hospital for about 4/5 weeks . I had to get it out earlier as I came getting infection in my hip because of it so my doctors decide to take it out and it was really helping me, for about a year I was still in pain but dealing with it taken a lot of tablets. In 2009/2010 I was diagnosed with avascular necrosis in my right hip I got an operation done ( I can’t rember the exact word for it ) I was in hospital for only a week and a half at first it did help me but fast the few months of that year I didn’t do my doctor decide to take me back in and injected me with something that made me have no felling in my hips, I got a lot of help of a psycho which did help me I had more movement than I did in my right hip. I was in and out the children’s hospital for 6/7 years. I was in the new paper. From this day one I need to get two new hip replacements done but my doctor doesn’t want to do them till am older I am only 17 now , I was at the hospital a few weeks ago as now I am in a lot more pain as its getting worse the doctor said and I have the choice to get my hip replacement done earlier I just need to think about it.
My son had FVFG At Duke and it did work for him. Have you looked into stem or FVFG?
Hi there nope. I am currently recovering from a hip replacement
Due to previous injury, and nursing my. Left knee along for 20+ years,I finally decided enough was enough. As I was awaiting the insurance company approval for a replacement, I experienced sudden and severe pain in my right hip.
After 2 months of being treated for sprain/strain, without any trauma, I had an MRI. The surgeon said he was surprised to see AVN., as I have no risk factors.
I questioned if my 20+ years of compensating for my left knee, could have had a cumulative traumatic effect on my right hip. Basically, got told, no insurance company would buy that.
I ended up with core decompression on right hip in April 2013. Was told I might get 5-7 years out of it. And six months later had my left knee replacement.
That was disastrous due to infection. Prosthetic joint removed; long term IV ABX; and gaining yet another issue- ill woodland tendonopathy. Seven months later, got another prosthetic knee joint- long term, left with kne contacture.
My right hip and buttock continue to be painful. Lately the pain is worsening. I question of recurrence of the AVN. But, feel as if my concerns are falling of deaf ears. Any suggestions on finding a practitioner to look closer?
Am 20 and newly diagnosed with AVN (left head of femur). The doctor says its still at an early stage. I want to know what else I could do to allow for it to heal and function again apart from the use of clutches.
I would try stem type injections or surgeries while it is early stage. Peggy
I’m suffering with pain on my left hip with Osteonecrosis (Avascular Necrosis) & need treatment. I would like to know more information about AVN , symptoms, cure, medicines, precautions to be taken, Any clinical trials ..etc.
I would appreciate if some one can help me to find good doctor in New Jersey area if not New York so that I can travel.
Dr RJ Sierra is at Mayos in Rochester. Dr michael monte is in Baltimore There are others listed. I have listed several for people but have been responding incorrectly, so my responses don’t make sense…
I am not familiar with jersey docs. Have never seem a jersey doc listed. I would not recommend going to a surgeon who does core decompression on hips without doing stem or something like stem simultaneously. Also I would generally avoid the watch and wait ones( at least very limited) and the ones who offer hip replacements without alternatives in their tools box such as stem, Prolotherapy, etc and FVFG. If they do limbsaving techniques, but feel you are not a candidate, that’s different.
Peggy Loflin 865-661-6900
It is comforting to know that there is a doctor that truly understands Avascular Necrosis/Blood Clotting disorders. Not too sure where I should start. But, I’m going to bypass all the doctor appointments I had that were unsuccessful. Bottom line, I had a left-hip replacement and right-shoulder replacement 6 weeks apart. And, then a year later a right-shoulder replacement. It concerns me to know that many doctors are not educated more with this type of condition. My pain got so bad; I took myself into emergency and was told to take vicodin. I told them something is wrong (ok then follow up with your doctor….been there – done that)!! A week after that, I did not know who to turn to. The pain was off the charts. I left work drove to my gynecologist’s office and said I have to talk to the doctor and of course I was told I did not have an appt. I said I am making my own and I need his help in directing me to the “right” doctors. They put me in a room. He came in and I explained what I have been going through and I can’t take the pain anymore. I need your help and I am not leaving this office until I am sent to the right doctors. The nurse left, returned and said to the dr. they can get her in to the neurologist in a few days. He looked at the nurse and said I will make the call if needed, I want her in today. Within 10 minutes, I was told where to go and I was seen immediately. After that doctor ran her tests (EMG, etc.), I knew she knew something. She said “I want you to go directly to the hospital for me and I will make the call to schedule you for an MRI.” So the MRI was done that same day.
My left-hip and right-shoulder were diagnosed with Avascular Necrosis. Then I was told to get to an orthopedic surgeon so all test can be discussed with me. On top of all of this, I wanted a doctor that cared about their patients being. I finally found one through a friend. He is an older doctor but man he knows his stuff, is thorough, took the time required and helped me through a number of stages. Many kept telling me go to a younger doctor….said I had that experience already and I was told I had restless leg syndrome. I went with the older dr who is now my hemalogoist and primary doctor. He has told me that I will need to be on Coumadin for the rest of my life. In addition, he found I was Factor V Leiden. The journey has been difficult, severe pain, doctors that were not knowledgeable (did not take the time to listen because they have a lot of patients to see!?!!?), no answers to how/why this happened.
I’ve kept my head up and worked hard to recover. Believe me everyone who is afflicted by this condition, my heart goes out to you.
Wow! Who is this fantastic doctor???
I was diagnosed with AVN in my left knee, 2013 total replacement in 2014, I know have swelling in that knee on top of knee and in femur, orto doc says its avn in femur also. I also have in in right knee, and I was told last Friday OCt 23 2015 that I will just have to live this way. I am not seeking a doctor to help me, I will raise the money to get to him for treatment, I can not live this way. Help!!!
I’m new to your site. Several weeks ago, during my RA xrays, they found AVN in my left hip. I have the xray results, seems like stage 2 but I won’t see my doctor to discuss till later this week. I’m assuming I will be referred to an ortho from my pain management doctor. I noticed today my pain changed, much more pressure in the hip. I work in a distribution center and walk miles every day, plus up and down the stairs as well as stand for hours at a time. I was wondering if I may have developed a fracture now? I appreciate any information that anyone can share. Thank you so much!
Ouch! I am sorry you are dealing w this w such a demanding job. I hope you can find a good AVN ORTHO convenient to you. So many of us have had to travel. Keep us posted.
Peggy
If u are in stage 2, and want any chance of saving you’re hip, stop walking so much and always use a came so you don’t pit pressure on your hip. Otherwise, ur hip will start to collapse and the Bone Marrow hip compression will be less likely to succeed.
Have the doc give you note and go and buy a cane. My brother was in same situation and the idiot doc didn’t tell him anything about using cane or that there are alternativesome besides hip replacement.
Chris81,
Try Dr. Joseph Lane at Hospital for Special Surgery in NY. He does hip core decompression using bone marrow.
Vijay,
Thanks for the reply. I have pain in my left hip since May – 2010 have operated with core decompression by doctor in India on left side in 2012.
Doctor diagnosed it as AVN left hip FICAT and arlet Stage-II.
I tried to get appointment with Dr. Charles N. Cornell at Hospital for Special Surgery in NY several times waited for more than 2 months. Also sent him my previous medical prescriptions with MRI report. Got message from his personal assistant that Dr. Charles N. Cornell is taking up only surgeries cannot do further diagnosis for Avascular Necrosis (Osteonecrosis).
I will try to get appointment with Dr. Joseph Lane at Hospital for Special Surgery. Did you had appoinmtent with Dr. Joseph Lane or came across through acquaintance ?
i have hip avn both sides for last 14yrs i walk for 6km daily regularly i limp but dont have pain. only muscles spasm can be corrected by exercises.i 48mbbs dont need op.today.want to share c others expierience
I would like to speak more with you about this if that is okay. If so, would you please give me a phone number or some contact way to reach you? Thank you so much.
Dear Madam Cynthia cashin Our WhatsApp no. Is +91 7208732470. You can contact us at this number. Thanks Dr. Vinay kumar Singh Ayurcure Mumbai
On 13 Aug 2016 5:37 a.m., “Osteonecrosis (Avascular Necrosis)” wrote:
> Cynthia Cashin commented: “I would like to speak more with you about this > if that is okay. If so, would you please give me a phone number or some > contact way to reach you? Thank you so much.” >
Hello, I am Akshay from Mumbai…..can you please share your email address or mail me on akshaytigde@gmail.com
hi i m 48yr old have hip avn since last 15yr.i am mbbs did strenous work throughout life doing well.uptill now no op. needed
I got Dr. Lane’s contact from an acquaintance of his who was doing trials of a new treatment for AVN, dr. Gangji from Brussels. If you already have had a core decompression, I am not sure if another one is possible.
I am 19; I was diagnosed with brain cancer at 17. The steroids I had to take during chemotherapy gave me avn. I haven’t had surgery yet, but they say I’m not old enough to get THR surgery. They’re going to drill holes in my hips.
Oh my gosh. I’m so sorry you got AVN on top of already having to deal with cancer. How bad is the pain from AVN? How long do they expect you to wait for an replacement? Have you sought out multiple opinions? Drilling holes is core decompression. There are mixed feelings about it, some people claim it works but a lot of people don’t. Unless they are going to use stem cells. Research treatments for AVN as much as possible. Educate yourself, a lot of doctors don’t know a lot about AVN. Seek out experts even if you have to travel.
Hi. I was diagnosed 3 days ago with AVN, I’m 19, and the steroids I had to take during chemotherapy gave me it. The doc says he’s not used to seeing it in my age group, he’s going to discuss what he will do with his colleagues, but he says I’ll likely going to get a bone graft, because I’m too young for THR. Yeah. I’m kinda scared.
I was diagnosed with AVN of the left femoral head in February of 2013, at age 29. I began having severe left hip pain in January 2013 at about 34-35 weeks gestation with my 3rd child. The pain was so severe I was unable to walk at times, and the last 2 weeks of my pregnancy were complete misery. Since I was pregnant, they were unable to image my hip, so I was c-sectioned a week earlier than anticipated, so we could get some answers. After delivery, I immediately had an x-ray which was unremarkable. 3 days later when my C-section staples were removed, I had an MRI which showed AVN with bone marrow edema. Although the MRI showed AVN, the orthopaedic surgeon I was seeing, called it transient osteoporosis r/t the pregnancy. He anticipated that it would reverse itself with time. I spent the next 3 weeks in excruciating pain 24 hours a day, and unable to walk. My only option at that point was narcotics, which I was against because I was breastfeeding, so I began going for acupuncture treatments for pain control (helped temporarily- approximately 1 hour of relief per visit, but 1 hour of pain relief was better than none). I even tried auricular therapy, which is basically a form of acupuncture on your ears. At 3 weeks postpartum I began to see a functional medicine doctor. He recommended Prolozone injections (essentially injections of oxygen/ozone into the hip joint). At this point I was willing to try anything, so I went for it! After my 1st injection, I didn’t notice any difference. A couple days later I went for another injection, and once again, I didn’t notice a difference. That next morning when I woke up, as I was sitting up to get out of bed, I realized that my abdomen was still sore from my C-section 3 1/2 weeks prior. (Until that point, my hip pain was so severe, it masked any pain from the C-section). As I stood up, for the first time in over 2 months, I was able to tolerate the pain in my hip. It was definitely still there, but it was tolerable! I walked to the bathroom with tears streaming down my face, thanking the lord that I finally had some relief! I went for a few more injections in the following weeks, but stopped going because I was no longer getting any additional relief. My pain level went from a 10/10 on a pain scale, to a 4/10. I could handle a 4/10, compared to the hell I had been living prior. The more active I was, the more it hurt, so I just learned my limits. 6 months after I was first diagnosed, I had a repeat MRI which showed no change with the AVN, but I no longer had the bone marrow edema. At this point, it was officially called AVN and no longer transient osteoporosis. I was then referred to orthopaedic surgeon that specialized in hips. 6 months later (1 year postpartum), I had yet another MRI and it once again showed no change with the AVN, but I now had a labral tear as well. We scheduled surgery for core decompression, grafting, and a labral tear repair for July 2014. Surgery and recovery went well, but I still have pain in that hip. It is tolerable, but it is there. My little guy will be 3 this month, and it blows my mind that 3 years have gone by since this all began. I am just wondering if anyone else has experienced AVN during a pregnancy. My husband and I would love to have 1 more child, but I am terrified of it happening again. Any advice?
Do you still technically have AVN? I had a baby 14 months ago. I didn’t think I would ever be able to have a baby. On an MRI my AVN no longer shows up. I am effectively cured. However, four months postpartum I started having a lot of pain in the same exact area where my AVN was. Not to the excruciating, horrific extent that it was when I was first diagnosed with AVN, but unfortunately I had to go back on pain killers. I’ve been able to cut down on pain killers the last few months, but I’m not back to being where I was when I got pregnant. At that point I still had chronic pain, but it was minimal and I had learned to live with it and had a very normal life. I’m very confused as to why having a baby increased my pain when AVN no longer shows up on an MRI.
Hello, I’ve been recently diagnosed with AVN/ON in my right hip and they also say they see the beginnings in m y left hip. I’m 32 and have been pretty active most of my life, so it was a bit of a shock when I told my doctor I had some soreness in my in my groin/hip area and no here we are after an X-ray and MRI.
I meet with my doctor tomorrow and hope to get more detail on progression and possible treatments. Mine is believed to be idiopathic as I can’t recall any trauma to the leg, didn’t take steriods with the exception of 1 day round of prednisone. If my right hip hasn’t progressed to stage III yet, I am hoping I can at least pursue some of the tests and possible proposed treatment by Dr. Gleuck.
I’m hopeful to avoid Total Hip Replacement at such a young age, as the tought of having a first revision in my 50s (if not earlier) and then a subsequent 3rd revision is quite scary.
So far I have found this site to be a great resource.
Have you had blood tests to check for clotting disorders? I would do that first and foremost.
I have been in contact with Dr. Glueck and am working on getting all blood work completed so I can share with him. It’s been a struggle, going on about 5 weeks now – long story short because he is out of network for my insurance I had to get a doctor locally to see me and order all the labs so I could get them covered with insurance. I couldn’t get them done at a Lab Corp or Quest. My local hematologist ordered about 2/3 of the tests Dr. Glueck indicated on his forms and suggested that some of the tests are at a more granular level for some of the tests already being done and wouldn’t require testing unless the less granular level showed abnormality.
Hi Everyone,
I was diagnosed with ON of my fibular sesamoid bone in my left foot post a fracture in July 2015. Despite conservative therapy I have been dealing with progressive pain throughout my left leg, all the way up to the hip at times. I am
Scheduled for surgery to have the sesamoid removed , but I am very concerned about why I have pain through the the knee and hip. Can this progress and should I have further imaging of my left leg?? Thanks for your time.
Jeannie
Im 77 and ia had a fracture in the talus in my anckle, after having MRI,Bone scan,X-Rays I decided to have plasma rich in growths factos, thinking the will help me. Some how i have lots of pain and cant walk.I went to another OS and told me I have Avascular Necrosis in the talus.
I wonder if it was for some reason from the plasma they inyected me.
It could be from ANYTHING. It could be from the fracture itself, a traumatic AVN, it could be from the PRP. There are tons of ways you can get ON. Have you taken steroids for a condition? Do you have blood clotting disorders? Autoimmune conditions like lupus? Do you have sickle cell edema? Do you have Gaucher’s?
Instead of wondering about the causes, I’d be more concerned about the treatment, and I’d want to hear about those proposed treatments from someone I can trust: https://ryortho.com/2013/10/the-top-26-foot-ankle-surgeons-in-north-america/
Hi all. My 16 y/o son has AVN involving both hips, knees, and ankles resulting from steroids and chemo to treat his leukemia. Would appreciate any comments, particularly any recommendation of a surgeon/facility that provides stem cell tx. Thanks for any help. I can be contacted at arpeters30@gmail.com.
Hello, I am 26 yrs old living in Mumbai, India. I was diagnosed with ON when I was 10 and had decompression surgery when I was 18 yrs old. Surgery was effective and was able to perform routine activities. My doctor had suggested me to built up strength in muscles so, they can cover up for hip joints. But, now a days I am feeling stiffness in my hips and neck. Can someone suggest me if there are any particular exercises which can help in reducing stiffness ( I am again starting to go for swimming in few days ). And ideally what could be the age upto when I can postpone hip replacement surgery.
Hi 15yr hip avn cout op.doing heavy exercise.i m 48yr mbbs doctor doing well conservatively.if want meet m chat on mail id.
My hip avn story inspirational to others.last 15yr doing 6km walk daily no pain only limp no op. .i m mbbs doctor from pune dr atul atre.can chat me.
I successfully overcome hip avn 15yr cout op.on physiotherapy.u can get inspiration.i m 48mbbs doctor.dr.atul atre pune india.
Hello friends, I would like to share my story…I was suffering from Avn stage 2 bilateral since October 2015.i had changed almost 30 doctors which includes allopathy and homeopathy as there was no improvement I had to go for an Ayurvedic treatment n after 8 months course MRI showed normal with no AVN Hip..Friend I just want to tell you that Avn is such a disease that even if you go for core decompression, stem cell therapy or hip replacement surgery it wil not cure..if u’ll genuinely need help then you’ll can contact the doctor through whom I have taken the treatment ..trust me you’ll see the difference from very first dose..if anyone need any info can contact me via email ….sumithot123@yahoo.in
Hi I am six weeks out from hip decompression still acing lots of pain. When I went for my 4week post check up my doctor yelled at me because I smoke told me to go home and throw my cigarettes away and quite cold turkey. He was very rude and I did not hide the fact that I smoke. He said the decompression would not work at all if I smoke. Now I’m in really bad pain and I don’t know if this is related but I woke up today and I guess I wet the bed. I called the doctor he’s not in his assistant dose not know anything about the procedure he did and to come in next week when he is in. For one thing I am afraid too see him and I don’t know what to do. Could it of collapsed and should I wait to see him or go to the hospital.
What a mean doctor!! If he wanted to help You quit, that would be nice !! I have not found ERs to Be helpful for AVN..
Can u go to another doc?
Hi .. I was being treated with conticosteroid for submucous fibrosis of oral cavity in year 2011 later I started gym workout since 2014… Last year I have taken cycle of anabolic steroid for 6 months.. Now I m diagnosed with AVN … Can u plz let me know the cause of AVN . Is it anabolic or conticosteroid … And it is at stage 2 … Can it be reversed with medicine.. Plz suggest me medicine
Causes are many. Basically anything that can cause the blood to form a clot so that it stops the flow of blood to the bone so the bone is deprived of oxygen and nutrients > death of the bone, can cause osteonecrosis (ON).
Clotting disorders, traumas to the area, steroid medication, graves disease, lupus, factor V Leiden (Cassandra does a good job of explaining how, but suffice it to say, the blood has a greater tendency to clot.), sickle cell anemia, autoimmune diseases are among a much longer list
I am 46 yr male, diagnosed with Ideopathic Transient Osteoporosis in early April 16.
Since then i am on RISOFOS tablet, taking once in a week empty stomach.
My problem is on right hip in femur. Having mild pain with inflamation. Pain had started subsided but now again after 10 weeks,it has stated slowly increasing.
Have done repeat MRI also on 16th may. It showed significant reduction in affected area. Doc told that it will take minimum 3 months or may take 6 months even to get fully free from pain.
For last 10 weeks, i am using walker for walk and not putting any weight on right leg. However, now even on sitting posture inflamation and pain start in affected area.
I am from chandigarh. Want to know if my treatment is in right direction?
How long it will take to get rid of this desease?
Kishan, How long it will take to get rid of ON will depend on what cause or what is causing it. Do you know? Some causes will never go away, like Antiphoslpholipid Syndrome from lupus, so if that is the cause, until the lupus is cured completely (or Antiphospholipid Sydrome is cured), it’ll be the gift that keeps on giving.
On the other hand, it the cause is ‘traumatic’, (you were in a car accident and trauma to the bones resulted), when you recover from your injuries, you should see the end of osteonecrosis
Dear Krishan, Subhajit, 41 M Kolkata with same problem as yours! pain from june onward and diagnosed AVN or Transient Osteoporosis on August 2016. i;m walking with elbow crutch ever since..however the pain will stay and sharply increase for first 2-3 months…after which in my case it suddenly subsided..the stiffness and discomfort remains so does the edema ..but the initial sharp pain in walking and rest went away. Varies in each case how long it will take to resolve …some say 8-10 months others 6 months ..btw which doctor has diagnosed your TOH ??? can u pls forward me ur mail is cos i also need to consult more docs
Hi, from Cyprus, im 30 years old and i have right hip osteonecrosis due to medicines
i was taking through my pregnancy 😦
Doctors told me that my only option is surgery (hip replacement) but because i’m too
young maybe i will repeat the surgery every 5 years.
What options you have in your country for this problem? Everywhere i go i leave
disappointed. Also i’m unemployed and i cant go to a good hospital to make a surgery
and i have to settle with the public hospital that is not good at all…. This problem made
me very bad psychological and i have panic attacks. I have pains for two years now every
single day and because of this problem sometimes i have muscle spasms. Please, every
information is important for me. What you did about this? How your living is? You also
feel desperate sometimes?
Hi. I am a 46 year old, currently unemployed, (medical sciences) woman with a history of a type of lupus that effects only my skin. I also have Reynaud’s syndrome, upper reflux, possibly irritable bowel syndrome, and am in the process of being diagnosed with Complex PTSD. For the last three years I have had increasing bilateral hip and buttocks pain. It is worse at night, pain also radiates down my thigh, and forces me to rotate frequently. About a year ago my shoulders started down a similar path. The doctor assumed it was bursitis. Recent Xrays showed bilateral osteonecrosis of my hips, and now I am scheduled for shoulder Xrays. I have also had pain in my lower front ribs for the last few years which I attributed to posture (hurts when I am driving, slouching etc.) and I am starting to wonder if it’s actually osteonecrosis there as well. I recently had a negative test for systemic lupus but I am thinking there may well be a connection anyway, given that I am already diagnosed with a type for my skin. I live near Ottawa, Ontario in Canada. My doctor is kind but past history has shown her to be not proactive or timely in her actions on my health issues, so I do a lot of my own research. I appear to have atraumatic, ideopathic, stage 2a osteonecrosis. I have three questions for the people of this forum:
1) Has anyone had similar difficulty with their ribs?
2) Any thoughts on the connection to Lupus even though my recent test indicated that I was negative for systemic lupus?
3) Does anyone know of any really good specialists for osteonecrosis in either Ottawa or Kingston (or Toronto)?
I would appreciate any feedback.
Thank you.
Jessica
Connection with LUPUS? Yes, there is, and it is well-documented. Given that you have lupus, you are also at risk for one of it’s side effects, Antiphospholipid Syndrome in which you blood has a much greater tendency to clot.
When the blood forms clots, the needed supply of oxygen and nutrients isn’t able to get to the bones and they (the bones) can die-and that is what osteonecrosis is.
Now, I don’t know if Discoid Lupus and Systemic Lupus have Antipholsplipid Syndrome in common. But, it would be worth finding out. Also, another risk factor commonly overlooked is Factor V Leiden. In this same blog, Cassandra gives this blood disorder a pretty good treatment.
Hi i myself mbbs doctor48 have both hip avn since 15 yr .its progressed but i walk 6km daily .only muscle spasm n limp r my todays troubles.want 2 know if anyone took stemcells therapy n benefitted.electromagnetic stimulatoon n hyperbaric oxygen r too other therapies.pl.tell m on atulatre2011@gmail.com i wish to live rest of my life without operation.
massive dosage of vitamin D… check thyroid and parathyroid levels.. and your vitamin D level..
I am 21 years old and was in a car accident about 2 and a half years ago and have been having sharp condtant pain in my left upper arm and shoulder with limited movement and was diagnosed with a late stage of trauma related avascular necrosis in my shoulder very recently. I am currently waiting on a consultation. I am really scared and worried and have been feeling considerably low and depressed since I have found out as I do not know much about this condition. Is this 100% curable or will I need to have continuous treatment throughout my life? will this affect my work and my future??
Thanks
Hi,
I am 46 years old female patient who is suffering AVN in my right hip.
I am only hypothiroid patient and it is under control.
i had a pregranacy 6 years ago…before pregnancy i was running 7-8 km per day…(before pregnancy i run only 2 years totally)
After the pregnancy, i started to run…5-6 months i run and then i had a pain on my right leg…
i went to the dr…and he took mri , and he said that i have spine problem…dr gave me a lot physio and i felt few period good…later i went another dr, another dr, another dr…
everybody said that i have spine problem…
october 2015, i was pregnan again and i had miscarriage in january 2016…one month later after second pregnancy , i started to run…
After running i felt pain in my groin and we went to the dr to take mri for my right hip…( it is important to explain that if i run i have pain, if i dont i dont have pain)
After ther mri result, i was diagnosed i have avn in my right hip at the end of II stage.( there is cresent sign in mri but no collapse)..root cause unknown…
Dr gave me fosomax, aspirin, crutches and extra hyperbaric oxygen therapy( oxygen therapy was optional).
I have used fosomax 2,5 months i left because i had a lot side effects( bone pain, my period totally change, )
I finished 35 sessions oxygen, left 5 session…
extra what i am using extra:
-turmeric 3 tablet
-ginger root 3 tablet
-black seed oil 3 tb spoon
-grapes seed oil 3 tb spoon
-flexamin 2 tablet
-vitamin D
-calcium
-magnesium
-lysine
-vitamin for immun system
-omega 3
-kefir
Since 3 months i am using cruthces…
it is strange that if i dont run i dont have pain, it is the same from the beginning…
I am little bit overweight, 93,5kg and 1,72cm…
yes it is obvious that there is problem on my right hip…
dr will take mri 2 months later…
Not to have pain means i am healing?
Pls comment my situation…
Thank you…
Hi all this is my story. My name is Megan I stay in the U.K. And I am 17 years old almost 18!. When I was 9 years old a virus attacked my bones and I got diagnosed with AVN in both hips. I have been in and out of hospital getting different surgerys. I went through a 8 and half hour surgery before. Now I am in constant pain it never goes away I am finally getting my right hip replacement in August . My journey has been challenging but at the end I am getting there. I can honestly go on but this will be a bit long.
Thanks
Megan. X
Hello my name is Jackie browning 12 years ago I was in a car accident and broke my right talus bone in my foot I’ve had a lot of problems with my foot over the years a couple accidents of slipping and falling on this foot causing hospital visits but never having to stay over night the orthopedic I seen back in 2004 never did any surgery on it just put a cast on it and told me no weight bearing for 10 months. A month ago today I got hurt at my job which I work with hogs at a hog farm the momma pig slammed and pinned my foot in her pin when I was trying to save her baby for her killing it by sitting on it my job took me to the dr and they did a X-ray on it nothing was broke that they could tell a week after that I had an MRI done which concluded that I have horrible avascular necrosis and micro trauma and that dr sent me to see my old orthopedic from 2004 he told me he wasn’t going to do anything with this foot and that I’m to live with it take ibuprophren and wear the boot cast he gave me and start walking on it well I can’t walk on it it hurts to much last week I went to my own personal dr and they did a referral to a different orthopedic out of Manhattan Kansas I’m still waiting for a phone call from them to see if he can fix this or if I need to seek out a different dr that will and can help me I’m a 36 year old woman with two wonderful sons one is 8 the other is 18 that just graduated high school in May this year im almost at my wits end of not being able to walk without that boot or crutches and I truly don’t want to live the rest of my life this way thank you for listening to my story and I’ll pray for everyone that is going through this awful bone disease that I to have
Hi im 28, in 2012 oct dignosed with SLE renal failer, aftr treatment of steroids n chemotherpy SLE is under fully cntrol from 2013 septembr. But due to steroids n chemthrpy in 2014 oct AVN is dignosed
Dr recmnd CD. But found no results aftr CD.nw m faceing stage 4 on both side of hipe. Highly painful useing walkr form movmnt.dr recmnd for total hipe replacement but i m not ready ful this step yet. I m trying to cnvence God for help. Plz pray for me that i wil successful in cnvenceing God.
send me a note at ralphpope@mac.com
Do you want me to contact you? Is that why you gave me your email?
His name is Dr. Phillipe Hernigou. The gal I know of who had stem cell (BMAC) from him about 5 years ago, had pain relief for a few months, but now is having pain. The problem might not have been his technique, but as she lived in the US, she was not able to follow up as often as he wanted with trips to france, She might have been forced to put her weight on an unhealed bone too soon.
Depending on where the osteonecrosis, various docs do it/ Cynthia Kelly in Denver at the Denver Clinic does it for hips and knees, Thomas Einhorn of NYC does it, Thomas Lane of the HSS does it, I think for hips and knees. Not sure who else, but I’m sure there are others!
Annie
I’ve heard of them and don’t know a whole lot about them, but I know they’re used. My foot/ankle suggested that they might be one option worth trying, because a total ankle replacement wasn’t an option for my ankle (but it was and I’m pain free in my TAR-ankle!)
Annie
HELLO..I had the HERNIGOU PROCEDURE DONE AT A NYC. HOSPITAL .AND IT WAS A SUCCESS… DR TOOK BONE MARROW AND STEM CELLS FROM MY PELVIS AND MIXED WITH HUMAN GROWTH HORMONES..AND MY DEAD PART OF MY HIP BONE GREW BACK IN A MATTER OF 5 MONTHS..THIS IS DONE IN EUROPE VERY OFTEN BUT NOT MUCH IN THE U.S. HIS NAME IS DR. HERNIGOU.. HE DEVELOPED THIS PROCEDURE..HOPE THIS HELPS U..
Hi i have been diagnosed with stage 2 avn in both my hips earlier this year. I had prednisolone 60mg/day to treat sudden hearing loss in 2011 for 2 weeks (couple days off between the weeks) and for 8 days last year for same reason.
Earlier this year i had an MRI on my hips as routine and my gp was shocked to find i have avn in both hips. I have seen 5 different consultants and a rheumatologist in regards to this and it seems that my left hip lesion size is about 50% and the right side 20%.
I have had 3 MRI’s 1 in Feb, 1 in April and 1 in August they all show that the AVN has not progressed although the orthapedic surgeon i last saw 2 weeks said comparing Feb to August only it looks like it has gotten slightly worse by about a mm just eyeballing it but essentially it has stabilised.
The prob i have is because these are just snapshots of now they cant see historically whether the initial steroids in 2011 caused some damage and the subsequent steroids created more in 2015 all they can see is what it shows now and it is stable.
Because i was on such a short duration high dose prednisolone does that mean i may more likely have some blood clotting disorder?
I went for most of the blood tests listed in this blog but have not been able to get the nitric oxide one or the MTHFR yet but the one that stood out was the Factor V leiden.. because it says even a short dose of prednisone 20mg can cause it i thought i may have this but it came back negative so now i am stumbled as to why specifically such a short dose of steroids can cause this? I understand people are on it for much longer and get avn but i was only on it for 3 weeks total so it’s shocking how sensitive my body is to it.
The Rheumatologist said the good news is that the effects of the steroids damaging my bone are over because the 3 MRI’s are almost identical the bad news he said was that the damage is old and may have been there for a long time and the bone is probably dead dead with no bone marrow or blood vessels left so would be difficult to reverse or treat with conservative measures like medicine ie enoxoparin or other things. If the bone really is dead will there be no blood vessels left inside?
I still don’t fully understand what is happening to the bone or why steroids cause this but i read it is something to do with disruption of osteoclasts and blasts and destroying of osteocytes in the matrix plus fat cell hypertrophy etc. The question is whether not can it still be possible to feed the dead bone with nutrients by using blood thinners etc.
Because i have extensive involvement in my left hip i am surprised it has not collapsed yet, i am 35 so my first dose was when i was 31.
The consultant OS have recommended core decompression but from what i have been reading and what they tell me is it is mainly good for pain relief and may delay collapse. I have no pain symptoms at all bar muscular pains and some referred pain in my groin on the right side from the hip which is ironic since the lesion is larger in the left.
The OS i saw 2 weeks ago who has done some research into stem cells himself said that i am borderline in my left hip whether stem cells would work. I can’t even get the stem cell procedure in my country and have no money to be able to pay for it abroad. The dilemma i have is there is a stem cell trial for this new bone forming stem cell procedure with CD someone else mentioned in the comments from belgium. It is in phase 3 trials but the problem is that it is a double blind study with CD alone being the placebo group. Because i have no pain the down side is very high for me with only some upside IF i get the stem cell treatment. If i had a lot of pain it would be all upside as i would need CD anyway so if i get the stem cell it would be a bonus.
How long does it take to recover from CD surgery and how painful is it? To me right now it doesnt make sense to have CD surgery when my MRI’s show no progress in damage and i have no pain as having the surgery will obviously leave me with pain after as any procedure would and my quality of life affected.
The biggest dilemma i have is this stem cell treatment trial expires in june 2017 and prob will be my only chance of getting it as the OS said that stem cell is very expensive so the health service wont pay for it and even if it does becomr available it wont be for many years ie 15 years.
I am stuck between a rock and a hard place. The only reason i am considering going for thr surgery is because of the time constraint because this may be my only chance to get the stem cell but it is 50/50. I dont want to have just CD alone but i will not know this till after the procedure is done or will i ever know as i am essentially a lab rat.
Of those who have had CD who got AvN due to steroids how long did it last before collapse?
It’s almost guaranteed i will have pain if i go for CD so i feel i am jinxing myself by having it done earlier than needed. Then again people have CD done much earlier for smaller lesions so in that regard i should already have had it by now.
My OS thinks i should last a few years before collapse because the MRI shows my hips are stable.
The other OS said to me that because the steroid has done its damage the next stage is collapse and he doesnt see why the lesion should get bigger as the ssteroids are not active in my system anymore is this likely to be true?
Can the lesions still get bigger and affect the healthy surrounding bone? It appears the steroids damaged the bone and destroyed some of it but the healthy parts still have enough good supply of blood flow to maintain their integrity. I am not someone where the avn is progressively getting worse however it can be assured in my left hip it must have moved from 10% in size to 50% in size the question is whether was it because of the 2011 steroid dose that caused the initial amount and then the 2015 dose destroyed more bone. It is hard to say as i only have a snapshot of it now.
Does anyone know if it is still possible to preserve what i have or does the dead bone eventually weakens and collapses?
If they could guarantee the new stem cell drug they are using for me then i would definitely go for it but right now unless my MRI shows it is getting worse in inclined to not have CD yet. The frustrating thing will be if in a year or so it has gotten worse and i will need the CD anyway i will br kicking myself.
How good is CD for preventing collapse or delaying it for many years? I hear it is only good for pain relief