Hello! This is an evolving blog that I started to educate the Osteonecrosis (Avascular Necrosis) Community and to bring us together so we can share our knowledge and experiences.
There is little research done on Osteonecrosis (Avascular Necrosis) and the causes. With this blog I hope to connect the dots for you and provide answers especially if you were told your Osteonecrosis (Avascular Necrosis) was idiopathic.
I am also going to write extensively about the relationship between Osteonecrosis (Avascular Necrosis) and blood clotting disorders.
Osteonecrosis (Avascular Necrosis) 
I am a 25 year old male living in Fort Worth, Texas. I lived a very active life until I started feeling pain in my groin… here’s my story:
At 23 years old, I started having pain in my groin which gradually got worse and worse. I went to my primary care physician and he took x-rays of my hips, told me I had a severe groin strain, gave me pain meds and sent me on my way. However, the pain continued to get worse so I decided to see an orthopedic doctor 3 or 4 months later. He ordered an MRI (which is the best way to detect early stages of AVN). After seeing the results of my MRI, he told me I have AVN and my life changed forever.
Firstly, I had no idea what AVN was or why this doctor was telling me I needed both hips replaced at 23 years old. I thought hip replacements were for old people! Anyways, long story short, I will just get to the operations I had and I hope it will help people that are diagnosed with this life changing disease.
I was diagnosed with stage 4/5 AVN in my left hip and stage 2 in my right hip. I found a surgeon in San Antonio Texas that specializes in Free Vascularized Fibula Grafts for treatment of AVN. His name is Dr. Mark Katz and works at The Hand Center of San Antonio. He did an amazing job. I was in surgery for 10 hours, hospital for 3 days, and crutches for 6 months. That procedure was the most painful experience of my life… but it worked! I only had a 50/50 success rate because of the severity of the collapse on my left hip. I am very happy that I chose this doctor and this procedure to treat! my stage 4/5 AVN.
I had a core decompression surgery done on my right hip about a gear after my surgery on my left hip. Dr. Katz gave me an 80% success rate with the FVFG procedure since my right hip was only at stage 2. However, I did not want to go through that long surgery, long recovery, and pain that come with that procedure. So I chose to have another orthopedic surgeon to do a core decompression procedure on my right hip since the recovery time was one day in hospital and 3 months on crutches. I did not have good results with this surgery and wish that I would have done the FVFG instead. But hindsight is 20/20.
I have continued to have pain in my right hip and have been on pain killers for almost 3 years. It looks like I am going to have a hip replacement on my right hip soon. I am now 25 years old and will be 26 at time of surgery.
They don’t know what caused my AVN. What I do know is that it has changed my life. I had never heard of this disease before and wish I didn’t know what it is because that would mean I didn’t have it! But I believe God is in control and everything happens for a reason. I’m not gonna preach… anyways, I wanted to share my story/experience with AVN and the procedures I had to prolong the inevitable hip replacement surgery. There isn’t a lot of information or support online for AVN and it feels like I have gone through this alone (my family has been amazing. Just would be nice to talk to someone else with this disease). I hope that this has helped you and I wish you luck with your battle against this shitty disease!
Kyle, do you have any known blood clotting disorders? I’m in Arlington and have starting using the doctors at UT Southwestern. It is good to know about your doctor in San Antonio.
No I do not have any blood clotting problems. My AVN is idiopathic which means they don’t know what caused it. I drank quite a bit in high school and college but not enough to cause this! I highly recommend using Dr. Katz. He specializes in treating AVN. He’s really good.
i used ciaro therapy just like acupressure therapy. this therapy is very useful for AVN. today i am 90% relief without operation. i continue work in computer 8-10 hours in a day.
Sorry for leaving so many comments but please email me when you see my posts. I would like to do anything I can to help with this site. I have lots of information on AVN, doctors, experiences, and much more useful insight that could really help people that are diagnosed with AVN. My email is kylels23@yahoo.com
Kyle, let me know if you got my email yesterday. I sent if from my gmail account cassandraschnupp@gmail.com.
i used ciaro therapy just like acupressure therapy. this therapy is very useful for AVN. today i am 90% relief without operation. i continue work in computer 8-10 hours in a day.
Look forward to your updates Cassandra! (Tony from the FLV yahoo group).
Kyle, good luck to you. Like Rhonda (who is an FVL friend!) I’m a local. In Bedford here.
I’m in fort worth. We should meet up sometime! I’m available on the weekend if anyone is interested. I would enjoy meeting y’all
Yes, we should. Tony and I have tried to meet but have not been successful. I’d love to meet more mutant. I’d like to hear more about AVN and your other health experiences.
Rhonda,
Did you mean to say mutant? I’m not sure if I want to meet you if you are referring to me or anyone else with AVN as a mutant. I hope it was just a typo or a bad joke. Anyways, I can’t meet until the weekend of August 11th & 12th but would definitely like to get a group together. Let me know if you’re interested in meeting on August 11th or 12th. You can also email me at kylels23@yahoo.com
Rhonda, you’re right, how long have we known each other and lived 10 minutes apart? One day, we WILL have to meet (we’ve been saying that for about 7 years?).
Kyle, around the Factor V Leiden groups, we commonly refer to ourselves as mutants. It’s not a slur or meant to be harmful to anyone, it just has to do with the mutated gene that causes the condition. Mutated gene = mutant. Laughing about it is sometimes the best way to keep our sanity. I’ve known Rhonda many years in our very diverse support group, and can say without hesitation she would never deliberately say anything harmful to anyone.
Kyle, I sent you a separate email. I am so sorry! I did not mean any disrespect. I forgot that you do not have FVL like I do. It is hard to live in a world where people, especially doctors, do not have a clue about what FVL is. I gave a lesson in genetics today to a dermatologist.
I do want to know about AVN. Since I have autoimmune issues, I want to be informed about this. I have to take steroids when I have flare ups, and it really sounds like this is not a good course of treatment, based on what little I know.
Tony manages our FVL Yahoo group. We get new folks all the time who ask questions and sometimes have no clue how to help them. Knowing more about AVN will be a personal benefit to me as well as helping others learn more.
Tony’s work schedule will probably dictate when we can meet. I am headed to San Antonio on August 10 for a week to take care of my son in law. He is having foot surgery the next week and I am his favorite nurse. He prefers me over his wife, my daughter! Anyway, it will be good to put names with faces and meet. I live in far southwest Arlington, almost Mansfield. I’d be glad to come to Fort Worth or northward to meet both of you.
It’s fine. I didn’t understand what you were saying. I don’t have FVL and have never heard mutant before so I wasn’t sure what you were trying to say. Anyways, I would be glad to meet with y’all. Just email me when you think you can meet.
I’m so happy the three of you live in the same area. I have actually never met anyone else with AVN (other than on line), or with Factor V Leiden (other my Mom and sisters who also carry the gene). I think it would be wonderful to talk to someone else in person who has lived with this.
We all have a different story about our avascular necrosis. I was 61 in the winter of 2011. I got a terrible cold and saw my otolaryngologist because one ear which has a continuing problem got infected. I was first put on one antibiotic. Then I was put on prednisone at 60 mg for 5 days and taper over a couple of weeks along with Cipro antibiotic. He then prescribed Leavaquin antibiotic. With the last drug I immediately had pain all over my body particularly knees. I then saw a rheumatologist who ordered exrays of the knees which showed mild dengerative joint disease but a signal coming from left knee. The radiologist recommended an MRI. I saw another rheumatologist who performed all kinds of tests and said you have osteoarthritis. I really could hardly work and went for the MRI’s. The MRI’s showed avascular necrosis. The doctor said it is irreversible; it cannot be from such small dose of prednisone; it must be from alcohol. I then saw an orthopedist who wanted to replace knees and said you do not have AVN you have bone edema. I then saw doctors who advertise themselves as experts in AVN. Only one of the doctors I saw said if you have it in the knees, there is a 90 percent chance it is elsewhere and ordered MRI’s of shoulders and hips. I have it in both hips and one shoulder. I then was told I was at stage one and had a 50 percent chance of “success” (which I interpreted meant cure) by having holes drilled in the bones (core decompressions) which I had last June. I then was told in September I was at stage 2. It was suggested to me to have many more cores drilled in my bones. I wrote everywhere I could think and have seen 13 doctors. I am still at stage 2 but my cartilage is bad now in knees. I tried oxygen therapy this spring but got a problem and because I only have hearing in one ear I discontinued that.I’ve asked doctors to do stem cells but there are not many doctors doing stem cells on older people. I joined websites. No doctor has ever suggested I be tested for a clotting disorder. I pursued on my own clotting tests Dr. Charles Glueck recommended. I have a major clotting disorder. I’m waiting for him to return to the country to see if I should take blood thinner medication. I think it very important for all of us with this disease to take clotting tests right away. The doctors should discuss this cause or contributing cause to our disease with us. If you have insurance, the blood tests do not cost very much and the treatment may
help your situation.
Thank you Joan so much for sharing your story. I absolutely agree with you that it is imperative that people with AVN are checked for clotting disorders, which is one of the main reasons I started this blog. Dr. Glueck put me on low molecular heparin and my disease is already getting better. He has a 75% success rate with reversing or stopping the progression. Thankfully your disease has not progressed, so I hope heparin helps regress the AVN. Good luck! Keep me posted when you start therapy, if Dr. Glueck chooses to do so.
how was the post op recovery period after the core decompression? I’m scheduled for March 6 and very nervous.
Katina
osbork7815@hotmail.com
Katina,
Did anyone get back to you? How are you doing/feeling?
I have ON ni almost every joint and have had different treatments for most ON. I’d like to add to the clotting disorders, that people who BEGIN to experience shoulder pain who have ON in other joints, have it evaluated quickly and don’t settle for months of PT. It really could be tendonitis, but it could also be ON and ON in the shoulders progresses quickly. I STARTED having pain in March of last year and by NOVEMBER, what was thought to be tendonitis, had progressed to stage iV and the only thing that could be done was a replacement. Bottom line? Don’t play around; shoulders progress rapidly. (at least mine did!)
My shoulder story with AVN. In 2010 I went to an orthopedist because my right shoulder was very painful. The orthopedist demanded I do 4 days a week physical therapy at his office because of a rotor tear and tendon problem. I knew my boss would never let me be away that much. Six months later of pain I saw his partner who gave me a prednisone shot and sent me for an MRI. The MRI discussed a tiny dark spot. The orthopedist said that is too small to operate on. In 2011 I took prednisone for a few weeks and ultimately was diagnosed with avascular necrosis in knees, hips, and that shoulder. By then the shoulder had the double line which clearly defines avascular necrosis though it had not enlarged. I had holes drilled in my bones including that shoulder June 2011 by a hip and knee doctor specialist in AVN. Sadly he did not put stem cells in any holes drilled which has caused me many difficulties. This February I went to a doctor specializing in shoulders because my other shoulder was so painful I could hardly lift it. He took exrays. I asked him to take MRI’s. He was affiliated with a hospital. He said he would never authorize MRI’s for me and does not believe in core decompressions. He was looking at the one MRI I had taken from 2011 of my AVN shoulder. That MRI was a year old. He then said his exrays reflect I have tendon tears in the other shoulder. I of course sought a different doctor not affiliated with a hospital. He took MRI of left shoulder and it still does not have AVN. I also finally was able to get an orthopedist to redo the 5 MRI’s of five joints including the right shoulder because a year had passed. The right shoulder lesion is larger and is stage 2. Right now I am waiting to hear from a very famous doctor in another country whether I am too old to have stem cells. I will post what I hear. All of the orthopedists were telling me not to worry about my right shoulder with AVN as it is non weight bearing and will not collapse. However, my reading is shoulders do collapse particularly when the lesions are large and you have moved to stage 2.
Joan, you’re right about that! Shoulders DO collapse, even though they’re non neight-bearing joints (at least, most of us don’t walk on our shoulders!) Are you going to see Dr. Herringdon (sp?) in France? I’d love to hear what he has to say, but I don’t have the money for France! Thank goodness my shoulder is done. At 62 YOU are not old. I don’t know about the stem cell thing; maybe they have to have more ‘vibrance’ in them, but YOU have plenty! Annie
Dr. Hernigou reviewed my hip MRI’s and said he’d do the surgery October first. I got a lot of details to work out. But I’m going to try to move a mountain to get there and get it done. He did not mention the shoulder. He can only do 2 joints at a time.
Dr. Hernigou in France operated on both of my hips last year and it was a total success. I am actually about to have both shoulder operated on this week. Now I live in Europe and my insurance covers it but last year I had to pay for it. But it was completely worth it. I went from crutches and being told in the US to just wait until it was so bad I needed THRs, to being absolutely fine now, like nothing ever happened. The whole experience was amazing and Dr. Hernigou is wonderful and clearly a world expert. I cannot recommend him enough. I hear about such horrible experiences and lifelong suffering that most people with AVN have- CD alone is really silly considering the success rate when stem cells are used is so high. Contact Dr. Hernigou.
Hi,
I am 32 and have been diagonized with Osteoporosis stage 0. Could you please help me by sharing the doc referals for Rheumatologist and Ortho who is specialized in this area.
Thank you in advance.
Do you have osteoporosis or osteonecrosis? They are both very different.
Dear Osteonecrosis 32, Which do you have? Osteonecrosis and osteoporosis are two different diseases. There’s also osteoporosis. Different animals! I The specialist you see, depends on the diagnosis. Keep us informed. Where do you live? Annie
I am new to this site and looking for information about blood clotting disorders. I had my right hip replaced 18 months ago and my left hip replaced 3 weeks ago. my recoveries have been phenominal and I am walking now like nothing every happened – same with the first hip. I have no arthritis at all, but diagnosed with AVN. I just saw a rheumatologist yesterday to see if there is an underlying cause and my sister has suffered (misscarriages, etc.) for years with blood clotting disorders. is AVN something that will progress to other joints since i’m being led to think it stops at my hips. thanks
Kathryn,
So glad you found my site. Yes you can get AVN in more than one joint. However, it depends on why you developed AVN in the first place. Did the doctors ever give you a reason as to why you developed AVN? Has the rheumatologist tested you for auto immune diseases lupus, MS etc? Have you had blood work taken to check for coagulation disorders? Sorry so many questions, but they will give me a better idea of how to direct you.
I just went to a theumatologist yesterday and all those tests are now being run. seems like hindsight, but who knew? right hip was totally collapsed on x-ray when it was finally diagnosed, so never did an MRI. This hip was pretty far gone when the MRI picked up AVN, so I was losing that hip anyways. I have to say, after reading some of the stories (especially about FVFG) that sound pretty horrible. Maybe not the best option, but my hip replacements were a breeze and I was up and about the halls on day two, riding a bike in two weeks and back to walking miles by week four. But, that is all behind me now. I have to go forward and am afraid that the knee, wrist or elbow might be next. So, I guess I have to wait for blood test results then? thanks for your support
It’s never too late to find out what’s going on in your body so you can take preventative measures for the future. I take blood thinners for life now that i know my AVN was caused by multiple clotting disorders.
Were you told your disease was idiopathic? Right now you need to find out why you got AVN instead of worrying about whether it will start in other joints. Take it a step at a time. You will drive yourself crazy otherwise. If you don’t mind sharing let me know what your results were.
Cassandra
I will let you know – I don’t mind sharing and appreciate it. I’ve been told nothing. specialists are – well….. – just that. they specialize in THEIR area and i’m all about the “one stop shop” but if you don’t advocate for yourself, you find nothing. If I ask my GP or my orthopedic surgeon what the cause is for the AVN, they honestly can’t answer because they don’t know. so – it’s referred to another specialst and that’s where i’m at. what I do know is my sister has a blood clotting disorder that caused miscarriage and a pulmonary embolism and she was on blood thinners for years. so – there is family history. i’ll keep you posted and thanks again..
Kathryn,
I wouldn’t be surprised at all if you have a clotting disorder, especially given your sister’s medical history and your AVN. I never believed the doctors when they could find no reason as to why I developed AVN. I had to keep pushing and researching until I found Dr. Glueck. When a doctor says your AVN is idiopathic that is just their way of saying they don’t know. There is a reason for everything!
Greetings from KS. I found out yesterday I have extensive AVN in my left knee. I am not sure what stage it is, I was just told it was extensive to the whole knee, and has rapidly progressed in 2 years. I was told it is probably extensive in my right knee and both hips due to the pain I have those areas, although they are not confirmed because they only MRI’d my left knee. I have a history of clotting issues (2 Pulmonary Embolisms, Miscarriage, Placental clot, and a small stroke). I have elevated Factor VIII and elevated Von Willebrand Factor. I also have Bence Jones Proteinura, but no other labs that support any kind of cancer. I have a history of 32 years of on/off high doses of prednisone.
Been told nothing can be done until one of the joints collapses, replacement is to risky and anchors won’t hold long in bones effected by AVN. Basically told to deal with the pain and come back when I can’t walk anymore. He did suggest I see a hemo specialized in dealing with this at Mayo or a University hospital, but I don’t know where to start. In the middle of nowhere KS.
Was just a little shocked by it all.
Kristina,
I’m sorry about your diagnosis. You are not alone. Are you on blood thinners? Why did yor doctor suggest you go to a hemo? How bad is your pain? Seek another opinion. Seek multiple opinions. Get copies of all your discs. Have MRIs of your other knee and your hips performed. Find out what stage your disease is at. DDid you see an orthopedic surgeon? Are you able to travel? Sorry so many questions. Thinking of options for you. It’s not acceptable that someone tell you to wait around until the joint collapses. You need to be armed with as much knowledge as possible. Then you know what doctors you should be reaching out to.
Thank you for your response, I am on Lovenox injections twice a day. I had clotting episodes while on coumiden and pradaxa. I did see an orthopedic surgeon. I am working on getting a second opinion, but want to see my hematologist first. I see him due my clotting issues.
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I was diagnosed with AVN in 2005 and since then have had L-5 S-1! Surgery, as that is what the Dr. told me were the pain was coming from. Well I never had pain below my knee and since then I have been on crutches and wheel chair do to the fact I was unable to use the leg to the fullest extent. It was clearly noted on MRI as an 8mm lesion why he did this back surgery is beyond me. I thought a picture tells a thousand words. Must of been all about Money “By the way I live in Las Vegas” Medical Mafia is alive and is real!!! Only doing what the professionals say and this was a surgeon who later I found out paralyzed a woman who walked in the hospital and never walked again. I would write the Doctors name but afraid for my life. I then went to another surgeon who Implanted a Spinal cord stimulator to help with the pain going all the way down to my foot Numb all the time. Now I am unable to get an MRI do to the fact that the SCS is surgically implanted. Its been many years and I’m at the end of my rope. The good thing is I have saved all my medical records and films and finnaly found a Doctor who asked me if I was given steroids for the last 8 years I was able to show him at least 30 injections and Medrol dose packs. I wish I new then what I do now. However since feb 17 2011 I was rushed into ER for bi lateral pulmonary emboli and spent 14 days in the hospital in a category 1 status. Needless to say the dr who found the reason has informed me that in fact I do need a total hip replacement and the only reason it hasn’t gotten worse quicker is I use crutches and favor that side for so many years well its gotten so bad now Im feeling the same pain on my right side do to the fact I favor it. I guess what I was hoping to find out since I was unable to use the left leg for so many years and not knowing about the AVN until this new Dr found out why is the a correlation between the two? I also now have had serious DVTs as well and was told by my family dr its life or limb. Not what I wanted to hear. I just don’t know what to do anymore one dr says this the other says that. O may I ad this is a work comp issue. Crushed by a propane tank and had C-5 C-6 fusion as well that did not take and ended up having to go through a second complete fusion there as well. I just want to walk normal and have not been able to for years. Not to mention 4 blood transfusion’s due to the Coumadin I am taking it seems no one knows what to do. After being in the Hospital a minimum of eight times now I am terrified to even go in again but know it needs to be done. I guess my only reason for writing this is I feel alone and at times just want to end it myself. I have been fighting for so long it seems as this will never end. Now I do have a Lawyer but I feel like the old saying is true DELAY,DENY, TILL YOU DIE. Well I will say I am going to fight this to the bitter end. in hopes someone can help me. Sorry for the long story just needed to tell someone who has AVN and may know what I am going through, To thid day I still use crutches and my electric wheelchair at the age of 48. Before all this started I was very athletic with my five children and now I feel like a cripple. I know god has a plan and I will fight. Thanks for allowing me to vent. I pray for all of you that your pain goes away and back to what your used to doing. Someday I hope to be as well. my apologies for the novel. RTB
Ronald,
Thank you for sharing your story. You are not alone. There are lots of people out there who understand what you are going through and the pain you are having to live with. Please click on the links to the Avascular Necrosis support groups, you will find many people willing to talk on there.
How were you first diagnosed withe AVN? Why are you on Coumadin?
I understand what it feels like to not want to live anymore. I felt the same way for a while, but there is always hope. If you really feel desperate please tell your family and friends, lean on them for love and support. Don’t fell alone in your pain.
I didn’t think I was ever going to get better, but I did. It doesn’t feel like it now, but having AVN will make you a stronger person and more appreciative of what so many take for granted.
Cassandra
I have been diagnosed with AVN in my hips. After showing to three orthopaedics by whom i was suggested get CD preformed I have made my mind on this surgery but i have read a lot on-line about CD not solving the problem and most people do need THR. Also when asked the reason why i have AVN they told me that it idiopathic which i dont buy cause there is a reason for everything. I have taken blood test which where recommended by my sister in law who is a doctor just to try figure out the reason. I do have knee pain for a while but due to low Vitiminn D levels my doctor always told me that was the reason for the pain. Now i am not sure what is the real reason is because my MRI was only done on my hips and nothing has been done for my knees. Also i have read on this site about using stem cell with CD which till now i have not heard about but if this is effective i much rather try that as my AVN is only in stage 2 which i believe is the only plus point for me. VERY interested to know about where i can get this surgery done with the stem cell option.
regards,
Imran Qureshi
Hi Imran, it would help if you could tell us which part of the world you’re in. I live in India (Bangalore) and am due for my first stem cell injection on October the 2nd. This procedure has shown great results and involves injecting your own stem cells into the affected joint without the need for core decompression.Dr. Nagaraj does this procedure and has his own protocol that is different from any other that I’ve come across.
At this point, core decompression seems like a very outdated procedure and it’s sad to see most doctors still recommending it despite there being no real evidence of the surgery working.
I can give you the details if you email me on chhavi264@gmail.com. I have AVN in both hips as well as both knees with numerous lesions. But I’m very hopeful about this procedure. I had the bone marrow extraction last week and it was a very simple procedure with very little pain (as compared to the usual pain we have) afterwards. Feel free to contact me. Hope i can help you in some way.
Hugs…
Dear Imran
I am Saleem live in Karachi ,I have the same problem which you had AVN I am on alternate medicine . I want to know about your
experience of Banglore, stem cell therapy. pl reply immediately.my email saleem.n@live.com
Dear Imran,
Please e-mail me your contact details. I need your guidance and feedback on stem cell therapy. Your help will be highly appreciated. I have read about your success story on many websites. My e-mail id is blackberry4k@gmail.com
Best Regards,
Ahmed
Dear Imran, I have read your success story at many news papers website when i searched for AVN and stem cell therapy. I would like to get in touch with you to know your real experience. could you please share your e-mail or contact no.
Your help is highly appriciated
Thanks
Ahmed
Dear Imran,
I am from india and i live in middle east. Please drop an email at blackberry4k@gmail.com. Need your advise and feedback for treatment that you went trought.
Thanks & Best Regards,
Ahmed
Dear Imran, Please provide me your e-mail address. Need to get feedback on your experience with Stem Cell Therapy. Appriciate your Help.
Thanks
Ahmed
Dear Imran,
Please e-mail me your contact details. I need your guidance and feedback on stem cell therapy. Your help will be highly appreciated. I have read about your success story on many websites. My e-mail id is blackberry4k@gmail.com
Best Regards,
Ahmed
I have AVN in both lower legs and sent an email to Dr. Glueck about a week ago but have not heard back from him. Does he usually respond quickly to emails or do you have any suggestions as to how I should proceed. My pain is severe and the orthopedic doctors that I have seen say that my condition is due to poor blood circulation but have done no blood tests and advise me to have my ankles fused or wear braces for the rest of my life. I’m 25 years old.
I hope you hear from the doctor you are trying to contact soon… The doctor I am seeing said that there is basically nothing that they can do for my knees at this point. I am in sooo much pain as well. It’s hindering my job performance big time. We are too young for this. They say everything happens for a reason… but I am struggling to see the reason for dead bones! Besides the fact that the doctors I have seen for an unrelated condition have given me more problems trying to treat something else…. Ugh! It’s so frustrating.
I have just been trying to make the best of it and have been telling all my friends that the Zombie Apocalypse has begun! That I am officially a walking dead now… lol
Hello everyone. I am glad to have found a discussion group on AVN. So… Here is my story. I was diagnosed with AVN in both knees about a month ago. I am 32 years old. My orthopedic Dr. told me it was caused by steroids. Not growth steroids… I’m a rather thin guy. lol. It actually all started back in 1998 when I had terrible pains in my stomach. To make a long story short, I was diagnosed with Crohn’s disease at age 18. At first, they thought my appendix was rupturing and rushed me into surgery for that, only to find out the real cause of the pains once they opened me up. The first thing they did was put me on huge dosages of steroids in order to control the inflammation going on in my intestine. About a week later, I was in surgery again and they chopped out about 3 feet of my intestine. I have dealt with that disease almost half my life now. There were times of flair ups when they would put me back on then off of Prednisone. I was also on Remicaide treatments for about five years.
Now, going back to the AVN… I started noticing pains in my right knee about three months ago. It would hurt, then stop, then hurt, then stop… i figured it was just a sprain or something and would heal. Well, it kept getting worse and worse so I went to an ortho to have it looked at. I have actually seen two ortho’s for it. The first guy ordered an MRI and said it looked like something was wrong with it, but said he really wasn’t sure what to do about it. I don’t think he had much experience with this type of issue. So I went to another for a second opinion and the second ortho knew right off the bat what was wrong. He did another set of X-rays and I brought my MRI to him to look at it. That’s when I found out what avascular necrosis is. He showed me the X-rays of my knees, both of them looking the same. They looked like cracked glass! Then he told me the MRI of my right knee showed clear cut signs of two spots in my bone that were completely dead.. He did say that it was in some early stages of the disease but didn’t elaborate on what stage. I noticed someones reply referring to 5 stages of the disease and would like more info on those stages. The only thing the doctor has done so far is to give me a six week prescription for Fosamax and told me after I use all those doses, to go see him again…. Other than that, I really do not know what to expect from this disease. Dead bones! It all sounds so scary and confusing. I have already been through so much with my Crohn’s disease and this is NOT what I wanted to hear at age 32!!! Any and all advice or information would be greatly appreciated.
Thank you to the moderator of this website for giving me a place to vent and seek out more information. Bless you all!
Hello Everyone!
Please help, I was just diagnosed of Osteonecrosis of navicular bone in my right foot yesterday, on Christmas eve. 😦
THe doctor advised me to undergo core compression. I do not know what to do. I am so confused why this has happened. My questions are, how did i get this? I am not a drinker, I dont take steroids.
I had a 5th metatarsal fracture back in 2011 in the same foot which was already fixed but other than that there was no recent trauma. The pain developed gradually. I used to play basketball but for more than one month now, I am not able to do that any longer due to pain.
WIll the core compression really helps? will I be able to play again? will I be able to run again?
What are my options?
Please help.
Louie,
Sorry to hear about your AVN. I felt the same way you feel when i found out that I had AVN of the hip. There isnt much info on AVN of the foot so really not sure on how CD would work for that. As you may already know that AVN effects the joints so I am wondering which joint is effected?
later,
Imran
Hi Imran,
thanks for your reply. it is my navicular bone in the right foot that is affected.
if CD (I assume CD means core decompression) will not help then what does? I read in previous post here that stem cell injection will work. isnt that expensive? and where can I get that here in KSA or even in Philippines?
regards,
louie
Where in ksa are you? Stem cells is a good option and is expensive. And I am sure its not available in ksa. You will have to do your research to see if its available in Philippines. As I also had stem cells treatment done but I had it done form india. I highly suggest that you do as much research as possible for yourself as you wont be able to find many people that can help answer your questions on avn.
i used ciaro therapy just like acupressure therapy. this therapy is very useful for AVN. today i am 90% relief without operation. i continue work in computer 8-10 hours in a day.
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Thank you all for sharing your stories and information. I am 32 years old and have had 5 major spinal surgeries in the last 5 years and my be headed for my 6th. Unfortunately for me that has meant anywhere from 4-6 months of sitting/laying and suffering waiting for surgery followed by 3 months of only being allowed to lie down during recovery for each surgery so my hips have taken a beating just from being laid on so much. My mom has AVN and has had both hips replaced before age 60. I am getting concerned because I’m at a point now where I’ve re-injured my back and while that means due to sciatica I suffer from unrelenting pain down my left leg, my left hip and femur area is becoming unbearable. I have groin pain, pain in my buttocks from my piriformis muscle clamping on my nerves, a general ache in my thigh, calf, and foot, and of course an unstoppable hip pain. I can’t lay on my left side. I can’t lay flat on my back with my legs straight, my left leg is always bent with my foot touching my right knee. I’m constantly stretching my left hip. I’ve always thought it was just my back but I’m beginning to believe I have quite an arthritis problem with my left hip joint itself and possibly AVN. Similar symptoms are emerging with my right hip now too since I’m laying on that so often. I don’t think I could handle one or two hip replacements after all of the spinal work I’ve had done. I’m on plenty of medications for a recent back injury and they’re not putting a dent in my pain. Any recommendations would be helpful.
Matt
We have a webpage http://www.osteonecrosisawareness.com and facebook- https://www.facebook.com/groups/OuchAwareness/
WE are raising awareness for better treatment and public support. Lets all join forces and tell the world about this disease. It will take us all, but it CAN HAPPEN if we WORK TOGETHER. I have ON in 9 locations and live in a wheelchair-but I will STAND UP for those with this disease until my last breath.
i used ciaro therapy just like acupressure therapy. this therapy is very useful for AVN. today i am 90% relief without operation. i continue work in computer 8-10 hours in a day.
Hey y’all! This is a long shot since the last post was over a year ago, but it’s worth a try. I’m about to be 26, and have been diagnosed with avn/osternarcrosis in both knees, both shoulders and possibly hips. I had my first surgery done 6 weeks ago on my right knee. My surgeon broke my femur, and scraped out the dead bone from my femur, down into my knee, replaces it with bone graph/cadaver, screwed my femur back together and sewed me up. They pain has gone down but it is still very much there.. though I am only 6 weeks post op, so that’s still understandable. Within the last 6 weeks, my other knee, both (more so my right) shoulders and my hips are excruciatingly painful. Before I get the same procedure done all over, I’m wondering if anyone else has had this same surgery and any success rates? I’m so tired of hurting and I know some of the pain is compensation pains, due to still healing and being in crutches, but I can feel the lack of blood flow and the exact symptoms that my first knee had for so long. I have horses, motorcycle, work as a vet tech, and I’ve been unable to do any of these things for months. If I need it done ill get it, but just curious also if there are any other suggestions. Also, any suggestions for pain.. i have oxycodon as needed from the surgery, but im very hesitant to take it every time im in pain, because lately, thats been all day ecery day. Thanks in advanced, Maura Teehan – Florida. Mlteehan@gmail.com
I was just diagnosed today with AVN in the right shoulder….ALL new to me. I’ve been in pain with that shoulder for at least three years. It is getting harder and harder to move any part of the arm/shoulder. I think I have stage 3/4…Will find out Friday when I see the doc. Pls try and give me a heads-up for what to expect in the near future. As I said….it’s all new and I am trying to learn about this. Thank you in advance. I am located in Florida on the east coast. I am a 58 yr old female with insulin dependent diabetes and other medical problems….Not alcoholic…have taken a few cortisone shots for my feet, two/three prednisone episodes….I know this is not life threatening, but I am a little concerned about the future. I believe in finding out what are ALL my options and then deciding from there,,,,Thanks to all for listening – God bless. Patty
Dear Imran,
Please e-mail me your contact details. I need your guidance and feedback on stem cell therapy. Your help will be highly appreciated. I have read about your success story on many websites.
Best Regards,
Ahmed
HI my name is deanne Ive been walking on collapse in femur head for eleven months very painful no support. I have been judged badly and accused of not being sick this is hard losing ability to walk very frustrated while people take my job life and boyfriend because I’m crippling I have a good doctor but living is hard and medical support would be better if I had cancer