Your Story

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.

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474 thoughts on “Your Story

  1. Anotheperson who does it, used to work with Dr. Mont when Dr. Mont, who is now at Cleveland Clinc, was at Lifebridge Health, is Dr. Bradley Lamm. Mont and his colleagues did the hips and knees and Dr. Lamm did the ankles. I asked him what he could do for mine and he said to send him my films.

    He called me back after he’d seen my films and said that what he’d propose for my osteonecrosis was to do a CD, but in the cores he’d put bone growth hormone, bone morphongenic protein (maybe their the same) and then bone cement, I think. He would need to put the cement in the cores for stability of the bone.

    He’d also do some joint distraction. His name is Dr. Bradley Lamm, he’s in the Baltimore area.

    Annie

  2. Hello. I want to tell my story for everybody. I am 41 years old. I was diagnosed with AVN of the right hip 4 years ago. I was at stage 4, in need of a hip replacement at a young age. I met a wonderful doctor in St. Louis who decided to take a chance on an experimental procedure. I received a core decompression with stem cells in July of 2014. In October of 2014, I received a PRP treatment. I began physical therapy on my own, and began an intense nutrition and supplement diet. In July of 2015, I once again had the core decompression and stem cell procedure. I continue the supplements and daily exercise program. Today, 10/3/16, I still have not had to get a THR. I encourage anybody with this terrible disease to write me at wildbillsboxing@gmail.com I would be glad to discuss my ongoing management of this horrendous disease. God bless each and every one of you.

  3. Good for you. I remember when I first was told that I had necrosis of my right hip and was told nothing could be done short of a hip replacement. I was especially taken aback when the doc said they didn’t know the cause…”it just happens”.

    Limping around in pain with a cane was really scary. I ended up fixing the problem myself (that was 15 years ago), and it has not returned (thank goodness). My fix involved use of high frequency mechanical stimulation of the affected area. My take was that it broke up whatever was clogging the capillary blood flow into/out of the joint, thereby allowing the joint to fully recover.

  4. I haven’t AV in my right hip and left hip, I”ve made up my mind I’m having a hip replacement. Studies show that within six months it starts to slip again. I go to the VA and they did nothing for 6 months. I’m not having the decompression because I have osteoporosis, so drilling whole in my femoral head I believe it’s going to fracture. Can I sue the doctors for not telling me I had avascalar necrosis and they knew and didn’t tell me. They gave me a misdiagnoses they said it was my spine after I left to go the doctor can and said he found the disc and I have AVN. Then I went back for a follow up appointment I was told tha it was bilateral. Now the both have to be done, as I said no decompression for me because I’m afraid of the fact that I have osteoporosis what recourse do I have please help Spenser Brown.

  5. Hi! New here. Looking to see if there’s anyone here from or near MT?? I had a THR due to advanced AVN 2 years ago and both my shoulders are now dropping cartilage, One OS told me it was “likely AVN” and then should expect a shoulder replacement in the next ten years (I’m quite sure it will be sooner just due to the pain) and after a phone call between my gen doc and the director of this orthopedic clinic, I was told I don’t have AVN, it’s just a typical shoulder (both?!!) impingement and I won’t need surgery. I also have pain at rest in both and my elbow is hurting at rest as well. I don’t feel right about this and I’m concerned I have multifocal.. My risk factors are fairy obvious; I’m a recovering alcoholic and was out on steroids for several weeks after my last liver failure (2011). I’m sober now and have a 3 year old daughter and teach ballet and Pilates. My gut is telling me to find an expert and hopefully seek some stem cell or BMP(?) treatment. I onlyhave Medicaid. But it’s paid for all of my MRI’s and my hip replacement so fingers crossed. Does anyone know where I should start? Do I request an appointment at Mayo? Hospital for special surgery? Which one? With who? Thanks in advance for any feedback!

  6. If the Rheumtaologist has said that the bone really is dead and there is no bone marrow left in the necrotic lesion even if i do find out the underlying blood disorder cause then is it still not treatable with medicine?

  7. Hey, im 22 yrs old and im suffering from AVN from 3 years and it is stage 4, im on medicines like alendronate sodium and calcium tablets. My orthopaedic surgeon doesnt recommend surgery at this little age. And even i dont want any surgery, i want to know that with having this problem, pregnancy is possible?, bcz it is an age of marriage and childs. Please help me by replying. Thank you so much

  8. I was diagnosed with Avascular necrosis of the left hip at the age of 17. In 2011 if I’m remembering correctly. I remember when my symptoms started because the very first time I felt any type of pain was when it fractured. I stood up on the school bus to go into the school and I felt a pop and was instantly in excruciating pain. I sat back down and waited until the pain subsided enough for me to stand up and I limped all day in excruciating pain to the point of tears. I had never pulled a muscle so I assumed I had just pulled my thigh or groin muscle and tried my best to push it aside. The pain subsided over night or after long periods of rest but if I sat or rested for a bit then stood back up the pain would be excruciating. The pain came back every few days and it got to the point where I’d have to sit on my bed at night with a heating pad and beg my mom to help me. The pain was mostly in the groin area and I was sure I was just re hurting my pulled muscle or ligament. After many ER visits my mother and father were growing tired of hearing it was probably just a hurt muscle. Even X-rays weren’t showing anything. My father thought I was making the pain up for attention but my mother believed me. She was the only one. Finally after a 5th or 6th ER visit I was referred to a bone specialist. I didn’t think anything would be found because everybody had already done X-rays so what more could a bone dr do? The doctor left the room and I had more X-rays done. I sat in the patient room for awhile joking with my mom and was shocked when the doctor told us we had an appointment with the hospital for an mri. My mother knew something was up because she was a a registered nurse who happened to work at the same hospital. So she asked the dr why I needed an MRI and he quickly replied that he’d rather be 100% sure before making a diagnosis. My mother was mad and at this point I’m realizing something must have shown up. A million things were running through my head. My mother waited until he left and then she stuck her head out of the door and listened as the bone dr spoke into a recorder. She quickly came back and we gathered out stuff and left. In about 3 minutes we were parked outside the hospital and she was going up to the floor she worked on. After waiting for about 10 minutes she got back in the car and we drove home. I was exhausted and my leg had an awful deep ache in the groin so I laid down for a nap. I was woken up by my younger sisters. Mind you, they were 13 and 13 at the time. Hardly awake, I was drilled with question after question,” why is your bone dieing?””I’m sorry your hip is dead.” I was bombarded and confused. What? I slid out of bed and followed them to a medicine dictionary they had pulled out my mother had written notes about AVN. She had the definition highlighted and I’ll never forget crawling into my sleeping mothers arms and balling like a baby. I cried and asked my mom she just held me until I fell asleep. After the MRI I found myself back in that same bone doctor’s patient room. Only this time I was scared. And 15 minutes after arriving at the doctors office I was officially diagnosed with Avascular Necrosis of the left hip. Apparently once it to a bad enough point it will finally show up on an X-ray but much like a stress fracture it won’t show up early. The first surgery we tried was bone decompression. The surgery left me in more pain and wheelchair ridden. And in my senior year of high school I was a laughing stock. The surgery failed to have any good results and the next surgery was done to take out the hardware that had been placed in my leg and it wasn’t until 3 years after my initial diagnosis that I finally received my total hip replacement. After 3 drug induced depressed years I’ve finally got my life back. I was also diagnosed with a gene mutation that caused a blood clot which cut off the blood supply to my hip causing the bone to die. I’m now 23 and still pain free one of my legs is very slightly longer than the other and occasionally I get knee pains from walking weird for years.

  9. Dr Gleuk no longer practices. I was referred to Dr. Naila Goldenbueg of Mason Ohio who worked closely with him. She has done the whole lab work up with me. She is very knowledgeable in this area. Highly recommend her if you are in the Southwest Ohio region. Still a few labs pending, plus I still need to have my E-nos blood work drawn. Hoping to find answers for my AVN (left knee). On another note, I have had a terrible time finding an orthopedic surgeon who is experienced with osteonecrosis (a handful of surgeries doesn’t count). I am in need of my third surgery now and the one surgeon in Cincinnati who specialized in this has also retired. If anyone has any recommendations I would greatly appreciate it. Preferably a surgeon in Cincinnati or Cleveland area. I would consider NC (Duke) or NY but would really like to not have to travel that far. Thanks.

  10. Just want to shout out to the organizer of this website and to everyone for posting. All other searches have come up empty handed for me. I have found so many helpful leads on this website. A patient of Dr. Michael Mont posted that he (Dr Mont) had recently moved to Cleveland. That’s only three hours from me and I looked him up and he sounds like a great fit for a surgeon who knows AVN in depth. He is the new chair of orthopedic surgery at Cleveland clinic. Will share feedback after my first appointment with him in late February.

  11. I was diagnosed with AVN in my right femur – the ball near the knee in July. I was put on crutches- 0 weight for 3 months. after 1 day the excruciating pain was gone. The orthopoedist thought it was going so well that I tried walking 1 month later. That was horrible. Within 24 hours I was back on crutches. Basically I spent 4 months on crutches. The first MRI lit up the femur , bottom ball area in the knee, 2nd MRI showed very little and the Dr thought maybe it wasn’t even AVN, but microfractures, but the 3rd MRI was back to being terrible. Then he saw a few areas on my tibia that concerned him so he sent me to a hematologist, thinking it was cancer (Multiple Myoloma). The Hematologist looked at all 3 MRIs, saw that there was 1 dot on the tibia in a different location in the 2nd MRI, and then these 2 new ones on the 3rd MRI. He was confident of no cancer, but I did the battery of tests to be sure. Let me back up too. 13 years ago I was diagnosed with hyperparathyroidism. That leaches calcium from my bones and I have had osteopenia and been on fosimax for a few years and that stopped the decline of bone mass loss. I had mentioned this to the orthopoedist. So I talked to my endocrynologist and he referred me to the best endocrynologists in NYC (I live close by) – Dr Bilizekian (or anyone in his practice -in Columbia Pres). Well it took several calls from me, my endocrynologists and sending documentation to finally get an appointment 2 1/2 months out. So I decided that I would try things slowly, after 4 months on the crutches, and 5 + months with this dibilitating situation… I started walking slowly and carefully. First to the bathroom, then around the house. Stairs are hard. I am careful. I never walk far. I listen to my body. If it hurts I stay home the next day (I am lucky that I run my business from my home). So I have now been 2 months without crutches. Next week I see Dr Cusano (in Dr Bilizekian’s practice). I3 years ago I had a scan on my neck to try to find the parathyroid that was the problem but they couldnt find it . I just had another scan to bring to Dr Cusano to see if she can find the problem now and possibly remove the parathyroid. I am not sure why my bones are not healing but I am hoping that the endocrynologists can find it. I don’t know if i have AVN and it just won’t heal, or something else. Stay tuned. I was very active prior to this, hiking , biking, and I just started swimming. I had found a youtube video for yoga on the floor (non-weight bearing) that has been terrific. This is a long road but I am hopeful and appreciate even the small amount of walking I am doing, vs being on the crutches for so long. Anyone advice greatly appreciated…

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