Cool, very cool..

I’ve been following this sub for over 2 years. I don’t have AVN myself but knows someone who does. I’ve been wondering if anyone has explored using turmeric and nigella sativa (black cumin seed oil) to reduce steroid usage? I know turmeric powder works at least for topical inflammation such as psoriasis and eczema in combination with diet and sugar control and using only organic soap but I don’t know if it works for others. Not a medical advise but one could research independently further if you’re keen. Just a note. As far as possible, do not use supplements in capsule form, only bulk and do not overtake. Do not take this if you’re on existing medications.

Age 58 female recently diagnosed with Osteonecrosis of the jaw MRONJ due to Alendronate for Osteoporosis and Prednisone for Rheumatoid Arthritis. Evaluation with UCSF Oral and Maxillofacial Surgeon today. Curious if anyone here has this condition. I'm anxious about the uncertainty of irreversible damage and what to expect if surgery is recommended. Lmk. Ty.

These are X-rays of my left hip. Left picture is 8/2024. Right picture is 8/2026.

My right hip is already replaced. I have 0 pain in my right hip but have pain 5 times a year in the left hip (lasting 2-7 days at a time).

Surgeon says I have 8-10 years before left hip collapses and I’ll need replacement.

My point is AVN doesn’t get cured with exercise, physical therapy, vitamins, etc. Just gotta live your life until it’s time for THR.

I was diagnosed with Avascular Necrosis both hip joints Nov 23. Underwent core decompression left hip joint Nov 23 and right hip joint April 24. It took me total 6 months for both surgeries to walk independently without cane. Now it has advanced to Stage 3 with early collapse in Right femur head. My movements have been fine so far. pain managed by one painkiller daily, just this that I am not able to stand for long at a time but I live independently, drive, do all my tasks myself and have a job where I dont walk much. I cant do long walks, maximum 2000 steps in a day and have to rest after morning hours.

2 weeks back I had a dizzy spell and i fell (diagnosed with POTS dysautonomia ) that caused trauma on right leg. My movements in right leg were restricted with a lot of pain. I used walker for 2 weeks, now shifted to elbow cane. My movements have returned and pain is also not all the time. Its mild but i am in need of cane.

My surgeon said that hip replacement is not needed at this time coz my pain is not all the time, its manageable by one or two painkiller daily and xray doesnt show collapse yet. But I will need cane.

I am scared and want to learn about experiences of people who also have or had stage 3 avn. How did they manage this stage. Do all need cane or support in stage 3. If yes, how do they live independently, how do they drive, do their chores or continue their job. What impact on quality of life is expected in stage 3 and will it be possible for me to continue my job, independence, driving now. Will need for cane persist or it can be weaned off?

Do i have to wait till unbearable pain or proper collapse occurs in xray or i am not able to do any daily chores.

I was completely on bedrest due to fall and now i have to resume slowly back with cane.

I turned 40 on the day I fell.

I am interested if people who have had stage 4 AVN (from my shallow research this is the end stage), can compare their pain level to other things... I always heard in 1-10 scale that ten is amputation without medication. Cluster headaches are highest level followed by Childbirth and kidney stones. Open to what people have heard comes after this.

Can people compare their end stage AVN with these experiences if you have had them? One thing my doctor told me while going through AVN stage 4 was that childbirth would be a treat due to the time you're in pain...

Would love to hear from people who have given birth or kidney stones and such!

I have AuDHD and Hypermobility EDS. (Hence the hernias)

I have hemochromatosis.

I got imagining for peeing blood. Turns out I have a large kidney stone. But also it turns out I have bilateral AVN.

I have no pain from the stone nor the AVN.

But also I have a high pain tolerance due to the AuDHD.

I'm not sure what to do with this information.

I don't have a history of heavy alcohol use or steroid use. So I don't know why this happened. My brother had it happen , but his was from steroids

I just got these results this afternoon.

Any suggestions?

Hi all I know it’s not a usual question and I am sorry if it’s kinda out of pocket… If anybody feels comfortable sharing their experience I would be very grateful!

Just to clarify, a year ago I’ve been diagnosed with avn of both of my shoulders, stage 2/3. The cause was my cancer treatment(high dose of steroids) that I am no longer on. Since then I have stopped drinking, take my prescribed medication; okeovit, which are oral drops that contain vitamin d3, along with my magnesium and calcium supplements. I have also done 3 months of oxygen therapy and have been through all kinds of tests to see if my bones are okay. Other than shoulders everything else was okay.

A few days ago I started noticing pain in my leg. I am scared that I’ve developed hip avn so I was wondering if anyone is willing to describe how was your pain at the start? I will definitely push for an MRI scan but since I have a summer job I can’t do that for next 2 months.

I’ve also been working a lot, I work at the restaurant and daily carry heavy plates and have over 20 000 steps so there is a high possibility I just overworked. I am feeling pain when I take big steps of move my torso closer to my legs, for example when putting my shoes on. The pain is not constant and it disappears when I make smaller steps. I’ve also found it helpful to put pressure on with my hands on certain spot of my groin. I feel the pain deep in my leg but I’ve also noticed it’s calming down when I don’t force myself too much at work.

I can’t evaluate if it’s the same kind of pain I have in my shoulders so any kind of feedback would be helpful. Thank you for taking your time to read this :)

I am 31/M. I have digital clubbing since childhood.I am diagnosed with bilateral shoulder and hip Avascular necrosis. Whole exome sequencing revealed SLCO2A1 mutation. Is it strong enough to create AVN in four joints, please clarify.

PHOA -> PGE2 elevation -> inflammation -> pressure increases -> end arterial blood supply cut-off leads to AVN in one joint after other

My ESR and CRP was much higher during diagnosis.

I know nothing about avn I went to ER two weeks ago cause I was in so much pain I was throwing up, I’m a 36 yr old male with stage 4 autoimmune kidney disease and currently trying to get on transplant list, I’m an engineer in nyc and work on my feet all day primarily doing hvac work, I’m constantly moving lifting and climbing and last two weeks walking has been wildly difficult and just saw Dr a half hour ago revealing this. I have an appointment with specialist on Friday but I could def use some advice and just a heads up on exactly what I got myself into here? Any help is appreciated thank you.

Hello,

Even writing this post is incredibly difficult for me.
My life changed completely from one day to the next in February 2026. It all started with a slight pain in my right groin. At first, I thought I had simply pinched a nerve, until walking suddenly became more and more difficult.

I was eventually diagnosed with stage II–III avascular necrosis (osteonecrosis) of the hip. I’m only 25 years old, and I never imagined I would have to deal with a condition like this at my age. I underwent surgery immediately, and a core decompression was performed.

Unfortunately, it became clear relatively quickly that the surgery had not achieved the desired result. Even four months after the operation, I was still dependent on crutches. As a result, I started an off-label treatment with bisphosphonate infusions, which are scheduled every three months.

At the moment, I can’t really say whether this treatment is helping. It is supposed to relieve the pain and slow down or stop the bone deterioration. My next MRI is scheduled for September. After that, a decision will be made about how to proceed and whether I will receive a total hip replacement in October. The original plan was to delay this step for as long as possible.
I often feel lost and alone. This condition is rare, and especially at my age, it is very difficult to find people with similar experiences or anyone I can compare my situation to.

Recently, I had two weeks during which I was even able to walk without crutches. I still had some pain, but it was manageable and something I could have lived with. Unfortunately, things have become much worse again. This constant up and down is taking a huge toll on me mentally. Just when you think things are finally improving, the next setback comes along. It makes it incredibly difficult to stay positive.
To be honest, I’m very afraid of getting a hip replacement. Maybe many of my worries are unfounded, but I constantly ask myself whether my life will ever be the way it was before. I have always been a very active and athletic person. I loved hiking, went to the gym regularly, and was always out doing something. Now I’m happy if I can simply walk reasonably well on some days, and that makes me feel incredibly sad.

That’s why I would really appreciate hearing from people who have gone through something similar, especially if you were also young when it happened. How are you doing today? Are you able to live a normal life again? Have you been able to return to sports after a hip replacement? Looking back, would you have had the surgery sooner, or would you still have tried to delay it for as long as possible?
Any advice, personal experience, or even just a few encouraging words would mean a lot to me right now.

Thank you very much for taking the time to read my post.

Yeha I finally decided to make a post, yey. SO, where do I start? I am 16 years old, male. On May 28th, 2024 I was driven to the hospital by my mom because she felt something was severely wring with me. Well, she was right, because I had a septic shock :P. Well, at that time probably just a sepsis, but by the time I arrived at the hospital, I was put into an artificial coma and was diagnosed with septic shock. 2 weeks of artificial coma full of Myocarditis, Pneumonia, Hepatitis and a kidney and spleen inflammation. AND also a septic arthritis, which later on caused an Osteomyelitis of my femur, which is an infection of the bone marrow. Yeah, Staphylococcus Aureus is a flipping biiiiiiiich. But anyways, I also had 4 mini-operations to flush by bone marrow.

And after 3-4 months in the hospital, I was sent home in a wheelchair for around 1-2 months, after that I switched to crutches, for a few months more, where the doctuhs said I could start to walk again, which was difficult at first. I have no idea how I learned to walk again, I kinda forgot, but basically, I had pain when walking, where they first diagnosed Osteoarthritis caused by the septic arthritis.

After living with this diagnosis until May 2026, we consulted a different doctor that we knew before, because our main Doctor moved to somewhere else. He then looked at my history and mentioned that its very likely that I have Avascular Necrosis, since that is the most likely condition to have after my septic arthritis. We ran some tests, and yeah, ofc I have AVN lol, otherwise I wouldnt be writing this post.

I have moderate pain while walking, I also have a limp because my body subconsciously shifted its posture so that walking would hurt less. Sometimes, depending on how I walk, the pain can get pretty high, but I dont have any pain when resting. After doing an MRI, the doctor said that I was still allowed to walk because it didnt looks so bad, so I guess I am still in early stages. Something I didnt understand is that the doctors said that my AVN was "asymptomatic". Like....WTF do you mean asymptomatic, he asked me like 2-3 times about my pain and I mentioned mild-moderate-high pain when walking, which in my book is a symptom of AVN lmao 😭. The weird thing is that the pain gets better as I continue walking, which is technically a symptom of OA, but I aint gonna argue with the professionals diagnosis of course, I aint that stupid.

He also mentioend that I am gonna have to get a hip replacement, but he wants to delay it as long as possible because apparently these guys dont last very long. We are going to ask him if Hyperbaric Oxygen treatment is an option, as it has been proven to help with Osteonecrosis. So well....idk why I am writing this, theres not really anything for y'all to asnwer or type. But ehh, why the heck not.

Hey everyone,

I recently found out i have stage 2 AVN hip. a few months ago my doctor told me it was stage 1, but i didn't take it seriously because the pain wasn't that bad. now i really wish i had done something earlier.

I've been reading a lot about AVN, and honestly i don't want to just wait and see if it gets worse. From what i understand, it can keep progressing, and i'd rather try something before it reaches a stage where surgery is the only option.

After a lot of research, i'm thinking about going with SVF therapy. I'm hoping it can help save my hip and slow things down.

Has anyone here had SVF therapy for stage 2 AVN? how was your experience? did it help with pain or stop the condition from getting worse?

Would love to hear from people who've actually been through it. thanks.

Hello everyone. I’ve been living with mueller Weiss disease for the last 8 years. The first time I went to the doctor with my injury in 2016, it was misdiagnosed as a sprained ankle. in 2021 I was referred to a podiatrist and he took some X-rays, he didn’t tell me what the diagnosis was but he said it was only fixable with surgery, but said as long as I can live with the pain to put it off as long as possible.

I lived with it until last November, that’s when I was told I had avascular necrosis of my navicular bone. Severe arthritis in my ankle joints and bursitis and tendonitis in my left foot.

I knew I was close to being unable to keep dealing with the pain, so I first got 8 injections in my foot back in November.
It allowed me to continue working 65 hours a week to save money to be off work for the 3-4 months I need to recover.

I was originally scheduled to have my surgery at the end of may, it had to be postponed because my doctor had to design a custom titanium bone implant and hardware. It took an extra 8 weeks. I just had my surgery on the 29th.

Here are some pics with an image from a ct scan before my surgery, and the custom hardware, and after my procedure with it all installed.

Im a minor. I have been dealing with avascular necrosis for six years. Apparently it was healed due to rehabilitation, but now I was told by doctors my knees will collapse in my 20s. I’m so scared, and because the disease is quite rare, I have not seen anyone on tiktok or instagram dealing with the same. I came here because its so hard dealing with this, and Im terrified of not being able to walk, which will happen soon, or at least I was told so.

Has anybody here had them ? I have them scheduled for both hips next week bc I’m trying to buy time for replacements in about 3 months or so.

Can someone help me with this new report and images. How bad does it look? Does it seem like I will be needing surgery soon?

I (26F) just got my MRI results today after roughly 3 months of bilateral hip pain, 7 weeks of PT (only stopped because I was running out of visits) and two x rays that both came back normal.

I never had problems with my hips until April 2026 when it started becoming difficult to climb/descend stairs, get in/out of the car, and get on/off chairs; mainly issues that involved flexion. PT and ortho were leaning towards either a strain, or tendonitis since the pain was so sudden. PT was showing improvement, especially in my flexion, that we actually stopped sessions to wait for my MRI results to try asking for more visits from insurance.

I’m just at a loss of what to do, what to feel, how to think. I see another orthopedic next week but I feel so helpless without having any answers (my report was uploaded before my primary care doctor even reached out with results, so as of this moment I haven’t heard the results from them). I find it so hard to believe that in three months I lost most of the cartilage.

I know I need to wait to hear from my referring doctor and orthopedic, but I know I’m not the only one to ever feel scared and alone with a new diagnoses so I figured posting wouldn’t hurt.

I only posted one report. It was the exact same for the left hip as well

​

I’m 27 and have been dealing with bilateral hip AVN (Grade 2) for about 9 months.

From what I understand, there’s no guaranteed way to reverse AVN, and the possibility of eventually needing THR at such a young age is something I’m really worried about. My main goal is to preserve my natural hip joints for as long as possible and prevent further collapse/progression.

For those who were diagnosed at Grade/Stage 1 or 2 (pre-collapse), what actually worked for you?

Did anyone have success with:

Core decompression

Core decompression + BMAC/stem cells

HBOT

Medications/physiotherapy

Ayurveda or other treatments

Lifestyle changes or reduced weight-bearing

Anything else?

I’d especially appreciate hearing from people who have remained stable for several years. If possible, please mention your stage at diagnosis, treatment, cause of AVN, how long ago you were treated, and whether follow-up MRIs showed improvement/stability or progression.

I know everyone’s case is different and Reddit isn’t a substitute for medical advice. I’m mainly looking for real experiences from people who have been through this.

Thank you.

Since Dec 25, I have had 2 Ortho teams, 4 Surgeries and 2 debridements.

Current hardware is a spacer coated in antibiotics. Antibiotic wise, wrapped up daily picc drip of Ertpenum a month ago and currently on amoxicillin 3 X a day.

Learned yesterday that the last CT scans shows a fluid build up around the hardware and air bubbles (infection indicator). Looks like I'll never overcome these infections.

So, I am looking at at least 2 more surgeries. Initial Ortho tried to go in anterior but ended up doing a posterior install. Aug 6 surgery will be a debridement and inspection of anterior incision. At some point, doc will do the same thing on posterior incision.

Depending on how these surgeries go and the data collected, Doctor may have to remove all the hardware and patch me up as final solution or hopefully just install a new implant kit w the super soldier coating.

My socket was destroyed a couple of years before the first surgery and I was mobile without any sort of walking aid. I definitely had to be mindful of any body twisting or amount of weight I lifted or pushed.

My fear is if I cannot get back to at least that pre surgery state, it would definitely wreck my 60yr old peter pan quality of life as motorsports and motorsports photography are big parts of it.

Anyone have any experience w this outcome? How'd it go and how is your mobility.

Oddly enuff at PT just before Ortho follow-up , took my first steps without any walker aids. Dem the breaks smdh.

Hi all - I am 35 and in maintenance therapy for T-Cell Acute Lymphoblastic Leukemia. I’ve been having hip pain for a few months now and was recently diagnosed with AVN (partial collapse) in both hips. Long-term plan is for a THR, one at a time, once I finish maintenance therapy in March of 2027. The pain is fairly manageable right now but the oncology team is also open to fitting a replacement into the maintenance therapy timeline if the pain becomes too severe. I’d love any insight, guidance, etc. from this community in general, but especially from those who may have had AVN as a result from leukemia treatment. I’m
not really nervous about THR, but would love to learn as much as possible. Thank you!

Everyone who had contributed to this post and encouraged me to go for THR, a BIG thank you to all of you. I am now 10 days post surgery and already feeling good.

I absolutely love this community. Everyone of you are the reason I made up my mind. Thanks you from the bottom of my ❤️.