Avascular Necrosis

Join the Conversation on
Avascular Necrosis
514 people
0 stories
29 posts
  • About Avascular Necrosis
  • Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
    Don’t miss what’s new on The Mighty. We have over 20 email newsletters to choose from, from mental health to chronic illness.
    Browse and Subscribe
    What's New in Avascular Necrosis
    Community Voices

    has anyone taken blood thinners, speciafically lovonox for avascular necrosis or osteonecrosis? what was your experience any positive results?

    I’ve been taking a full therapeutic dose by injection everyday for 7 months and do not feel it has made any difference but do not know how long to keep trying since my hemotologist said it’s up to me how long. the studies have been done for 30 -90 days until more recent studies have gone 3-6 months. it is supposed to stop the progression of the avn if it is in stages 1 or 2 and maybe help with symptoms of more advanced stages of disease but also depends on the underlying cause of the avn. if you have any experience with this I would love to hear about it.
    #Osteonecrosis #AvascularNecrosis #AVN

    Community Voices

    starting avn dialogue

    I’m not new to avn I’ve been diagnosed since 2009 and I have so many questions about it still and many experiences to share as well I’d love to start some dialogue about #AvascularNecrosis
    I have experience with the shoulder hips knees and ankles. I’ve had 7 joint replacements 4 of them during the pandemic and 2 decompression surgeries. I’ve had unusual complications after 4 of them including 2 blood transfusions and I’m wondering if others have had the need for blood transfusions after joint replacements due to avn.
    I’m new to hand/wrist and. elbow avn and would like to know more about others with the upper extremity avn.
    I look forward to hearing from others with #AvascularNecrosis and I have many more questions. #

    1 person is talking about this

    Changing the Narrative for Others Living With Sickle Cell Disease

    In April 2020, I lay in a hospital bed in Atlanta, Georgia, while fighting for my life. Unlike many other patients in the hospital, I wasn’t struggling with the terrifying and then-mysterious COVID-19 virus — my terror was much more familiar. I’ve lived with sickle cell disease (SCD) for my entire life and have come to rely on life-saving blood transfusions when my symptoms become severe. But the pandemic caused a nationwide shortage of blood donations and doctors told me that there was no blood available to give me. I was blessed to eventually receive a transfusion, but this incident left me determined to do my part to make sure that other sickle cell warriors don’t experience the same problem in the future. In people with this rare genetic disorder, the red blood cells form in a sickle shape instead of round. As a result, they are not able to transport oxygen throughout the body efficiently. Those with sickle cell disease can develop a number of potentially life-threatening complications including anemia, severe pain crises, infections, strokes, and organ damage. The common perception is that SCD is only experienced by people of African descent, but the disease is also seen in Hispanic, Asian, Middle Eastern, Indian and Mediterranean populations. There are treatments available to address certain symptoms of sickle cell disease, but no medications have been approved to treat its genetic root cause. Aside from pain medication and IV fluids, blood transfusions are one of the only treatments that mitigate my vaso-occlusive crises. Since being diagnosed with sickle cell disease at 6 weeks old, I’ve lost count of the complications I’ve experienced due to the disease. My first vaso-occlusive crisis (when the blood flow to an area of the body is blocked by a buildup of sickle-shaped blood cells stuck in the blood vessels) occurred when I was 3 months old, and I had additional crises about four times per year throughout my childhood. They each caused me unimaginable pain. I have experienced liver failure resulting from gallstones, avascular necrosis, and transient ischemic attacks (TIAs), which are stroke-like attacks. One of the most difficult aspects of having sickle cell disease is making decisions regarding my health. With no “cure” available for the disease, every medication or treatment option comes with potentially serious risks. I began taking hydroxyurea, a chemotherapy drug that is frequently prescribed to people with SCD, when I was about 16 years old. However, the medication is known to have devastating effects on patients’ reproductive systems. Even blood transfusions have side effects. I have worked with my medical team to manage the excessive iron in my body because if left untreated, it can cause liver disease, heart problems, diabetes, and other potentially life-threatening conditions. Some people with SCD eventually undergo stem cell transplants, but these are incredibly risky and not guaranteed to be successful. I hope that sharing my story contributes to multiple conversations in the sickle cell disease and broader rare disease communities. I am one of the many sickle cell warriors that rely on blood transfusions for survival, and my goal is to remind those who are able to make donating blood part of their regular routines. When people hear about my experience, they often feel helpless and want to know if there is anything they can do. Becoming a blood donor is one of the best things anyone can do. I think it’s important for sickle cell warriors to make it known that we are not satisfied with the current treatment options available to us. We have to do our part to push research forward by sharing our experiences so others understand how serious SCD is. Clinical trials that are in progress give me hope that our community will soon have access to a safe and effective treatment that does not interrupt our daily lives. I am determined to see the day when our struggles are spoken about in the past tense.

    Community Voices

    Newly diagnosed with Avascular Necrosis

    I was just recently diagnosed with Avascular Necrosis. I’ve been having hip pain since end of November. The strongest pain meds I’ve been given is naproxen. I have been lucky in the sense that my PCP took me seriously from the start, did X-RAYS showing the Avascular Necrosis. Sent me to a Orthopedic Surgeon who let my husband go with me to appointments as I have had numerous traumatic surgeries. ( when on the phone making the appointment, I started crying because I am scared). He scheduled me for MRIs of both hips. Before that appointment I took a nosedive in front of my boys two younger, one older. Freaked them out, freaked myself out all while having to not because I had to Mommy and reassure them. When alone I called the orthopedic office and crying told them something was extra wrong with my left hip that something was happening and I didn’t know what to do. She moved my MRI up to less than a week and my follow up with the surgeon a couple days after that. In less than a month somehow the entire left bone was essentially gone.
    I never thought it could happen so fast.

    1 person is talking about this
    Megan McCleary

    Building a Life With Chronic Illness on the Other Side of Terminal

    Hi, my name is Megan McCleary and like any kid, I didn’t get away from childhood without some trauma. My dad was an alcoholic. I was raped, and then some before I was 18. I was diagnosed when I was 15 with hemophagocytic-lymphohistiocytosis in the summer of 2014. I was a newly minted sophomore in high school, on the marching band team. I played the flute. I was an honor student, at the time I thought I was going to be a nurse. That was the before. I was treated with high dose steroids, etoposide chemotherapy. I spent weeks in the ICU at Arkansas Children’s Hospital – doing physical therapy, getting treatment, learning to live again. My family watched me get sick, watched me sit at death’s door waiting for him to take me to heaven. And then, I survived. Since HLH, I’ve since been diagnosed with lupus (SLE), POTS, tachycardia, avascular necrosis, early on-set osteoporosis, asthma, major depressive disorder, severe anxiety disorder, PTSD, and obsessive-compulsive disorder. I’m constantly sick with urinary tract infections, ear infections, chronic rashes, butterfly rashes, strep-throat, bronchitis and so much more. I am in pain every single day of my life. I’ve had multiple surgeries such as having my knee and my hips replaced, having my bones decompressed for Pete’s sake. I take 17 pills at night, 12 in the morning and three mid-day. I pick up over $800 worth of medications. I have a wheelchair; I have a wheelchair handicap place card. I still need my wheelchair; I still can’t go a whole day without feeling pains everywhere in my body. This is the aftermath. I’m not telling you these things to feel sorry for me, I’m telling you these things because even though I’m a little fragile, even though I am a little scarred over, even though I have panic attacks and night terrors, even though I still baffle doctors, even though I can’t stand for long periods of time, even though I am hurting … I have peace. I have made peace with my chronic illness, but that doesn’t mean I have given up hope that there may a cure. That there will be a day I can walk without pain. That one day there will be a miracle treatment for me. That one day, I’ll be OK. I have hope still. It has been six years now since first being diagnosed. I’m a pharmacy technician. I’m going to college at the University of Arkansas. I’m a food science major with a concentration in Poultry Science. I want to be a QA facilitator. I want to be ready for tomorrow. Despite my shortcomings, I’m going to be OK. The past was hard, but that doesn’t mean there isn’t hope. My mom (my hero) says there is no coincidences in life, that everything happens for a reason and they make you stronger. I was strong before, but I am stronger now, and I’ll be stronger yet. I’m not writing this to tell you to be happy with your chronic illness, I’m not belittling your chronic illness, but learn to be the main character in your book. Be more than your disease. I say this because it is possible to be on the other side of happiness. It is possible to hope for treatment. It may not be today; it may not be tomorrow but the world is ever-changing and the world is here for you. The world is for your taking. So, take it for all its worth. I say that because this is the after. This is life beyond terminal.

    Community Voices

    Bertotlottis Syndrome- An uncommon cause of back pain

    It started over ten years ago when I was pregnant with my second child. I would get shooting pains down my left leg and buttock. Once while at work, I remember my coworkers thought I was going into labor because I was walking towards my patients’ room, and all of a sudden, I got a shooting pain in my left groin and buttocks that literally stopped me in my tracks. I asked my OBGYN about these weird pains, and she said it sounded like sciatica from the extra pressure of the baby, and it would get better after I delivered.

    I delivered my son, and the shooting pains did subside, but over the next year and a half, I started noticing lower back pain, a constant dull stiff kind of ache. It didn’t bother me much unless I sat, walked, or stood too long. It was easily relieved by changing my position and taking Tylenol. After a while, I decided I couldn’t keep taking Tylenol for the rest of my life, so I figured I needed to heal my back. I also had diastasis recti from pregnancy and knew that I needed to strengthen my core. The idea was to start an exercise program to strengthen my core, and by strengthening my core, my back wouldn’t have to work so hard, and maybe the pain would go away?

    I chose yoga! I was initially focused on core strength, and I began doing planks, arm balances, and all kinds of challenging poses. I ended up injuring my shoulder a few times because I lacked core strength and my alignment was off. I had no business as a self-taught yogi trying to do advanced poses. At this point, I decided to take a more gentle approach and started looking into restorative and therapeutic yoga. I had found my niche! I loved Iyengar yoga because of the focus on alignment and therapeutic approach. Just doing a few poses a day cat/cow, mountain, downward dog, tree, warrior, I started to notice my back pain was better. I no longer had to carry Tylenol everywhere, and I could sit, stand, and walk without pain!.

    My back didn’t bother me for years; I think because I did so much yoga. By so much, maybe 10-15 minutes of a couple poses a few times a week. I was also very intentional about my posture during the day. But then things started to get crazy again a few years later. I got diagnosed with lupus and couldn’t do the level of yoga I was doing before. I began to notice standing poses would exhaust me, my knees and hips would hurt, and it seemed almost any pose caused that sciatic and low back pain to exacerbate. Driving also became an issue. My 1 hr commute to work would leave me limping from my car. My hips and low back would get so sore just from driving to work.

    Since yoga was causing me issues, I turned to Yoga Nidra, chair yoga, and walking. But with walking, the same thing would happen, after about 10 minutes or so my hips would hurt, especially the right hip and I’d be limping, my knees hurt and felt like they couldn’t support my weight. This was when I got nervous because I thought I developed avascular necrosis. I told my rheumatologist, and she ordered Xrays. My hips looked fine on Xray, but she was concerned about my sacroiliac joint. It showed some irregularities,so she ordered an Xray of the SI joint. This Xray then showed both my SI joints had what looked like inflammatory changes. It also picked up “transitional vertebrae”. She orders an MRI to rule out active inflammation because she was concerned I had ankylosing spondylitis. The MRI was fine… it showed the same damage to my SI joints but no active inflammation. The MRI also confirmed Bertolittis syndrome and picked up Tarlov cysts. I was then referred to a sports medicine MD and physical therapy. This is where I am today, awaiting my appointments while dealing with this mildly annoying low back pain and difficulty walking, sitting, and standing. I thank God the pain isn’t severe and that I don’t have another inflammatory condition.

    At the beginning of my back pain journey, I knew something had to be wrong, but I also knew that the options for me would be medicine and/or surgery, and I didn’t want that. I knew yoga would help, and it did. Most of what I’ve read so far about Bertolotti’s syndrome and tarlov systs recommend surgery, and most patients have a lot of pain. This leaves me to wonder if yoga has kept my pain from getting severe? Will I need surgery to get rid of the pain ultimately? Will it get worse if I don’t do surgery? Have I been harming myself with my own self-prescribed exercise regimens? To be continued!

    Community Voices
    Community Voices

    just diagnosed..

    I've just been diagnosed with avascular necrosis in my right hip after 2 long years of my doctor telling me its sciatica....I knew it was something more ...... the first xray showed osteoarthritis in both hips but then my consultant sent me for an MRI as she thought there mustvs if been something they were missing with me having more pain in my right hip.....has anybody else found it a long hard task to reach a diagnosis?

    5 people are talking about this
    Community Voices

    Anyone else out there ever suffer from Avascular Necrosis? I’m 3 years post op and still disabled from my experience with it.

    6 people are talking about this
    Community Voices

    So been told I have #Avasculor Necrosis in BOTH WRISTS....anyone else have this??

    10 people are talking about this