Educate – Avascular Necrosis-Osteonecrosis Education and Resources

Shining Light on Avascular Necrosis-Osteonecrosis Awareness Day: A Call for Unity

As we approach November 29, a day etched on our calendars as Avascular Necrosis-Osteonecrosis Awareness Day, the enthusiasm is palpable. Originating in states like Ohio, Pennsylvania, Iowa, Georgia, and Tennessee, and several other states this day has grown beyond its regional roots, capturing hearts and minds across the nation. A celebration of resilience, unity, and the strength of those battling this rare disease, the journey has just begun. We still have many states that have yet to recognize this awareness day.

In the spirit of reflection and progress, let’s take a closer look at what Avascular Necrosis-Osteonecrosis is and why it deserves the spotlight. Osteonecrosis occurs when the blood supply to a bone is disrupted, leading to the death of bone tissue. While it can affect anyone at any age, the rarity of this condition often results in delayed diagnosis and limited awareness.

Imagine a disease that doesn’t discriminate by age, gender, or background—a condition that can strike unexpectedly, altering lives in its wake. Avascular Necrosis-Osteonecrosis fits this description, emphasizing the importance of education and advocacy. It’s crucial to understand the pain that accompanies this condition. The affected bones, deprived of essential blood supply, lead to excruciating pain, impacting mobility and quality of life.

This awareness day isn’t just a commemoration; it’s a call to action. The commendable efforts of states like Ohio, Pennsylvania, Iowa, Georgia, and Tennessee have set the stage for a nationwide movement. Proclamations have been issued, voices have been amplified, and the journey towards recognition has begun.

As we celebrate the strides made, it’s essential to acknowledge the work that lies ahead. Advocacy is a journey, not a destination, and the goal is clear: to have all 50 states recognize and celebrate Avascular Necrosis-Osteonecrosis Awareness Day by 2024. This ambitious vision requires a collective effort.

To our esteemed congressmen, senators, and the President of the United States, we extend an invitation to join us in this noble cause. Avascular Necrosis-Osteonecrosis doesn’t discriminate based on political affiliations, and neither should our pursuit of awareness. We implore you to consider the impact of this rare disease on your constituents, urging you to champion the cause for an awareness day in every state.

It’s not a daunting task; it’s an opportunity for bipartisan collaboration, demonstrating a commitment to the health and well-being of the American people. A simple proclamation can go a long way in raising awareness, fostering empathy, and providing support to those affected by Avascular Necrosis-Osteonecrosis.

In the coming year, let’s collectively work towards making November 29 a day of national significance. Together, we can ensure that the stories of those touched by Avascular Necrosis-Osteonecrosis are heard, recognized, and celebrated from coast to coast. The journey has just begun, and with your support, we can light up the map with awareness, compassion, and unity.

Sincerely

Deb Andio

Founder

Avascular Necrosis-Osteonecrosis SuppooInt’l

http://www.avascularnecrosiseducation.com

“Like the majestic Phoenix that rises from the ashes, those of us living with Osteonecrosis are on a journey of resilience and hope. As we continue to advocate for awareness, we believe that our Awareness Day will soon shine worldwide, illuminating the path for understanding, support, and compassion. Together, our voices will soar, echoing the strength that lies within each of us.”

Avascular Necrosis-Osteonecrosis Awareness Day 2021

Hard to believe another awareness day has arrived.

It’s been a struggle and challenge to get all 50 states to issue a proclamation: but being persistent is becoming rewarding. We now have about 1/2 the USA on board as 29 November being AVN-ON

To all those living with Osteonecrosis like myself, know I will not give up until every state has issued the proclamation.

We live with pain and uncertainty every day. But I assure you I will not give up until it’s recognized in every state.

Happy AVN-ON Awareness Day.

Wish you all a pain free day

Thank You Arizona

The good news keeps rolling in

Rare Disease Day is February 29 usually 28 on non leap years.

So as you know I have been working very hard on November 29 being National – Avascular Necrosis Osteonecrosis awareness day and all states have come on board so far but still waiting to hear from maybe 10 states.

They are doing all they can. And I am so pleased many states have issues proclamations for November 29 and many still are in the process.

Today The State of Arizona sent a proclamation for rare disease awareness we got the entire week February 20-27

And they will also be recognizing November 29

So blessed.

Hard work pays off

Thank you State of Arizona

Deb Andio

Founder Avascular Necrosis Osteonecrosis Support Int’l

#Osteonecrisis #AvascularNecrosis

Thank You Alabama

We are moving along state by state

Alabama is giving us for rare disease awareness the week of February 20,2020 to February 27, 2020 as Avascular Necrosis Osteonecrosis Awareness Week!!!

And on November 29 Avascular Necrosis Osteonecrosis Awareness Day!!

Thank You Proud Moment

Thank you to Youngstown Ohio Mayor Jamael Tito Brown and Senator Michael Rulli and Senate President Larry Obhof

What an honor

Help me raise awareness today and please like and share this post.

Thank You.

1st annual

#AvascularNecrosis #Osteonecrosis

#AwarenessDay #November29

AvascularNecrosis/Osteonecrosis Support Int’l

https://www.vindy.com/news/local-news/2019/11/city-state-recognize-poland-woman-with-rare-disease/

Please Help Me Raise Awareness©

I need you to help me get to my goal

I have started a petition to get the rare disease Osteonecrosis recognized by asking for an awareness month week or day. If they won’t allow a month.

I could use as many supporters as possible to help me and share this.

No money at all is needed.

I hope you will help me raise awareness

Take Action: We Need Osteonecrosis Awareness To Have The Month Of October to Recognized & raise awareness #Osteonecrosis #AvascularNecrosis please help and sign and share

Link requesting osteonecrosis awareness-month-october

Or copy and paste

https://www.petition2congress.com/ctas/osteonecrosis-awareness-month-october

To President Donald Trump, The U.S. House and The U.S. Senate
We, the patients of a rare disease called Osteonecrosis respectfully ask the United States of America in this petition to the US Congress to pass legislation to establish and recognize October as Osteonecrosis Awareness Month in the United States.
The people of the United States are called upon to observe the month of October with appropriate educational and awareness opportunities, and recognition.
With hundreds of thousands of US residents suffering from this disease and more being diagnosed everyday , there is a need for this community to have an active voice and recognition.
It is happening in all age groups from child to elderly

Osteonecrosis, also known as Avascular necrosis (AVN), aseptic necrosis or ischemic bone necrosis, is a disease resulting in the death of bone cells. If the process involves the bones near a joint, it often leads to collapse of the joint surface and subsequent debilitating often crippling arthritis due to an irregular joint surface.

Although it can happen in any bone, osteonecrosis most commonly affects the ends (epiphysis) of long bones such as the femur (thigh bone). Commonly involved bones are the upper femur (ball part of the hip socket) the lower femur (a part of the knee joint), the upper humerus (upper arm bone involving the shoulder joint), and the bones of ankle joint. The disease may affect just one bone, more than one bone at the same time, or more than one bone at different times.
Osteonecrosis can cause severe pain and disability. Early diagnosis and early treatment may improve the outcome.
Osteonecrosis may result from use of glucocorticoid (sometimes called corticosteroid) medicine or from drinking too much alcohol but there are many causes and also some that are unknown.
Though osteonecrosis can occur in almost any bone of the body, the hips, knees,ankle and shoulders are the most common sites affected.
The cause and treatment for osteonecrosis of the jaw differs from that for osteonecrosis found elsewhere.

The most common causes of osteonecrosis are:

Serious trauma to bone or joint (injury), which interrupts a bone’s blood supply
Corticosteroid medications (such as prednisone, cortisone or methylprednisolone), mainly when a high dose is used for a prolonged period of time
Excess alcohol consumption
Systemic lupus erythematosus

Other risk factors for osteonecrosis include:
Decompression disease (also called the “Bends” that can occur with scuba diving)
Blood disorders such as sickle cell anemia, antiphospholipid antibody syndrome (APS) and lupus anticoagulant, factor v leiden, and others
HIV infection (the virus that causes AIDS)
Radiation and Chemotherapy
Bisphosphonates, which may be linked to osteonecrosis of the jaw
Organ transplants

Osteonecrosis is not life-threatening, but it is debilitating and hurts our quality of life. Although it isn’t well-known and its exact cause is unknown, AVN-ON affects 10,000-to-20,000 Americans annually. Between 30 and 60 percent of patients will experience AVN-ON bi-laterally, which means both sides so if one hip or knee has it most likely so will the other.

Please help those of us that suffer from this condition by creating more research , funding studies and allowing us the recognition, as only through education, research and awareness can we get better treatment options, earlier diagnosis and hopefully prevention.

Thank You

Deb

Hip Osteonecrosis -Stages- Info

Osteonecrosis of the Hip

Osteonecrosis of the hip is a painful condition that occurs when the blood supply to the head of the femur (thighbone) is disrupted. Because bone cells need a steady supply of blood to stay healthy, osteonecrosis can ultimately lead to destruction of the hip joint and severe arthritis.

Osteonecrosis is also called avascular necrosis (AVN) or aseptic necrosis. Although it can occur in any bone, osteonecrosis most often affects the hip. More than 20,000 people each year enter hospitals for treatment of osteonecrosis of the hip. In many cases, both hips are affected by the disease.

Doctor Examination

After discussing your symptoms and medical history, your doctor will examine your hip to discover which specific motions cause your pain.

Patients with osteonecrosis often have severe pain in the hip joint but relatively good range of motion. This is because only the femoral head is involved in the earlier stages of the disease. Later, as the surface of the femoral head collapses, the entire joint becomes arthritic. Loss of motion and stiffness can then develop.

Osteonecrosis is typically seen as a wedge-shaped area with a dense whitish sclerotic border in the superior lateral portion of the femoral head. On lateral view, a lucent line called a “crescent sign” can often be seen just below the surface of the femoral head.

Magnetic resonance imaging (MRI) scans.Early changes in the bone that may not show up on an x-ray can be detected with an MRI scan. These scans are used to evaluate how much of the bone is affected by the disease. An MRI may also show early osteonecrosis that has yet to cause symptoms (for example — osteonecrosis that may be developing in the opposite hip joint).

Stages of Avascular Necrosis-Osteonecrosis Hip

photo credit AAOS American Academy of Orthopaedic Surgeons

Video Link of Stages of Avascular Necrosis-Osteonecrosis Hip

Dr Nabil Ebraheim Shows Info on Hip Avascular Necrosis

You can have Avascular Necrosis in one hip or both , if in both hips it’s called bilateral which means both sides.

And if you have Avascular Necrosis- osteonecrosis in more that 3 different joints

Multifocal osteonecrosis is defined as disease involving three or more anatomic sites.

Example

Hips

Knees

Shoulder

That is called multi focal Avascular Necrosis- Osteonecrosis

Multifocal osteonecrosis Article in The Journal of Rheumatology 25(10):1968-74 · November 1998

Multifocal ON, which ON involves three or more distinct anatomical sites [5], is rare, being seen in only approximately 3% of all ON patients [5]. Corticosteroid use is a known risk factor for multifocal ON [5,6], as are certain comorbidities, including systemic lupus erythematosus (SLE), renal failure, leukemia, and lymphoma [5,7,8]. However, almost all studies of multifocal ON are case reports and case series, so the inci- dence and clinical characteristics of the condition remain poorly defined [5,[8][9][10][11][12][13]. …

Non-operative Treatment

There is no known pharmaceutical cure for osteonecrosis. Several non-operative treatments have been studied including hyperbaric oxygen therapy, shock wave therapy, electrical stimulation, pharmaceuticals (anticoagulants, bisphosphonates, vasodilators, lipid lowering agents), physiotherapy and muscle strengthening exercises, and combinations thereof. There are conflicting results for some of these treatments, therefore, rigorous, randomized controlled trials with large numbers of patients are still needed to determine the effectiveness of these treatments. Non-operative treatment may be part of a wait-and-see approach based on the size of the area of dead bone. Non-operative treatments cannot be labeled as conservative, since many of them do not slow the progression of the disease or lead to avoidance of a total hip arthroplasty. Most are simply pain-relieving at best.

Reduced weight bearing does not alter the course of the disease and is not a treatment. It may be used to simply permit the patient to better cope with pain until appropriate treatment is instituted.

Surgical Treatment

Core decompression – This surgical procedure removes or drills a tunnel into the area of the affected bone, which reduces pressure within the bone. Core decompression works best in people who are in the earliest stages of osteonecrosis, before the collapse of the dead bone. This procedure sometimes can reduce pain and slow the progression of bone and joint destruction in these patients.

Osteotomy – This surgical procedure reshapes the bone to reduce stress on the affected area. There is a lengthy recovery period, and the patient’s activities are very limited for 3 to 12 months after an osteotomy. This procedure is most effective for patients with advanced osteonecrosis and those with a small area of affected bone.

Bone graft – Bone grafts can be used as part of the surgical treatment for osteonecrosis. Bone grafts can use bone from the same patient or donor bone. Bone graft or synthetic bone graft can be inserted into the hole created by the core decompression procedure. A specialized procedure, called vascularized bone grafting, involves moving a piece of bone from another site (often the fibula, one of the bones of the calf, or the iliac crest, a portion of the pelvic bone) with a vascular attachment. This allows for support of the diseased area as well as a new source of blood supply. This is a complex procedure and is performed by surgeons that are specially trained. Another type of bone grafting, involves scraping out all of the dead bone and replacing it with healthier bone graft, often from other portions of the patient’s skeleton.

A unique type of bone graft involves the use of a patient’s own cells that are capable of making new bone. Often these cells are a type of stem cell from the bone marrow or other bodily tissues. There has been increasing interest in the potential of stem cell therapy. This is also being studied for the treatment of osteonecrosis. Mesenchymal stem cells, which are a type of ‘adult’ stem cell, can grow and develop into many different cell types in the body. Physicians take the patient’s own mesenchymal stem cells (autologous transplant) and place them into the affected bone to stimulate bone repair and regeneration.

Arthroplasty/total joint replacement – Total joint replacement is the treatment of choice in late-stage osteonecrosis when the joint is destroyed. In this surgery, the diseased joint is replaced with artificial parts. It may be recommended for people who are not good candidates for other treatments, such as patients who do not do well with repeated attempts to preserve the joint. Various types of replacements are available, and people should discuss specific needs with their doctor.

For most people with osteonecrosis, treatment is an ongoing process. Doctors may first recommend the least complex and invasive procedure, such as protecting the joint by limiting high impact activities, and watch the effect on the patient’s condition.

Other treatments then may be used to prevent further bone destruction and reduce pain such as core decompression with bone graft/stem cell therapy. Eventually patients may need joint replacement if the disease has progressed to collapse of the bone. It is important that patients carefully follow instructions about activity limitations and work closely with their doctor to ensure that appropriate treatments are used.

Investigational Therapies

Scientists, researchers, and physicians continue to pursue a better understanding of how this disease occurs as well as compare the effectiveness of current and newly developed therapies. Often, this requires a clinical trial to answer questions and gain additional knowledge.

Information on current clinical trials is posted on the Internet at www.clinicaltrials.gov. All studies receiving U.S. government funding, and some supported by private industry, are posted on this government web site.

For information about clinical trials being conducted at the NIH Clinical Center in Bethesda, MD, contact the NIH Patient Recruitment Office:

Toll-free: (800) 411-1222
TTY: (866) 411-1010
Email: prpl@cc.nih.gov

Nontraumatic Osteonecrosis of the Femoral Head: Where Do We Stand Today? A Ten-Year Update.

By Dr. Michal Mont MD

There is hope

Treatment

The goal is to prevent further bone loss.

Medications and therapy

In the early stages of avascular necrosis, symptoms might be eased with medication and therapy. Your doctor might recommend:

Nonsteroidal anti-inflammatory drugs.Medications, such as ibuprofen (Advil, Motrin IB, others) or naproxen sodium (Aleve) might help relieve the pain associated with avascular necrosis.
Osteoporosis drugs. Medications, such as alendronate (Fosamax, Binosto), might slow the progression of avascular necrosis, but the evidence is mixed.
Cholesterol-lowering drugs. Reducing the amount of cholesterol and fat in your blood might help prevent the vessel blockages that can cause avascular necrosis.
Blood thinners. If you have a clotting disorder, blood thinners, such as warfarin (Coumadin, Jantoven), might be recommended to prevent clots in the vessels feeding your bones.
Rest. Reducing the weight and stress on your affected bone can slow the damage. You might need to restrict your physical activity or use crutches to keep weight off your joint for several months.
Exercises. A physical therapist can teach you exercises to help maintain or improve the range of motion in your joint.
Electrical stimulation. Electrical currents might encourage your body to grow new bone to replace the damaged bone. Electrical stimulation can be used during surgery and applied directly to the damaged area. Or it can be administered through electrodes attached to your skin.

Surgical and other procedures

Because most people don’t develop symptoms until avascular necrosis is fairly advanced, your doctor might recommend surgery. The options include:

Core decompression. The surgeon removes part of the inner layer of your bone. Besides reducing your pain, the extra space within your bone stimulates the production of healthy bone tissue and new blood vessels.
Bone transplant (graft). This procedure can help strengthen the area of bone affected by avascular necrosis. The graft is a section of healthy bone taken from another part of your body.
Bone reshaping (osteotomy). A wedge of bone is removed above or below a weight-bearing joint, to help shift your weight off the damaged bone. Bone reshaping might enable you to postpone joint replacement.
Joint replacement. If your diseased bone has collapsed or other treatments aren’t helping, you might need surgery to replace the damaged parts of your joint with plastic or metal parts.
Regenerative medicine treatment. Bone marrow aspirate and concentration is a newer procedure that might be appropriate for early stage avascular necrosis of the hip. Stem cells are harvested from your bone marrow. During surgery, a core of dead hipbone is removed and stem cells inserted in its place, potentially allowing for growth of new bone. More study is needed.

Talk to your doctor about treatment options and the stage of your Avascular Necrosis of the Hip.

If this helped you please like comment or share this.

Thank You

Wishing you a pain free day

Debbie

You won’t keep me down ©

Osteonecrosis can be painful you never know when the pain will come or go.

But I do know it’s already taken my job away from me.

I love the optical field. But the pain was too intense.

Well I’m back in school learning something new.

#YourNeverToOldToLearn

©Debla2019

Tired of Doctors? I am also.

If you are like me,your sick of seeing doctors , some see so many my heart breaks for them, pcp, orthos, hematologist, cardiologists, pain management, endocrinologist dentists, optometrist whatever it just gets tiring. then you might get so nervous at your appointment you forget to ask specific questions.

Or maybe your anxiety has gotten you to a place where your heart is beating out of your chest, and your voice quivers or you just become blank.

Either way, having a list of things you mean to ask will help not only you but your doctor be able to better communicate.

So here we go:

1. What is the exact name of whatever is wrong with me? 1a if Osteonecrosis what stage is it? 1-2-3-4-5-5a-6

2. Is this something that is treatable and may possibly go away, or heal on its own or is this something that is chronic?

3. What are the short-term and long-term prognoses?

4. What are the short-term and long-term goals with treatment?

Example : Prp injections- physical therapy- hyperbaric oxygen-water therapy- stem cell treatments- joint replacement .

5. Is this something that genetically I can pass down to my child(ren)?

5a. Will you check me for underlying clot issue like Factor V Leiden-MTHFR-eNOS

6. What do you recommend as far as treatment?

7. What are the medications you recommend? I heard and read statins like Zocor and Lipitor can help lower lipids (fat) in the blood which can help blood flow better. I personally took simvastatin for 6 m and it helped me. I also during that time changed how I ate to consume less fatty meat cheeses etc

To lower my cholesterol on my own and I must say I am grateful I tried this.

Not only do I love eating REAL food but my blood work shows fantastic results and my pain is less.

So it’s good to talk to your doctor about this stuff also. Of course your doctor is not a specialist in nutrition which is kinda sad , you’d think they would teach that in medical school. But a good plant based diet was a great change for me.

8. How will this condition and/or medications affect my life?

9. Is there a specialist I can see? So I may try to avoid a joint replacement?

10. Will this condition or medications affect my ability to exercise? Walk-Bike- Swim.

Will this be temporary?

11. Is there a special diet that might ease symptoms or improve this condition?

For me personally it is plant based. I will eat meat (beef) rarely . Chicken or fish 1x a week but I am all about plant based.

My pain is lessened by over 60percent. I still have pain I’m not cured but I’m not in constant misery anymore. I rarely take a pain pill.

Never start or stop anything without talking to your doctor.

As always, if you have any concerns about your health, it’s always best to consult your primary care physician.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Specific Questions To Ask Your Otho

What stage is osteonecrosis?

Will I be checked to make sure it also is not affecting other joints since I have pain in other bones/joints?

What is your treatment plan for Osteonecrosis ?

Why is this procedure being recommended? Are there alternatives?

What are the benefits of this procedure in terms of pain relief, functioning/mobility? How long will the benefit last?

What are the risks involved?

What is the success rate for this procedure?

What is the procedure called? How is it done?

How many patients with osteonecrosis do you see a year?

If Surgery Will this surgery solve the problem? Will any more surgery be required in the future?

How many of these procedures are annually performed at this hospital?

How many patients with osteonecrosis do you see a year?

What percentage of patients improve following the procedure?

What will happen if I don’t have the surgery now?

If I want a second opinion, whom can I consult?

Will I need any tests or medical evaluations prior to the surgery?

What kind of anesthesia will be used?

Are there possible after effects or risks?

Will I meet with the anesthesiologist in advance? Will her or she know my needs/allergies?

What kind of implant or prosthesis will be used? What are the outcomes using this device?

How long will it last?

Will I have pain following the procedure? What pain relief or pain control measures will I be given?

How long will the recovery take? What are my limitations during recovery?

Will I need assistance at home afterwards? For how long?

What will discharge instructions be?

Will I have any disability following surgery? Will I need physical therapy?

When can I return to work? When can I drive my car? When can I have sexual activity?

Are there any materials about this surgery that I can review?

What will I have for pain management?

Are their any patients I can ask about their experience?

Here is some info you may be interested in.

Clinical Trials

Atorvastatin to Prevent Avascular Necrosis of Bone in Steroid Treated Exacerbated Systemic Lupus Erythematosus

https://clinicaltrials.gov/ct2/show/NCT00412841

Statin therapy decreases the risk of osteonecrosis in patients receiving steroids.

https://www.ncbi.nlm.nih.gov/m/pubmed/11347831/

Aseptic osteonecrosis of the hip in the adult: current evidence on conservative treatment

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4832407/

Steinberg Stages Of Osteonecrosis-Avascular Necrosis

Steinberg Staging Of Avascular Necrosis/ Osteonecrosis

History and etymology

It is based on the radiographic appearance and location of lesion. It primarily differs from the other systems by quantifying the involvement of femoral head which allows direct comparison between series1. Seven stages of involvement are identified. Following staging, extent of involvement of femoral head is recorded as mild, moderate or severe.

Classification

stage 0: normal or non-diagnostic radiographs, MRI and bone scan of at risk hip (often contralateral hip involved, or patient has risk factors and hip pain)

stage I: normal radiograph, abnormal bone scan and/or MRI

stage II: cystic and sclerotic radiographic changes

stage III: subchondral lucency or crescent sign

stage IV: flattening of femoral head, with depression graded into

mild: <2 mm

moderate: 2-4 mm

severe: >4 mm

stage V: joint space narrowing with or without acetabular involvement

stage VI: advanced degenerative changes

Quantification of extent of involvement is necessary for stages I to V:

stage I and II

A, mild: <15% head involvement as seen on radiograph or MRI

B, moderate: 15% to 30%

C, severe: >30%

stage III

A, mild: subchondral collapse (crescent) beneath <15% of articular surface

B, moderate: crescent beneath 15% to 30%

C, severe: crescent beneath >30%

stage IV

A, mild: <15% of surface has collapsed and depression is <2mm

B, moderate: 15% to 30% collapsed or 2 to 4mm depression

C, severe: >30% collapsed or >4mm depression

stage V

A, B or C: average of femoral head involvement, as determined in stage IV, and estimated acetabular involvement.

Steinberg Staging Osteonecrosis