Do you live with Avascular Necrosis (AVN)/Osteonecrosis (ON)? How has it affected your life? What advice do you have for others? Please share in the comment section below this post.
What is Avascular Necrosis?
Avascular necrosis (also osteonecrosis, bone infarction, aseptic necrosis, ischemic bone necrosis, and AVN) is a disease where there is cellular death (necrosis) of bone components due to interruption of the blood supply. Without blood, the bone tissue dies and the bone collapses. If avascular necrosis involves the bones of a joint, it often leads to destruction of the joint articular surfaces.
In the U.S., how many people live with AVN/ON?
About 10,000 to 20,000 people develop avascular necrosis of the head of the femur in the US each year. When it occurs in children at the femoral head, it is known as Legg-Calvé-Perthes syndrome.
What is it like to live with AVN?
Everyone with AVN is affected differently, depending on where the AVN is located, and at what stage it is in. In early stages, it can resemble soreness or cause limping, if it is located in the hips. If not treated early, AVN can progress quickly and surgery may result. Once the bone has deteriorated, it is difficult to return the affected bone to normal. As its worst, the bone will collapse or become arthritic.
For many who live with AVN, it physically limits them in their daily life.
What are the known causes?
There are many theories about what causes avascular necrosis. Proposed risk factors include, chemotherapy, alcoholism, excessive steroid use, post trauma,caisson disease (decompression sickness),vascular compression, hypertension, vasculitis, arterial embolism and thrombosis, damage from radiation, bisphosphonates (particularly the mandible), sickle cell anaemia, Gaucher's Disease, and deep diving. In some cases it is idiopathic (no cause is found). Rheumatoid arthritis and lupus are also common causes of AVN. Prolonged, repeated exposure to high pressures (as experienced by commercial and military divers) has been linked to AVN, though the relationship is not well-understood.
How is it diagnosed?
Orthopaedic doctors most often diagnose the disease except when it affects the jaws, when it is usually diagnosed and treated by dental and maxillofacial surgeons.
In the early stages, bone scintigraphy and MRI are the diagnostic modalities of choice. In the early stages of avascular necrosis, X-rays usually appear normal and do not pick up on damage from AVN.
How is it treated?
A variety of methods are now used to treat avascular necrosis,the most common being the total hip replacement, or THR. However, THRs have a number of downsides including long recovery times and short life spans. THRs are an effective means of treatment in the geriatric population; however, doctors shy away from using them in younger patients due to the reasons above. Some doctors also prescribe bisphosphonates (e.g. alendronate) which reduces the rate of bone breakdown by osteoclasts, thus preventing collapse (specifically of the hip) due to AVN. Other treatments include core decompression, where internal bone pressure is relieved by drilling a hole into the bone, and a living bone chip and an electrical device to stimulate new vascular growth are implanted; and the free vascular fibular graft (FVFG), in which a portion of the fibula, along with its blood supply, is removed and transplanted into the femoral head. Progression of the disease could possibly be halted by transplanting nucleated cells from bone marrow into avascular necrosis lesions after core decompression, although much further research is needed to establish this technique.
Hello, thought I'd check out your blog seeing as you came across mine. You and I are similar in age and I started having pain due to AVN in September 2011. I was wondering if you'd been checked for clotting disorders? It's possible mirena caused your AVN. Progesterone can cause AVN in people who have clotting disorders specifically Factor V. Good Luck. Stay strong :)
ReplyDeleteThanks for coming by! I read your story yesterday and it really got me thinking. Just a few days ago, I was meeting with my rheumatologist and I asked him about clotting since I tested with high levels for "D-dimer" a few months back. He said that indicated a "clotting abnormality." I am waiting on the results of a re-test and he was going to refer me to a hematologist if the levels hadn't decreased. Did a hematologist determine your clotting disorder? I hope this is another important piece of the puzzle. Thanks so much for helping me try to connect some dots. I look forward to watching your website evolve! It's nice to finally connect with others who live with AVN. Thanks again and good luck to you as well! :)
DeleteHi, I have lived with avascular necrosis for about 10 years now. I've had two total hip replacements, and now it appears my right shoulder will be next. In 1992, I had an AVM bleed in my brain. I spent 3 weeks in the hospital. My stay began with a blood clot in my brain, and large steroid doses to dissolve the clot so I could have surgery to repair the damaged area of my brain. After surgery, I was able to return to my life with my family, and raise my 3 small surgery with only minor limitations. I am so thankful that I was given a second chance at life. Approximately 12 years later, I began having severe pains in my hips, across my lower back, and down my leg. I was found to have Avascular Necrosis, most likely from the steroids that saved my life. Over the course of the next 2 years, following lots of steroid injections, I had 2 total hip replacements over an 8 month period. I now find, 7 years later that The disease is attacking my shoulders. I'd love to talk with people who are dealing with this disease. I am so thankful to be able to live my life, but the years of pain are taking a toll on me.
ReplyDeleteI was diagnosed with AVN approximately 11 yrs ago. At the time, I was 39 years old. I had been in the hospital for week that year with severe asthma, dr gave me tons of steroids intravenously to save my life. About 6 weeks later, started having severe hip pain, went back to dr and he shrugged it off as I'm almost turning 40 and I would start just having a few aches and pains. It continually got worse, about 4 months later went to orthopedic, found out I had AVN in both hips. My joints at the time were already completely dissolved, the pain was tremendous. Had both hips replaced and 6 months later started having tremendous knee pain, ortho said no way could it be AVN already so soon in both knees. Did MRI and yep, had both knees replaced. So within 11 months, I had both hips and both knees totally replaced. Now having tremendous pain at the top of my scar on both knees, ortho said knees look good but pain is getting unbearable. I'm scared that the AVN has moved up farther in my femur, has anyone experienced this???
ReplyDeleteHey anonymous i cant imagine what you have gone through having both your hips and knees replaced. i am 25 and i am also having umbearable pain on my hips the doctor thinks that its an AVN since i have been on steroids for 2 years,but now it haas been tapered down in a process of stoping it.an xray was done and it showed nothing so i am going for a bone scan on my next appointment.i am terrified of the thought of hip replacement i just hope it wont get to that.but it seems the only best cure is the hip replacement.but its good to talk to people who are going through that.
ReplyDeleteHi,
ReplyDeleteAvn of the femur can be cured with medications or atleast the need for surgery can be deferred till atleast 10-12 years with only medications which are easy to take.
Its really astonishing to see patients without pain and avoiding surgeries like hip replacements .