The story of Deborah
Hello, my Name Is Debbie I have AVN in my knee I found out in 12/2014 I am not sure exactly how I got AVN or really how long I had it the Doctors do not either.
They feel I may have developed AVN when I was exercising and tore my meniscus and hurt my pateller. I went to my Dr after doing some exercise and experienced a lightening bolt hit my knee,that did not go away, he did some tests , and wanted to send me for MRI to confirm the meniscus tear which it did ,but to my surprise I also that day was diagnosed with Avascular necrosis. I was told my nee looked like butter. Dr felt TKR (Total knee Replacement ) not an option at this time, as he said TKR may last 10 yrs , so we wait . Since then I have been on my own mission,to raise awareness, I started a support group on FB called Avascular Necrosis Lets spread The word to get more and better research: and I have been doing what I can to others to know about AVN : So You ask tell me more : Well I would be happy to Aprox 15 to 20,000 people a year are diag with AVN in the USA each year and Aprox 150.000 a year world wide. Its a tricky disease as it has several underlying issues that can cause AVN. It makes it very hard to treat. And there is no cure.
Avascular Necrosis (Osteonecrosis) Avascular necrosis (AVN), also called osteonecrosis, aseptic necrosis, or ischemic bone necrosis, is a condition that occurs when there is loss of blood to the bone. Because bone is living tissue that requires blood, an interruption to the blood supply causes bone to die. If not stopped, this process eventually causes the bone to collapse.
Avascular necrosis most commonly occurs in the upper leg. Other common sites are the upper arm, knees, shoulder, and ankles.But can attack any bone.
Who Gets Avascular Necrosis and What Causes It?
As many as 150,000 people develop AVN each year worldwide. Most are between ages 20 and 50. However many children also are suffering.with this disease in children its called Legg-Calve-Perthes disease. Many names and underlying issues for end result of a very painful bone disease. For healthy people, the risk of AVN is small. Most cases are the result of an underlying health problem or injury. Possible causes include:
Trauma to bone or joint, Lupus, Steroid use, cancer pts that had chemo,Dislocation or fracture of the thigh bone (femur). Knee and sometimes meniscus tears. This type of injury can affect the blood supply to the bone, leading to trauma-related avascular necrosis. AVN may develop in 20% or more of people who dislocate a hip.
Other ways to get AVN
Chronic corticosteroid use. Long-term use of these inflammation-fighting drugs, either orally or intravenously, is associated with 35% of all cases of nontraumatic AVN. Although the reason for this is not completely understood, doctors suspect these drugs may interfere with the body’s ability to break down fatty substances. These substances collect in the blood vessels — making them narrower — and reduce the amount of blood to the bone.
Excessive alcohol use. Much like corticosteroids, excessive alcohol may cause fatty substances to build in the blood vessels and decrease the blood supply to the bones.
Blood clots, inflammation, and damage to the arteries. All of these can block blood flow to the bones.
Other conditions associated with nontraumatic AVN include:
Gaucher’s disease, an inherited metabolic disorder in which harmful quantities of a fatty substance accumulate in the organs
Sickle cell disease
Pancreatitis, inflammation of the pancreas
HIV infection
Radiation therapy or chemotherapy
Autoimmune diseases
Decompression sickness, a condition that occurs when the body is subjected to a sudden reduction in surrounding pressure, causing the formation of gas bubbles in the blood
So You see its very complicated disease:
I remember the day i was told I had AVN i really was devastated, I have a disease that causes my bone to die , and noone wants to help it . So I cryed a few days ,felt sorry for myself as I did not want quality of life to change after all i was 51 at the time, wanted to travel, I enjoyed hiking in the park etc….But I took my frustration and started doing my own research , as well as researching Doctors (Orthos) that specialized in AVN and there were not many. So I set out to start a group , and I feel I can be helpful to others also suffering from this Rare Disease. Someday I hope we find a way to get to the root of the underlying problem and find a way to get treatment to stop the bones from dying, stem cells look promising but are very expensive and not covered by insurance in USA, Prolotherapy looks helpful but also costly. So I would like to that you for reading my story. And allowing me to spread awareness on AVN. Thank You and may we all have a pain free day .