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AVN What the heck is AVN well let me tell you

Posted on April 22 2015

AVN What the heck is AVN well let me tell you
Hi everyone Im Debbie, I was just diag: with AVN 01/2015, and I am not asking for money for myself, I am asking you to donate to a cause. AVN is a Very painful bone disease. No one with Avascular Necrosis (AVN) should have to have to have their joints replaced in a time of regenerative medicine. Or just live in constant severe pain.
What are the symptoms of Osteonecrosis?Symptoms of Avascular Necrosis
In its early stages, AVN typically cause no symptoms in the beginning its a silent invader; however, as the disease progresses it becomes painful. At first, you may experience pain when you put pressure on the affected bone. Then, pain may become more constant. If the disease progresses and the bone and surrounding joint collapse, you may experience severe pain that interferes with your ability to use your joint. The time between the first symptoms and collapse of the bone may range from several months to more than a year

It is second only in pain to bone cancer, the death of the bones/joints is the same.Treatments for it are mostly surgical, with no way to predict or guarantee outcomes or results.ON/AVN does not respect age, gender, or ethnic background; it can strike anyone at any time. From children to adults . Of the 20,000 joint replacements in the USA every year, at least 20 percent of them are due to ON/AVN.ON/AVN is still considered a rare condition with not all orthopedic doctors being equally experienced in diagnosing and/or treating it. Valuable time is lost in treating the patient,sometimes leading to a collapsed or otherwise destroyed joint.Very little research is on-going for ON/AVN, as expected with any ‘orphan disease’, or a disease that has a growing number of patients but has not yet reached the numbers of more wide-spread conditions, such as heart disease or cancer.There is no known cure for ON/AVN. We desperately need to turn this around.

ON/AVN is very painful for most patients, and can quickly lead to loss of mobility and/or use of the affected limb. It is not easy to wait for a treatment or procedure that will be of some real help when one is suffering a great deal of pain. For far too many, there are traumatic personal losses such as jobs, over-all family income, and sometimes, unfortunately, close relationships. If avascular necrosis is caught early, treatment may involve taking medications to relieve pain or limiting the use of the affected area. If your hip, knee, or ankle is affected, crutches may be necessary to take weight off the damaged joint.But can effect any joint including jaws, shoulders elbows ankles etc.. Your doctor may also recommend range-of-motion exercises to help keep the affected joint mobile.

While these nonsurgical treatments may slow the progression of avascular necrosis, most people with the condition eventually need surgery.
Surgical options include:

Bone grafts, which involve removing healthy bone from one part of the body and using it to replace the damaged bone
Osteotomy, a procedure that involves cutting the bone and changing its alignment to relieve stress on the bone or joint
Total joint replacement, which involves removing the damaged joint and replacing it with a synthetic joint
Core decompression, a procedure that involves removing part of the inside of the bone to relieve pressure and allow new blood vessels to form
Vascularized bone graft, a procedure that uses the patient's own tissue to rebuild diseased or damaged hip joints; the surgeon first removes the bone with the poor blood supply from the hip and then replaces it with the blood-vessel-rich bone from another site, such as the fibula, the smaller bone located in the lower leg.

AVN is a silent invader. The "Orphan disease" as very little is known about it. It is a condition where the blood supply to bone becomes obstructed and the bone starts to die. As the bone dies it collapses, leading to cartilage and joint degeneration and arthritic pain. Many are forced to use crutches or wheelchairs who were used to having very productive lives just months before. I was one of those people . Worked 40 hrs a week , exercised and felt pretty darn good. One day I was exercising and felt what seemed like a bolt of lightening hit my knee. And it was all I could do from cry.

In my case After seeing a few Drs and nothing helped,MRI and Xray Ultra Sound confirmed I have AVN . Most only know they have it when it is a bit late, because even Dr's dont think about AVN. ​ AVN is barely understood. It has no major research effort behind it, no major advocate, and no major funding or support system. And your met with more questions than answers,as well as fear of what will happen to me, and no appealing alternatives. And yet it is a condition with great promise to spear head the application of regenerative medicine, and one that can affect treatment of so many other conditions. Now I dont know about you but I like my original parts. Doctors say Im to young for knee replacement, so what they will allow the pain to get worse and worse til the bones and joints collapse ? Seems extreme when today there are stem cell treatment that can help save the effected joint(of course not covered by insurance). And it can run from 8k to 15k depending on where you live in the USA.

Stem cells offer true hope for AVN, so many patients are forced to choose replacements that don't best serve them based on their finances and joint replacments depending on if its a knee 20k, hip 35k seems only right that stem cell therapy is more cost effective, as you are using your own stem cells. Doctors hands are often tied are tied, waiting for clinical studies that are expensive, and some just discuss replaceing parts. I am personally trying to save my own money for the procedure, but I am asking for your help to get better funding, research, treatment options.

Yes I wish I hit the lottery so I could have it done now as its just going to get worse. So I pray everyday that it will remain as is or pray for a miracle. I cant work due to pain so I am thankful for husband . But again I am not asking for me. I am asking to support my cause in supporting the The National Osteonecrosis Foundation
and
The Center for Osteonecrosis Research and Education so we can get better research, testing solutions to help put an end to AVN .

Thank you for reading my story
Deb.

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