Bucks for Debbie's Bones

In January 2014 I started having excruciating pain in my left shoulder. It was a pain that I had never experienced before. The best way I can describe it is that when I moved my arm it felt like someone was stabbing me with an ice pick. In March 2014 I had an MRI done. They called with the results and I was told I had Avascular Necrosis. I had never heard of that before. I did some research and was quite scared with what I found. It is caused by steroids which I have been on several times for pneumonia. Due to a loss of blood supply to my shoulder it was causing my bone to deteriorate and would eventually lead to collapse. I had "core decompression" surgery where they drill holes from the healthy bone into the dying bone in hopes to regenerate it. It is a temporary fix, but it worked. In learning more about the disease, I found it can spread to other joints. My Doctor said it's a "progressive and debilitating " disease. Unfortunately in January 2015 I was diagnosed with AVN in my right shoulder. I had the same surgery and it did not work. I had to stop working as I physically could not do my job. During this time I had gone to the ER with swelling in my left leg. I had a blood clot. Further testing revealed a rare clotting disorder called May-Thurner Syndrome. I was devastated. In June I started having pain in my hips and knees. After multiple MRI's I was told the Avascular Necrosis was also in both hips and both knees. Someone put me in touch with a Doctor in Ohio who is an expert on both diseases. About a month ago I had 21 vials of blood drawn to look for any underlying issues. There were several. The ones that concerned the Doctor the most were a high Factor V111 and Homocystinuria (a rare genetic condition). Both can cause rapid progression of the Avascular Necrosis and the Factor V111 will "vastly complicate" the blood clotting disorder. I have been so scared as in just a little over a year and a half I have been diagnosed with the AVN in 8 joints (both elbows were diagnosed a month ago). An article by a Doctor stated the pain from AVN is second only to bone cancer, and eventually all joints with it will need to be replaced. A couple of weeks ago the Doctor in Ohio said if I can get out there to see him, he may be able to help me. He wants to develop a treatment plan to treat the underlying issues and possibly halt or even reverse some of the damage. I cried when I heard this. It was the first time I had felt hope since I was diagnosed. If he can help me, my life could change dramatically. Even if I could avoid one or two surgeries, it would be a miracle. I am so blessed to have such caring and wonderful people in my life who want to help me. Words can not describe what this means to me. I love you all.