I haven’t posted on here in several months. What was supposed to be a short break from my site ended up being longer than I anticipated. However, all the while I have been reading everyone’s comments, feedback and news.
I moved in the spring to an apartment with fewer stairs. Moving was not an enjoyable experience, I wasn’t really physically up to it and it took me months to unpack. My husband and I went on our first vacation in over two years since I was diagnosed with Osteonecrosis/Avascular Necrosis. It was a beach vacation so it didn’t entail much walking for me.
I had been on the pain medication tramadol for 16 months and decided in May of this year to see if I could cut down on my intake. I was taking 50mg of tramadol 3 times daily. By early June I had cut it down to 25mg 3 times a day while still managing to keep my pain under control. I was extremely happy to have cut my dosage down by such a degree, but when I tried to decrease it even more the pain increased and was no longer manageable.
I decided to see another orthopedic specialist in San Francisco, Dr. Scott Dye at California Pacific Medical Center (I almost can’t keep track of how orthopedic specialists I’ve seen at this point). Dr. Dye ordered a bone scan (I had not had one since November 2011) because he wanted to look at the vascularization of the area around my knees and femurs (as a reminder to those who may not have read all my posts, my ON/AVN was in patches in both my femurs). The bone scan came back looking perfect; he couldn’t see ON/AVN anymore. I told him I didn’t understand why I continued to have consistent pain and increased pain with increased activity. Dr. Dye decided that I probably had severe patellafemoral syndrome and synvonitis which were caused by and secondary to my ON/AVN. Dr. Dye recommended I rest my knees and give my body time to heal. For six weeks I tried to cut down my activity. This was hard to do considering I was barely walking any distance whatsoever and the only real activity I was doing was physical therapy and swimming. I continued with PT and continued to swim between 4 and 5 miles a week. After the six weeks I can’t say that I felt any different. I began to grow impatient with my progression and confused as to why I would have pain where there was no longer evidence of ON/ AVN. Intellectually I understood that I was getting better. I had good results from MRIs taken in February; Dr. Glueck’s ortyhopedic specialist had looked at my scans and said the ON/ AVN was no longer evident. Then there was the bone scan which showed the same thing. In my heart I didn’t think I was really getting better because of the pain.
However, looking back on the last eight months my improvements were so slight I barely noticed them. It wasn’t until a friend said something to me about me walking differently or I walked up a hill without pain that I realized things had begun to change. Over the last month something has greatly shifted inside of my body. I woke up about three weeks ago with no pain for the first time in nearly two years. Therefore, I decided to try to cut down on my tramadol again and now I’m down to only 50mg once a day. I started walking further to see if it effected my pain the next day, it didn’t. Each day over the last month I have walked gradually more and more.This past Saturday I walked 5 miles during the course of the day. Even a few months ago 5 miles would have been impossible for me to walk.
I was very hopeful when I was first diagnosed with ON/AVN and started this blog. Hope was the only thing that got me through the time I was in a wheelchair and my life had shrunk to such a point I didn’t recognize myself anymore. I look back on the last two years with disbelief and sadness. I’m not the same person I used to be. I am so grateful for my improvement now and wish I had believed in my body more this last year.
I can not be absolutely sure whether my ON/AVN was going to get better, regardless of my propensity to clot easily, but I believe that discovering and treating my blood clotting disorders has helped cure my ON/AVN. I have been on blood thinners for 15 months, starting with a 3 month course of enoxaparin sodium (Lovenox), and will continue to be on warfarin (Coumadin) for life. I continue to take L-Arginine, Folic acid and vitamins B12 and B6 everyday.
I wanted to share my good news with all of you and will continue to post on a more regular basis. I am humbled and touched by all your stories and hope that you all see improvement the way I have.