Good News to Share

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.

Enoxaparin Prevents Progression of Stages I and II in Primary Osteonecrosis of the Hip


Following is a summary of a 2005 study conducted by the Cholesterol Center, Jewish Hospital, Cincinnati, OH; and the Department of Orthopaedics, Cincinnati, Veterans Administration Hospital, Cincinnati, OH. Authors include: Charles J. Glueck, MD, Richard A. Freiberg, MD, Luann Sieve, … Continue reading

Genetic Thrombophilia Survey


There is a lady I know who is a member of a Facebook group for clotting disorders, and she is currently working on research concerning genetic clotting disorders. My Osteonecrosis/Avascular Necrosis was caused by clotting disorders. If you know you … Continue reading

Updated Blood Coagulation Work Up and Quest Codes from Dr. Glueck


Under clotting disorders I have now posted a copy of the new coagulation work up Dr. Glueck recommends for Osteonecrosis (Avascular Necrosis) patients. The codes on his work up are for LabCorp, I have posted a copy of the same … Continue reading

Spreading Awareness: Educating Ourselves and Each Other


I am a member of several Osteonecrosis (Avascular Necrosis), Factor V Leiden, MTHFR and Blood clotting support groups on yahoo and Facebook. I often write about my blog and post it in the different groups and hope that I can … Continue reading

The importance of being tested for mutations in the MTHFR gene


When there is a mutation in the MTHFR gene in an individual, along with another thrombophilic factor (ie. Factor V Leiden), the risk for thrombophilia is greatly increased. MTHFR stands for Methylenetetrahydrofolate reductase. Another term for MTHFR is NAD(P)H 5,10-methylenetetrahydrofolate. … Continue reading

Why ON (AVN) sufferers should have their homocysteine levels checked


Homocysteine is an amino acid produced by the body. Elevated homocysteine levels are linked to high concentrations of endothelial asymmetric dimethylarginine (ADMA); a chemical found in blood plasma.  ADMA interferes with the synthesization of Nitric Oxide from L-Arginine. Nitric Oxide is … Continue reading

Why being tested for the e(NOS) mutation is important


Yesterday I posted this under clotting disorders: What is the eNOS (Endothelial Nitric Oxide Synthase) gene T786C mutation When someone has a mutation in their eNOS gene it means that their body doesn’t produce an amino acid called L-Arginine (also … Continue reading

Grieving for the Life you Lost


A year ago, yesterday, my husband and I moved to San Francisco from New York for a fresh start.  We had had a bad two years personally and work wise and we saw our move to the West coast as … Continue reading

Idiopathic Osteonecrosis (Avascular Necrosis)


A lot of Osteonecrosis (Avascular Necrosis) patients are told their ON (AVN) is idiopathic. Meaning doctors can’t find a reason as to why that person developed ON (AVN). There is a reason for everything, it might not be known at … Continue reading