Category Archives: Osteonecrosis (Avascular Necrosis) Can Get Better

Good News to Share

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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.

Hyperbaric Treatment for Osteonecrosis of the Jaw

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If you have ONJ you will need to see a Maxillofacial Surgeon. One of the treatment options for ON of the Jaw is hyperbaric medicine. I do not have ON of the Jaw but when I was living with my parents in PA I went to their dentist who trained at Temple University in Philadelphia. The dentist said during training in dental school he had worked with many patients with ON of the Jaw. As part of the patient’s treatment plan they often recommended hyperbaric treatment for ONJ with successful results. If you have ON of the Jaw I think it’s something you should DEFINITELY look into.

Here is a recent paper released in July 2012 by the American Association of Oral and Maxillofacial Surgeons concerning Hyperbaric Oxygen treatment:

The email of one of the contributing doctors is listed below. It never hurts to contact someone!

What is the role of hyperbaric oxygen in the management of bisphosphonate-related osteonecrosis of the jaw: a randomized controlled trial of hyperbaric oxygen as an adjunct to surgery and antibiotics.

Freiberger JJ, Padilla-Burgos R, McGraw T, Suliman HB, Kraft KH, Stolp BW, Moon RE, Piantadosi CA.

Department of Anesthesiology, Center for Hyperbaric Medicine and Environmental Physiology, Duke University Medical Center, Durham, NC 27710, USA. john.freiberger@duke.edu

This study tested hyperbaric oxygen (HBO) as an adjunct to surgery and antibiotics in the treatment of bisphosphonate-related osteonecrosis of the jaw (ONJ) and evaluated its effects on gingival healing, pain, and quality of life.

MATERIALS AND METHODS:

The investigators implemented a randomized controlled trial and enrolled a sample composed of patients with ONJ, where the predictor variable was HBO administered at 2 atm twice a day for 40 treatments as an adjunct to conventional therapy of surgery and antibiotics versus conventional therapy alone. Over the next 24 months, oral lesion size and number, pain, and quality of life were assessed.

RESULTS:

Forty-six patients (mean age, 66 yrs; 57% women) contributed data to the trial. There were no statistically significant differences in the distribution of variables used to assess randomization success between the HBO and standard treatment groups. Seventeen of 25 HBO-treated patients (68%) improved versus 8 of 21 controls (38.1%; P = .043, χ(2) test). Mean time to improvement was 39.7 weeks (95% confidence interval [CI], 22.4 to 57.0 weeks) for HBO-treated patients versus 67.9 weeks (95 CI, 48.4 to 87.5 weeks) for controls (P = .03, log-rank test). However, complete gingival healing occurred in only 14 of 25 HBO-treated patients (52%) versus 7 of 21 controls (33.3%; P = .203, χ(2) test), and time to healing was 59 weeks (95% CI, 42.8% to 75.8%) for HBO-treated patients versus 70 weeks (95 CI, 52.2% to 88.36%) for controls (P = .32, log-rank test). Pain decreased faster for HBO-treated subjects (P < .01, linear regression). Quality-of-life scores for physical health (P = .002) and perceived health (P = .043) decreased at 6 months for control group but for not the HBO group.

CONCLUSIONS:

ONJ is multifactorial and no single treatment modality is likely to reverse it; however, it is treatable and even advanced presentations can improve with intensive multimodal therapy. Clinically, HBO appears to be a useful adjunct to ONJ treatment, particularly for more severe cases, although this study was underpowered to fully support this claim.

Embracing 2013!!

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It’s been 14 months since I was diagnosed with ON(AVN). Since going on the three month course of Lovenox over the summer my pain has decreased and I ‘seem’ to be getting better. I say seem because it’s not a consistent increasing line to improvement. I will have a few good pain weeks and then suddenly a bad pain week for no reason.  There seems to be no correlation between my activity and my pain during those weeks. The MRIs I had in August showed some revascularization to the area of dead bone in my femurs. I have more MRIs scheduled in February in hopes that it’s evident that more reossification has occurred.

When I feel defiant I push myself to do things even though it makes my pain worse. Sometimes in stead of feeling like 35 I feel like 85. I’m still unable to work and I fatigue extremely easily.  When going home for the holidays I was really hoping I would be able to make it through the airport with my walker but it was too far so I had to go in a wheelchair. At times this journey to getting better seems unending.

All along I’ve kept a really positive attitude, but sometimes I lose patience and feel overcome with frustration.  I’m proud that I can walk up the three flights of stairs to my apartment four times a day now and that I can walk about six blocks with just a cane.  However, sometimes at the end of the day, I worry that I’m not getting better, that I’ve just gotten used to chronic pain. I have to look back several months to remember there was a point when I couldn’t walk at all.

There are moments when I’m enjoying time with my friends when I forget about my ON(AVN). Then there are other times when I just can’t believe this happened to me.  I know you must all feel like that.

In many ways I have learned to live with this disease. But while all my friends are having babies, some even their second, I can see my biological clock ticking by knowing that my body right now couldn’t possibly handle carrying a baby. If it will ever be possible for me to be pregnant, I know I will be an older mother and I hadn’t planned on that. This is something that really upsets me and plagues my mind frequently.

I go to therapy and talk about my frustrations.  I can’t go on and on to my friends. Often because they don’t understand and also because I’m like a broken record. I’ve been trying to find the peace within myself to have patience, but as the months progress I have days when my patience has worn thin and I feel angry. I don’t want to feel this way.  I always said, and I think I even wrote on this site, that I didn’t want to be defined by my disease but before I do anything I always have to consider my ON(AVN) and how much my body can handle. My greatest battle at the moment is a mental one. I accept that this happened to me, but I don’t seem to accept the ramifications. I’m disappointed in myself for feeling this way.

Inspirational_quotesGoing forward I am going to put forth my best effort  to embrace the new year.  I hope each of you make progress and are able to come to grips with your disease from a mental point of view. Often the mental battle is almost as bad as the physical one. I wish all of you a Happy and Healthier 2013!!!!!

My Osteonecrosis (Avascular Necrosis) Has Gotten Better

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I didn’t think I would ever be able to say it, but my Osteonecrosis (Avascular Necrosis) has not only not progressed, but has actually regressed. It was so important that I found Dr. Glueck and had his treatment when I did. … Continue reading →