New AVN Website for People in the UK

As I’ve mentioned in past posts I am a member of several forums regarding blood clotting disorders and Osteonecrosis(Avascular Necrosis). Recently a group of ON (AVN) sufferers, who live in the U.K., started a site about AVN.

I have noticed a lot of people from the United Kingdom look at my site, so I thought you might find this site helpful. Eventually my long-term goal is to connect the worldwide ON (AVN) community, so I will continue to link off to sites like the one below.

Avascular Necrosis (AVN) UK Charity

AVN UK Charity

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Managing and Living with Chronic Pain

Managing the pain associated with Osteonecrosis (Avascular Necrosis) is just as important as managing the disease. Remember, you know better than anyone else what level of pain you can deal with while trying to live a fully functioning life.

I’ve been on pain killers for about 16 months now. For the first few months I was on Oxycontin 7.5mg three times a day. Then I started taking Tramadol during the day and instead only took Oxycontin at night.

One of the problems with being on drugs like Oxycontin or Tramadol is that several doctors scared me and implied I could become addicted to pain killers. I know that taking pain killers is a risk. I am so overly self-aware about the possible physical and mental dependency risks that they are on my mind every time I take a pill. I know why doctors try to frighten their patients. Many people do abuse Oxycontin. However, it is very easy for a doctor to judge you when they haven’t lived with a disease like ON(AVN) that causes chronic pain.

During the holiday season, about a month ago, I decided to do two stupid things. First of all I abruptly stopped taking pain killers at night. Secondly, I decided to spend a day with my husband doing what an average 35-year-old would be doing. I went downtown on public transport with just my cane. I walked around, looked at the lights, went shopping at several stores, and spent a lot of time standing. By the time my husband and I went to dinner I was in so much pain I had to rest my legs on his lap. After dinner I could barely walk out of the restaurant and we had to get a cab back home. At home I couldn’t walk to the bathroom to brush my teeth. By the next morning I woke up in so much pain I spent the day on the couch without being able to leave the apartment.

In retrospect I was probably punishing my body, punishing it for not allowing me to lead a ‘normal’ life. I was also listening to all those voices in my head that kept saying, “you’ve been on pain killers for 16 months isn’t is time you got off of them and accept the pain!”. I kept replaying conversations I had with doctors who scared me into thinking I was going to become a drug addict.

The problem is that the level of pain associated with my osteonecrosis isn’t an acceptable level of pain. It isn’t a level of pain that allows me to do any of the things I need to do to work towards getting better such as swimming, physical therapy or walking up the three flights of stairs to my apartment. Choosing to stop taking pain killers at night and pushing myself were very foolish actions. It took me over a week before I could get my pain under control again.

I would love nothing more than to wake up and live a full day without the aid of something to help me function. However, along with pain comes depression. Depression takes you to a place it’s hard to dig yourself out of. My mind becomes dark and I can’t get away from a cyclical obsessive pattern of thinking that I will never be able to live a full happy life again. Sometimes it makes me feel like I don’t want to live my life anymore. With ON(AVN) you are already grieving the loss of so many things, compounded with the pain, sometimes you feel like you are drowining in your disease. Osteonecrosis changes your life.

I went back to my primary care physician, we had a conversation about my pain and I decided to take Tramadol at night and to only take Oxycontin for break through pain. I was happy with this decision. I still have good pain days and bad pain days. Some days I deal with my grief better than other days, but one of the most important things I have noticed is how imperative it is to have good pain management.

Chronic Pain

Hyperbaric Treatment for Osteonecrosis of the Jaw

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, USAjohn.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!!

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!!!!!

How Many Orthopedic Doctors Does It Take Until One Cares About ON(AVN)

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If you are reading this site you are probably already very familiar with the feeling that no one cares about what’s wrong with you. Being frustrated comes along with the territory when you have a condition/disease that is not well … Continue reading

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

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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

The Different Stages of Osteonecrosis (Avascular Necrosis)

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I’ve noticed, from reading the statistics of my site, that a lot of people are trying to find out information about the different stages of osteonecrosis (avascular necrosis). Most stages are based on ON(AVN) of the hips, as those are … Continue reading