Getting a Second, even Third Opinion, Is Important

This weekend I read an article in The New York Times about the psychology behind making bad choices; in regards to picking a doctor and ‘trusting’ an expert opinion. The writer referenced a strange illness she had that kept being misdiagnosed.

Apparently, one in five patients are misdiagnosed by doctors in the U.S. Based on my own experiences and the margin of error it is important to get a second or third opinion when it comes to your health. Given that osteonecrosis is not a well researched or understood disease it’s even more imperative that we find answers even if we have to see multiple physicians.

Why We Make Bad Decisions

NOREENA HERTZ
Published: October 19, 2013

LONDON — SIX years ago I was struck down with a mystery illness. My weight dropped by 30 pounds in three months. I experienced searing stomach pain, felt utterly exhausted and no matter how much I ate, I couldn’t gain an ounce.

I went from slim to thin to emaciated. The pain got worse, a white heat in my belly that made me double up unexpectedly in public and in private. Delivering on my academic and professional commitments became increasingly challenging.

It was terrifying. I did not know whether I had an illness that would kill me or stay with me for the rest of my life or whether what was wrong with me was something that could be cured if I could just find out what on earth it was.

Trying to find the answer, I saw doctors in London, New York, Minnesota and Chicago.

I was offered a vast range of potential diagnoses. Cancer was quickly and thankfully ruled out. But many other possibilities remained on the table, from autoimmune diseases to rare viruses to spinal conditions to debilitating neural illnesses.

Treatments suggested ranged from a five-hour, high-risk surgery to remove a portion of my stomach, to lumbar spine injections to numb nerve paths, to a prescription of antidepressants.

Faced with all these confusing and conflicting opinions, I had to work out which expert to trust, whom to believe and whose advice to follow. As an economist specializing in the global economy, international trade and debt, I have spent most of my career helping others make big decisions — prime ministers, presidents and chief executives — and so I’m all too aware of the risks and dangers of poor choices in the public as well as the private sphere. But up until then I hadn’t thought much about the process of decision making. So in between M.R.I.’s, CT scans and spinal taps, I dove into the academic literature on decision making. Not just in my field but also in neuroscience, psychology, sociology, information science, political science and history.

What did I learn?

Physicians do get things wrong, remarkably often. Studies have shown that up to one in five patients are misdiagnosed. In the United States and Canada it is estimated that 50,000 hospital deaths each year could have been prevented if the real cause of illness had been correctly identified.

Yet people are loath to challenge experts. In a 2009 experiment carried out at Emory University, a group of adults was asked to make a decision while contemplating an expert’s claims, in this case, a financial expert. A functional M.R.I. scanner gauged their brain activity as they did so. The results were extraordinary: when confronted with the expert, it was as if the independent decision-making parts of many subjects’ brains pretty much switched off. They simply ceded their power to decide to the expert.

If we are to control our own destinies, we have to switch our brains back on and come to our medical consultations with plenty of research done, able to use the relevant jargon. If we can’t do this ourselves we need to identify someone in our social or family network who can do so on our behalf.

Anxiety, stress and fear — emotions that are part and parcel of serious illness — can distort our choices. Stress makes us prone to tunnel vision, less likely to take in the information we need. Anxiety makes us more risk-averse than we would be regularly and more deferential.

We need to know how we are feeling. Mindfully acknowledging our feelings serves as an “emotional thermostat” that recalibrates our decision making. It’s not that we can’t be anxious, it’s that we need to acknowledge to ourselves that we are.

It is also crucial to ask probing questions not only of the experts but of ourselves. This is because we bring into our decision-making process flaws and errors of our own. All of us show bias when it comes to what information we take in. We typically focus on anything that agrees with the outcome we want.

We need to be aware of our natural born optimism, for that harms good decision making, too. The neuroscientist Tali Sharot conducted a study in which she asked volunteers what they believed the chances were of various unpleasant events’ occurring — events like being robbed or developing Parkinson’s disease. She then told them what the real chances of such an event happening actually were. What she discovered was fascinating. When the volunteers were given information that was better than they hoped or expected — say, for example, that the risk of complications in surgery was only 10 percent when they thought it was 30 percent — they adjusted closer to the new risk percentages presented. But if it was worse, they tended to ignore this new information.

This could explain why smokers often persist with smoking despite the overwhelming evidence that it’s bad for them. If their unconscious belief is that they won’t get lung cancer, for every warning from an antismoking campaigner, their brain is giving a lot more weight to that story of the 99-year-old lady who smokes 50 cigarettes a day but is still going strong.

We need to acknowledge our tendency to incorrectly process challenging news and actively push ourselves to hear the bad as well as the good. It felt great when I stumbled across information that implied I didn’t need any serious treatment at all. When we find data that supports our hopes we appear to get a dopamine rush similar to the one we get if we eat chocolate, have sex or fall in love. But it’s often information that challenges our existing opinions or wishful desires that yields the greatest insights. I was lucky that my boyfriend alerted me to my most dopamine-drugged moments. The dangerous allure of the information we want to hear is something we need to be more vigilant about, in the medical consulting room and beyond.

My own health story had a happy ending. I was finally given a diagnosis of a rare lymphatic vessel condition, and decided that surgery made sense. Not the five-hour surgical intervention that would have left me in bed recovering for more than three months, but a much less intrusive keyhole surgery with a quick recovery. I chose a surgeon who wasn’t overly confident. I’d learned in my research that the super-confident, doctor-as-god types did not always perform well. One study of radiologists, for example, reveals that those who perform poorly on diagnostic tests are also those most confident in their diagnostic prowess.

My surgery went well. The pain subsided, the pounds gradually came back on. I am now cured.

With brain switched on and eyes wide open, we can’t always guarantee a positive outcome when it comes to a medical decision, but we can at least stack the odds in our favor.

Noreena Hertz is a professor of economics at University College London and the author of “Eyes Wide Open: How to Make Smart Decisions in a Confusing World.”

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.

Embracing the Now

worry-quoteIt’s been several weeks since I last posted. It wasn’t that I had forgotten about my site, I just wanted to take a moment to step back and live in the now. I have spent all my life either dwelling on the past or worrying about the future. One of the valuable lessons I have learned due to having osteonecrosis is to live in the moment and embrace the good that I am experiencing now.

Mid February I had new MRIs performed. When my doctor went over the results with me he could still see evidence that my disease had not progressed. It has never reached my knee joints and there were patches on the MRI where bone has started to heal itself. At first I was very excited about the news. My husband and I celebrated that night by going to one of our favorite restaurants in our neighborhood. However, the next day I woke up with doubt in my mind, I spent all day driving myself crazy wondering if he misread the MRIs.

I was thinking why should I be so lucky. Can this really be true. At the moment I can only walk about 8 blocks with my cane and can stand for about 20 minutes without having pain and fatigue. I still take tramadol three times a day. I forget that a year ago at this time I couldn’t walk at all and standing was impossible. However, his prognosis seemed too good to be true. I ruined the moment for myself. I ruined the joy I had received from the good news. I talked to my therapist about my excessive worrying and she asked me if worrying had ever changed the outcome of anything and I said no. That’s when I decided I was going to step back for a few weeks from my site. It was good for me to take time off. I’ve been focusing on my physical therapy and the fact that I have been able to walk more and more. I’ve been enjoying my husband and our life together.

I was listening to a very sad story on the radio the other day. I started weeping and then hysterically crying, It was like a dam burst in side of me. A woman had a son born with a very rare genetic disease. From the age of 6 months her son went backwards in development and in the end died in February of this year at the age of four after having lived in hospice care for most of his life. She said people would often say to her,”I would die if I were you”, “I could never deal with having a child with a terminal illness”. The response in her mind was: no you wouldn’t die and secondly you would have to deal with it. There isn’t another option. She said people talked to her with pity and she knew deep down that she was just a reminder to them of how fragile life is. That everything can change in a moment. The moment a doctor gives you a diagnosis. The moment you look it up on-line and realize what the ramifications are. No one is invincible, no one. This woman’s story touched me not only because of the loss of her child but because of her strength.

I don’t know what the future holds, none of us do, but this is my reality at the moment and I’m going to try to embrace the life I am living now. No I’m not the same person I used to be. I have days when I feel extremely depressed and don’t think I can take this anymore, but if I really think about it, I still have so many good things in my life. You and I know how fragile life is, we have a perspective so many others will never have. We know how precious the now is.

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

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.