25 Feb

Blame

Edited by NY Times contributor Ben Austen

whose faultI am in the midst of reading the book “The Art of Happiness” written by Howard Cutler, detailing his conversations with the Dalai Lama. In it, Cutler ponders many different questions about life that he asks the Dalai Lama to give his thoughts on -these topics range from dealing with faith, to his thoughts on virtues such as compassion. Cutler uses his many patient interactions as the basis of the questions he poses. For example, he cites his interaction with a severely depressed patient and uses this experience as a springboard to question the Dalai Lama on his thoughts on the value of empathy. While the book highlights the Dalai Lama’s social intelligence, this was brought to the forefront by Cutler’s thought provoking and intelligent questions. While the Dalai Lama is clearly almost all-knowing, in my opinion there is no book without Cutler. For me, the most salient and relevant of the ideas posed in this book is the human inclination to find blame: “Often our normal tendency is to try and blame our problems on others, on external factors…It seems that whenever there are intense emotions involved, there tends to be a disparity between how things appear and how they really are.”[1]Reading this struck a chord with me. I found myself thinking about the role of blame in my ordeal. I agreed with him – if a horrible act is committed, like a rape or murder, our first thoughts are who did it, and did they catch him/her? My son has a classmate in school whose parents are divorced – the first question that sprung to my head was “Why? They are both so nice, was one of them adulterous?” My parents are both fanatics of the stock market, having the television tuned to CNBC for what seems like 24 hours a day. I’ve noticed that when the DOW or NASDAQ falls, CNBC’s anchors first look for someone or something to pin this decline on: economic indices were down or the market was reacting to a policy enacted by politicians. No matter what the stated cause is, the underlying principle is the same: blame. We, as a society, often look to blame something or someone instead of trying to be more constructive. For example, the disaster that hurricane Katrina left in New Orleans was blamed on the shortcomings of FEMA and President Bush; the universal healthcare website issues were decried as problems with the Obama Administration itself. As a physician, I have to admit that assigning blame or finding the cause is a theme across many medical school courses. We live in such a litigious society and physicians are often caught in the middle. This has forced many physicians to practice ‘defensive medicine’. This is when a test or procedure is performed in solely for the purpose of protecting the physician’s behind.[2] The U.S. is often criticized for its low ranking in healthcare (in part due to high medical care costs) -I am by no way saying the fix for our health care system is less defensive medicine but it would definitely help. Perhaps my interest in this topic was piqued because it was hammered into my head throughout my life in medicine.

— One in a Million —

During one of my visits to Chicago, Bill (my step-father) had a tennis lesson, at which time I met the Chinese mother of a child he was coaching. Even though the courts were located close to my parents’ residence, the walk seemed particularly long on that morning. Maybe it was because it was so chilly or because it was so early. The mother of Bill’s student noticed my awkward gait and slow speech in our conversation and asked my mother in Mandarin what had happened to me. My mom’s answer was very concise yet powerful.[3] “He was unlucky and had a brain tumor.” This brought me back to the topic of blame. Until then I had coughed up my condition to bad luck. But I found myself wondering, “Is there someone to blame?”

Coincidentally, this conversation occurred at the time I was reading the ‘Blame’ section in the “Art of Happiness.” It made me reflect on how I had been searching for someone to blame for my condition: At first I blamed myself for ignoring subtle clues of a possible medical issue. Before the discovery of the tumor I would often go for jogs around the block. I began to notice during these runs that my right leg was not as easy to lift as my left. I blamed my prior back problems and continued to be in denial of my symptoms. Similarly, I rarely ever had headaches, but during medical school after staying up all night, I experienced a shooting pain from behind my right ear to my temple. Unfortunately, I began suffering the same headaches during residency. They happened to coincide in time with when we installed a new air-conditioning unit, prompting me to have my blood checked for carbon monoxide poisoning. Again, I was trying to assign blame for my headaches, but was simultaneously searching for a reason to continue to be in denial about my condition. It turns out the installation of the air-conditioner was a red herring. It does not take 4 years of medical school to realize that my symptoms might have portended a more ominous condition.

I also blamed an MRI technician who told me that I could not have an MRI performed due to my vertigo that was brought on by lying flat. I was 18 at the time and sitting on the MRI table. Due to my vertigo (the reason I was having the study) I was told I could not have it done. Since I was so young I was not well read on the various presentations of vertigo or Benign Paroxysmal Vertigo (BPV). I did know, however, that it was usually a self-limiting disease[4] that sometimes followed a viral illness, and that the Epley Maneuver[5] was successful at resolving the symptoms about 75-80% of the time. During that period, its effect on my life was limited: with my tennis, I could not look up quickly for my serve or overheads, thus I had to make sure my service toss was neither too jerky, nor behind my head; hitting an overhead was not an issue as long as I had time to look at the ball.[6]  It also dictated the way I slept – I could not sleep while lying flat and had to sleep with at least two pillows under my head. At the urging of my mom, I saw an ENT specialist, who told me it was probably a condition called ‘Benign Paroxysmal Vertigo’ but wanted an MRI to be sure. Both the neurosurgeon and neurologist later told me that the vertigo symptoms I experienced were likely due to the tumor.  Thinking back, I probably would have handled the situation just as my ENT had. Many people are claustrophobic and cannot undergo an MRI without pharmacologic aids; typically we know this prior to ordering the study and can prescribe some proper medications before the MRI. There are some instances where this is either not mentioned or overlooked. Typically in such instances, the patient arrives for the MRI, attempts to complete it and cannot, and tells the technician that he/she cannot complete the study due to their symptoms. After the patient makes a big enough deal of it, the physician is called, and the proper medications are ordered. I made no such stink, leaving immediately after being told that I could not complete the MRI if I could not lie flat. My brother in-law often says, “The squeaky wheel gets the grease!” He says this when a patient who complains gets their way (He is an Emergency Department physician). In this case I suppose I wasn’t ‘squeaky’ enough. The clinicians who saw me later all questioned my diagnosis, as BPV typically resolves in three months. I remember a world renowned ophthalmologist saying openly to me “You know, Benign Paroxysmal Vertigo shouldn’t last this long.” I ignored everyone who told me that this might be something more serious, and I justified my denial by focusing on the fact that the vertigo was not getting worse.

MRI unitI even blamed my neurosurgeon, thinking that a sub-total resection (a less aggressive surgery where part of the tumor is purposely left in) could have averted all these after-effects.[7] The thought here is that with a sub-total resection there would be less manipulation of the area and vital structures such as the cerebellum and its surrounding nerves would be unaffected.

I then realized that I was falling into the trap of the blame game. My condition is NO ONE’S fault. I just happened to win the lottery for getting a congenital brain mass—because the mass and its location are so rare, I have had difficulty coming up with studies or articles that cite the chance of having this type of mass (with the ensuing symptoms), but according to my calculations, less than one in a million people will have this mass in their posterior fossa with subsequent Posterior Fossa Syndrome. I can either search for someone or something to blame this on, or just cough it up to luck (good or bad). After much thought, I’ve realized it really doesn’t matter whose fault it is. After a tragedy, our thoughts should not be, “Who’s to blame?” It ought to be, “How can this be prevented in the future? How can others avoid the same mishap?” Instead of looking for someone or something to blame, would it not be more productive to find the source of the problem? I admit to the same human tendencies, as my first reaction to the tumor was to find out whom or what was responsible; however, this experience and introspection has motivated me to resist this urge and instead to ponder more productive thoughts. As Cutler and the Dalai Lama point out, “We tend to look for one single cause, and then try to exonerate ourselves from responsibility.”[8] I now refuse to look backwards in an attempt to place blame on someone. This type of practice is a fruitless endeavor. I invite you to join me in this way of thinking.

© November 10, 2014 by Chris Chiou www.handicappeddoctor.com

Special Thank You to Ben Austen

Ben Austen

I would like to thank Ben Austen for taking the time to read my blog and contribute to it as an editor for this post. When my mother and stepfather Bill moved to Chicago they loved to recount Bill’s tennis experiences and talk about his various students. One of Bill’s hitting partners was a man they called Ben. My mom would tell me that Ben reminded her of me, citing his tall figure and modesty. When I began the blog I thought of Ben, as I would often read his pieces in the New York Times and Harper’s Magazine, and I very  much admired him as a writer. [9]  My mom suggested that Ben edit a piece for the blog. I thought this to be a great idea and immediately e-mailed him. Even amidst his hectic schedule, he responded without delay, stating that he would be happy to edit a post. Although unfortunate circumstances led to my current condition, luck brought Ben to me. Well, luck and Bill’s tennis prowess. In any case, I feel very grateful and honored to have his involvement and support.

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1  The Art of Happiness, Riverhead Books, New York, 2009 p158

2  For example, maybe a CAT Scan is ordered when the suspicion for something to be found on this scan is low.

3  She answered in English. I am able to understand some Mandarin and speak even less.

4  Meaning it usually resolves on its own, without intervention

5  This is a technique where the patient’s head is manipulated to fix the problem.

6  If for some reason my opponent hit a quick lob, surprising me, I’d have to it go over my head.

7  When I met with Dr. Janet Osuch her first question to me was, “Did the surgeon warn you that this might happen with your recovery?” He did warn me of all the typical surgical risks: infection, excessive blood loss, death, etc, and some complications more specific to my surgery such as cerebellar mutism (many times, 10% of patients who have a surgery in a similar location to mine, patients will emerge from the surgery with the inability to speak—cerebellar mutism), and he even warned me of the possibility of the presence of an intracranial shunt (essentially a tube from your brain that serves to release any excess pressure buildup in the head). Luckily neither occurred. But the answer to her question was “no” he did not mention the possibility of developing these specific symptoms.

8  i.d p158

9  For a great read visit http://www.nytimes.com/2013/06/02/magazine/how-chicagos-housing-crisis-ignited-a-new-form-of-activism.html?pagewanted=all

16 Feb

Introduction Dr. Chris Chiou

I have put much thought into what I wanted to write for this first piece for the Epidermoid Brain Tumor Society (EBTS). I came up with many ideas, but I thought it’d be best to first introduce myself to you all. Until now you may know me as the doctor who randomly comments on the EBTS Facebook page. My aim through writing this is to explain more deeply what brought me here.

Before I go on, however, none of this would be possible without an organization as wonderful as the EBTS. I only became a member a few months ago, but I have witnessed how much it has helped its members. No organization or company achieves any success without great people at the helm. And when speaking of great people behind successful organizations, I must mention both Fay Powell and Linda Frevert. Fay Powell (or ‘Fay’ as I call her) first contacted me late in 2014 after I told her of my experience, and even though I have yet to meet her, even her e-mails exude her warmth and kindness. Similarly, from the beginning of my involvement with this group, Linda Frevert has been amazingly supportive of my vision for this column.  Linda used to work as a nurse, and while she has been great for the EBTS, I know that her presence here means she is not at the bedside being a great nurse.

Now I will turn the tables and tell you a little about myself: I grew up in Omaha, Nebraska where I excelled in tennis and academics. This combination landed me in Cambridge, Massachusetts where I attended Harvard University. Besides playing tennis on their varsity team for four years, I also took all of the required ‘premedical’ courses (classes like Chemistry, Physics, and Biology) in preparation for medical school. I was once asked during a job interview, “What made you choose Harvard?” My response is that, besides some of the amazing people I was able to befriend there, I was lucky enough to cross paths with my wife, Fleur Broughton. It is often said that your spouse is your ‘better half.’ This without a doubt holds true when it comes to her. Even though I completed all the required coursework necessary to enter medical school, I desperately wanted to become a professional tennis player. Unfortunately while I had the will and drive to excel in the game, I lacked the talent, and after six months of traveling and playing I only managed to obtain a world ranking in doubles. I then returned to the States to prepare for the MCATS (a medical school admission test).

After studying and taking the test, timing dictated that I not apply for medical school for a year. It was during this year that I worked as a research coordinator for a Diabetes Center in Omaha. Near the end of my tenure there, both my wife and I were accepted into medical school. We also learned that my wife was pregnant with our first son. We were slated to start school in April with our son due in the end of December (2006). We foresaw what we thought were all the issues and hardships that came with having a newborn, compounded by being in medical school. What we didn’t realize was that he would actually make medical school easier emotionally, rather than harder (I cannot think of a worse situation than returning home after a long day of studying to an empty, quiet house). We completed our final two years of medical school in Saginaw, Michigan. When it came time for residency, my wife chose Family Medicine, while I decided upon Emergency Medicine (EM).

We were lucky to find a program that offered training in both specialties and that we also both liked. So in 2012 we moved to Lansing, Michigan to begin our residencies. After completing a year of EM training, I decided to make the switch to Family Medicine. Near the end of my second of three years I was elected chief resident of the Family Medicine program. My wife and I also learned that she was pregnant with our second son, who was due at the end of April.

In the third week of March, I awoke with slight double vision. I remember that I was working in the clinic at the time and that the double vision was not bad enough for me to stop. It gradually worsened until I pulled my Family Doctor aside and told him of my symptom. He immediately called a Neurologist who obtained an MRI of my brain. This is where my medical training served as a curse: I immediately began thinking of possible reasons for my double vision. In my head, the worst case scenario was a condition called Multiple Sclerosis: this would mean life-long medications as well as dealing with random relapses. The best-case scenario was a Complex Migraine which could explain the visual disturbances (even in the absence of headaches).

The MRI revealed a 4.5 cm mass in my posterior fossa, “most likely an epidermoid cyst.” (according to the Radiology report). After seeing a Neurosurgeon at the University of Michigan, he suggested an urgent surgery to remove the mass (for me, my worsening double vision precluded me from a wait and watch approach). I then underwent a 16 hour surgery to remove the mass. My stay included a one week stay in the Pediatric ICU (because my surgery was performed by a Pediatric Neurosurgeon) followed by a one month stay on the Rehabilitation Floor at my home hospital in Lansing. During my month on the Rehabilitation Floor, my second son Cormac Robert Chiou, was born.

Since being discharged home in May of 2013 my recovery process has been a long one, fraught with slow progression. In the beginning the gains were easier to see, but lately (as expected) the progress has been subtler. My main deficits have been my balance (I’ve likened it to constantly trying to stand on a balance board), along with my speech (the best analogy I have thought of is to liken my speech to having a handful of marbles in your mouth while speaking slowly). As I described to a close friend of mine, “I essentially went from fully functional to disabled overnight.”

While this tumor has stripped me of my ability to walk and talk normally, it has also allowed me to discover an activity I truly love, writing. In May of 2014 I began a blog detailing my experiences (www.handicappeddoctor.com) and near the end of 2014 I began corresponding with Fay and Linda. As I mentioned above, they were instrumental in bringing me into the EBTS family. After reading through my blog and making sure my writing was (at least) coherent they graciously invited me to write a weekly column for the website. Thus, even though I can curse this tumor for what it has taken from me, without it, I would not have discovered my love for writing.

I have since begun the long journey of completing my residency. This is my story, one which I hope continues. With this article I hope you better understand my perspective and background.

I hope to publish a weekly article for this column. Thank you for allowing me to be part of this journey with you.