16 Nov


In reflecting on my experience with this tumor, I kept coming back to the idea that love played an integral role both in my diagnosis and recovery.  I realize I am not alone in knowing the importance of love.  Perhaps, it was a loved one who implored you to see a physician to obtain a diagnosis; maybe your loved one makes sure to attend all of your appointments; love and support can be as simple as holding your hand during difficult times.

Clipboard01For me, I remember first trying to leave my wife out of the situation, believing being tough meant being a lone ranger; in reality, there really is no such thing as a ‘lone ranger’, even the Lone Ranger needed help (from Tonto).  When I realized that the diagnosis was a grim one, I had to telephone my wife to have her by my side when I received the diagnosis.  When I was waking up from my anesthesia after my 16-hour surgery, the first person I apparently called for was my older sister.  When I was transferred to the ICU I remember holding my younger sister’s hand.  My mother spent every night with me in my month and a half long stay in the hospital.

Why do I tell you this?  Why is this relevant?  I am like anyone else, and when the chips were down and I was shoved into a corner, I instinctively called for loved ones.  Like I said, I am like everyone else; my nature to want loved ones by as I faced difficult situations is an instinct that we all share.  I then thought of the idea of love, and its role in my ordeal: I realized that love not only got me a diagnosis, but it has also helped me through my recovery.  The neurologist who diagnosed me reached his conclusion out of love; love for the art and skill of his profession.  I was promptly seen at the University of Michigan because those who loved me quickly called and found the top neurosurgeon in the area. Every card, every visit, which brightened my day was done out of love.

With health issues like epidermoid brain tumors, we all need loved ones to help us traverse this terrain.  Whether you are a ‘wait and watch’ patient or have upcoming surgery scheduled, the idea of love is how we get through this.  Even though the thought of love may immediately place your mind in the realm of the traditional sense of the word, love can come in many forms; yes love of a fellow human is the more ‘traditional’ thinking behind the emotion, but we can (and do) love more than just people—we love places, arts, and professions too.

I do not tell you this to tell you how lucky I am to have those around me who love me, but to remind you that every relationship you forge, every loved one is a person you should cherish.  It’s easy to be with a loved one during times of joy, but remember it is those same people that will also be there when you are down.

05 Oct


Today I had the pleasure of reading a post by a fellow EBTS member. The post discussed frustrations she had with her Neurosurgeon. This post generated much response, and garnered many replies. I must admit that my initial emotion was frustration…frustration with the minimization by this Neurosurgeon, frustration with the lack of the ability of this clinician to portray his thoughts, and empathy for her frustration in dealing with this condition. I will share her post with you below:

Errrrgh. . .another visit to my (neuro) Ophthalmologist yesterday. Third one in the last 6 months. Lovely man except for one thing. His need to assure me that I am very fortunate that I do not have a malignant tumor, that I shouldn’t really use the term tumor because that sounds more frightening than what it actually is, and that really all “it” is, is a growth and you can get growths anywhere! Then he says we are just keeping an eye on this because of the proximity of it to the brainstem. . .I am a watch and wait. My Epidermoid is around my brain stem causing many symptoms which I am treated for. Three surgeons have said they do not want to operate because the risks of permanent damage currently outweigh the symptoms I live with at this time. I am fine with that! But what I don’t get is why so many medical professionals downplay the Epidermoid like its nothing to fuss about and don’t call it a tumor. . .sorry just feeling frustrated.

My frustration turned to anger with subsequent reads; anger that this brain tumor is being treated this way. Now that I have had time to reflect with a cooler head about my reaction, I’ve come to realize that the emotion, frustration, plays a major role in dealings with this condition.

To truly understand the topic of frustration, it’s necessary first to give you my definition of it. In my eyes frustration is a deep seeded emotion; this is in contrast to an annoyance. These terms are sometimes mistakenly used interchangeably.
frustrationWhile someone taking the last parking space in front of you may be a frustrating experience, I think of it more of an annoyance than a frustration. To me, living with a brain tumor inside your head and having your trusted physician trivialize the condition is frustrating.

I would be remiss if I mentioned frustration and did not interject my experience with the emotion: having been on the path to becoming an Attending physician (in medicine, there is a hierarchy to becoming a physician: this hierarchy is ordered medical student, resident physician, and attending physician. I was diagnosed with this brain tumor near the end of my residency). Then having this ‘path’ interrupted by the diagnosis of an Epidermoid Brain Tumor, becoming physically disabled overnight (as I once explained to my friend) has put me through many frustrations. These frustrations varied from fumbling with paper straw covers, to being viewed as incompetent by patients due to my poor physical and verbal ability.

The key to dealing with these frustrations is to focus instead on the positive and not to dwell on the negative. In my case, if I were to contemplate all of the frustrating factors that accompany my condition, I would no doubt spiral into a crippling depression. In fact, many around me have said, “Chris, if I were in your shoes I would become depressed.”  A number of psychological and psychiatric professionals routinely screen me for depression, asking about my sleep and appetite and general mood. My wife, worried about my mental state, once told me, “If you keep bottling up your frustrations, there will come a time when it all boils over and spills out.”  My response was that I was not ‘bottling up’ or ‘ignoring’ these frustrations; I instead chose to focus on aspects of my condition that did not frustrate me, and actually brought me hope.

I am not a daily meditator, but you are taught to try and ‘clear your mind’ when you meditate. “What are you seeing when you close your eyes [to meditate]?” my father, an avid and expert meditator once asked me (at the time I was trying to leech off his knowledge with meditation). At first, my response was that I would try and picture a tranquil mountaintop. (I was impressed with my answer and thought it was a clever way to clear my mind). My father’s response surprised me, “Mountaintops are something, remember you’re trying to clear you mind. Try instead to imagine a clear blue sky.”  Furthermore, he taught me that thoughts may manifest as clouds coming through this sky. “Do not ignore these clouds,” he told me, “instead it’s important that you acknowledge them, but then let them pass.”  He went on, “as you become more adept at meditation, these clouds will appear less and less.”  What does this have to do with frustration? If you think of these frustrations as clouds that can only hurt you, then it’s important to acknowledge them but then to let them pass. In this case, yes there are people who minimize what you are going through, but remember that only you truly know what you are going through and that in the end, it does not matter what others say about your condition, what matters is how you let it affect you.

10 Aug


researchIn applying for medical school one of the most frequently asked questions on the interview trails is, “What do you want to do in medicine?” While the interviewers know that there are countless responses to this question including answers like: “I hope to become a surgeon,” or “I would like to work in an under-served community” the answer that is often sought by these interviewers is “I would like to be heavily involved in research.” These interviewers realize the importance of research. he interviewees have come to realize this and make it part of their standard response, even though in reality only a small percentage of physicians are actively involved in research.

I must admit that when I was asked this, I ‘towed the party line’ and would make sure to include ‘research’ in my response. I was not being completely dishonest with this answer, as the idea of taking part in research studies intrigued me and I did hope it to be part of my career in medicine. Where I may have been misleading though is the amount I wished to delve into research; if one’s career in medicine could be broken down into percentages, many of these interviewers would like research to be 30- 40% of one’s medical career where in reality for many, besides the required residency research project, research only encompasses 5- 10% of their career. This is only a generalization; thankfully, there are many physicians that devote most of their time to research.

But now that I’ve become older (and hopefully wiser) I have come to realize why the response of ‘research’ is so sought after; in medicine, research is what drives innovation and change. Without research we wouldn’t be nearly as knowledgeable as we are in topics like Heart Disease and Cancer. In fact, without research driving the progress of medicine, we would likely still be in the Dark Ages of medicine, with life expectancies in the 30s and preventable diseases like polio ravaging the population. Much of medicine is reactionary: if someone presents with a heart attack, steps are taken to identify the blockage and to relieve it; if a person were found to have cancer, medications (and sometimes radiotherapy) is given in hopes of hitting the cancerous cells. While both of these actions are vital to the care of these patients, they are both reactions.

Research takes a proactive approach – instead of fighting these diseases and conditions, isn’t it more rational to prevent them from occurring?  Perhaps my training in Family Medicine biases my opinion, but I’d like to believe that the thought that ‘an ounce of prevention is worth a pound of cure’ is a widely accepted axiom. In my eyes, research follows this approach, leading the cutting edge of medicine, preaching a proactive approach rather than reaction.

When I was asked to write for the Epidermoid Brain Tumor Society (EBTS) I immediately jumped at the idea. Even though I was not a member, I had followed the group ever since my diagnosis and surgery. Their leadership especially impressed me: both Linda Frevert and Fay Powell, besides being incredibly kind, were instrumental in my decision to write for them. They have been so supportive and positive from the beginning.

As I have become more involved with the EBTS, I have been able to witness EBTS’s involvement in research. Early research surveys involved members at the beginning of organization and more recently an international member conducted a study with voluntary EBTS member participants which will further the knowledge and awareness of epidermoid brain tumors and our struggles with them.The study will be public this fall 2015.

Perhaps writing for the EBTS is my own way of contributing to medical progress.

*** Although there are no current research studies for epidermoid brain tumors, EBTS strongly urges members to voluntarily have tissue saved from surgery for future research.

24 Jul


We all like to think of ourselves as someone who works alone, a lone ranger. In fact, the term ‘lone ranger’ comes from a popular television series, based on a novel, in the 1950’s. Now, calling someone a lone ranger is synonymous with deeming them as someone who needs little or no help; someone who is completely self-sufficient. What people often forget is that the Lone Ranger needed the help of Tonto. I tell you this because it highlights the fact that everyone needs help; no one gets where they are without it.

HelpIn my current condition, I’ve come to realize the importance of the aid of others. As physicians, we are often presented with cases that are beyond the scope of our skill set: at that time we ask for ‘help’ from consultants and specialists. No matter what branch of medicine, there are always times in which a consultation is needed: for example, if a 50 year-old woman with a history of urinary problems goes to her Urologist’s office for these urinary problems, but reveals that she has been coughing up significant amounts of blood; the Urologist would say, “You should be seen for that in the Emergency Department (ED).” The ED physician, after evaluating the patient, might enlist the expertise of a specialist, a Gastroenterologist. The Gastroenterologist might in turn, need the help of the patient’s Family Doctor to manage her high blood pressure or diabetes. My point in this convoluted scenario is that everyone in medicine needs help; the ‘lone ranger’ is an antiquated notion that is simply not realistic. This idea, I’ve realized, goes beyond the practice of medicine. We all need help.

Before my ordeal, I was always reluctant to ask for help. I aspired to be a ‘lone ranger’. In fact, I have mentioned before that I initially began my training in the specialty of Emergency Medicine (EM). I then switched to Family Medicine after one year of EM training. I have many reasons for this switch, but one of the main reasons is that when I entered into Emergency Medicine, I was hoping to be in a specialty of medicine that required little assistance from others. After being in the ED I realized this wasn’t the case: actually most cases required the aid of others. This trait of mine became magnified immediately after my surgery, as I hated the idea of asking for help. Even asking my assigned nurse for medications for pain was difficult for me. After my discharge I continued to be reluctant to ask for help. Not only did I still have my lone ranger mentality, but also I viewed the acceptance of help as an exposure of my weakness. I feared that accepting help put my disabilities on display.

Thankfully, time has shown me the error of my ways: I now have no issue in asking for help. This can be as simple as allowing someone to hold a door for me (where every instinct in my body tells me to open doors for others) or as complex as accepting help in returning to work. It is called ‘help’ for a reason; this act is in service of another.

The scale of this might differ: a person helping someone cross the street might ‘help’ on a smaller scale than Martin Luther King, Jr. uniting a whole race. To me, help is help, whether the act is a big or small one. In this example, I see both as reaching in the same areas of their heart to help regardless of the scale, I’ve realized that no one gets where they are without some help. All people who achieve success on any level have great people behind them. The help I ask for might seem minor, but my acceptance of help in these instances signifies my willingness for assistance in other grander issues.

We all need help to achieve our goals. Great people accomplish great things only with the help of those around them. Have you accepted the fact that you sometimes need help?

31 May

Interview With a Neurosurgeon

Interview with a surgeonThis past month I had the pleasure of corresponding with a very prominent neurosurgeon. Dr. Cormac Maher specializes in skull base tumors, often the location for Epidermoid Tumors. In fact, in full disclosure, he is the Neurosurgeon who operated on me. To be exact he is a Pediatric Neurosurgeon, but when I saw one of the head adult Neurosurgeons at the University of Michigan, he told me (regarding my tumor) “Chris, I am going to have one of my colleagues, Dr. Maher a Pediatric Neurosurgeon, see you. To be honest, he is much more experienced than I in this location. If it were my son I’d want him to see Dr. Maher.”

 Neurosurgery is an amazing field; one that not only requires exact precision, but also one that demands an incredible amount of time and devotion. Knowing this, I was very grateful that Dr. Maher would take time out of his busy schedule to answer my questions. This is what I asked him:

CC: First off, Dr. Maher, I wanted to thank you for taking the time out of your day to answer these questions.

Are there locations that are more common for you to see? 

CM: The most common location that I see are lesions located just to the side of the brainstem, wedged in the “CPA” or cerebellopontine angle.

CC:  For patients whom which the wait and watch alternative is taken, are there specific intervals with which you monitor the tumors? 

CM:  I think the proper follow-up interval will depend on patient-specific factors such as the age of the patient, the presence of any symptoms, and the size and location of the epidermoid. I would follow larger lesions with much more frequent scanning than tiny lesions. I would also follow with more frequent scanning if I thought that any neurological structures such as cranial nerves would be in jeopardy if the lesion grew. Most importantly, I would monitor very closely if the lesion was threatening to obstruct the flow of cerebrospinal fluid pathways, possibly resulting in hydrocephalus. Of course, if a lesion is very worrisome – either because of its location, size, or symptoms – we tend to offer surgery as a first line of treatment.

CC:  What new surgical approaches you advocate?

CM:  It really depends where the lesion is located. For some intraventricular lesions or lesions at the skull base, endoscopic removal has become more accepted as a first choice therapy. This has the advantage of a more minimal approach and a shorter hospital stay. For most epidermoid lesions, their location makes them less than ideal candidates for this sort of resection. If a more traditional craniotomy is required, microsurgical tools are improving all the time. Probably the most important advancement in the last 10 years with respect to any brain lesion resection surgery has been the intraoperative MRI scanner. This tool allows us to examine the brain for any residual lesional tissue even while the operation is still in progress. The identification of residual during the operation increases the likelihood that we can achieve a total removal.

CC:  What do you warn patients regarding possible adverse effects of the surgery?

CM:  The size and location of the lesion will determine the amount and type of risk involved. The most dangerous lesions are usually located near the brain-stem or cranial nerves. Larger tumors are generally more difficult to remove than smaller ones. I try to tailor my preoperative risk discussion to the patient’s particular situation as best as possible.

CC:  With regards to post-op complications, we have had many members that worry about meningitis and/or infections of the wound, are there steps they can take to prevent these?

CM:  Most surgical infections are the result of bacterial organisms that are introduced at the time of surgery. All surgeons administer antibiotics just before they start the operation and that is generally thought to be helpful. Obviously, it is important to maintain a sterile environment during the operation. Once the operation is over, unfortunately, there is very little to be done that can decrease the odds of infection beyond common sense tactics such as keeping the wound clean. Some surgeons (including me) will place patients on antibiotics for a short time after surgery but this has never been proven to be helpful at prevention of infection – even after several large studies have attempted to study the practice. 

CC: Thank you again Dr. Maher for both your time and your expertise.

07 May


One of the aspects of my work that always brightens my day is being able to see children. The only downside of having encounters with children is that they are often in distress (thus the reason for their visit). But many visits are ‘well child’ visits: visits where developmental milestones are assessed and vaccinations are given. These visits are typically filled with a smiling child’s face (that is until ‘the shots’ are given).

These highs come with the occasional low; in fact, since my return, I have only come close to crying once while in a patient room. This came after a six year-old girl told us that her mother’s boyfriend had sexually abused her. I hate seeing a child in any sort of distress- my heart sinks whenever I enter the room of a pediatric patient who is clearly sick.

Why do they give us so much joy? The scientific answer is that we’re designed to feel that way. It benefits our survival to think of children as precious. In evolutionary terms, loving them as we do causes us to protect them from any harm, leading to a propagation of us as a species. My superficial answer is that I see my sons (aged 8 and 2) in every pediatric patient. However, not only did I feel this way before the birth of my children, there are also countless others who do not or will not have children; thus my argument of seeing our children in others is debunked.

When I reflect on it more deeply, I realize it’s the honesty of children that I truly treasure. Kids will tell you what is on their mind; call it naiveté, but unlike us adults, they have yet to go through the long process of becoming an adult and being taught to censor many of their thoughts or words. This honesty can also be thought of as pureness. In philosophy there is a never-ending debate over our inherent values: one side believes us to be virtuous at the core, claiming that we are all born with inherent ‘good’ values. The opposite school of thought labels us as inherently ‘bad’; according to this theory we are all born with these hurtful tendencies. Personally, I subscribe to the former theory. I have never come across a trait that I disliked that couldn’t be traced back to a learned behavior. For example, I’ve yet to come across a racist whose beliefs spontaneously form. I can always trace their misguided beliefs to some experience that led them down this path. But regardless of where you stand on this debate, you’d be hard-pressed to find someone to argue against the pureness of a child’s mind. Whether or not their values are virtuous, they are always honest in what they say.

That brings me to the topic of today’s column. When Linda Frevert told me that many of the EBTS members are parents of children who have been diagnosed with Epidermoid Tumors, my heart sank: deep inside I knew that children were afflicted with this condition just as adults were, but I had been somewhat in denial about this reality. The thought of a child having to endure a surgery of the brain or even the diagnosis of an Epidermoid Tumor is hard to fathom. The good news of diagnosis at a young age is that children’s bodies are incredibly resilient and fantastic at recovery. I’m sure there is a plausible scientific explanation for this, but the conclusion is always the same: kids bounce back from injuries better than adults. I liken it to a sand castle. If a piece of your sand castle is taken (or broken) while you are building it, who cares? You can just get more sand and rebuild the affected area. But, if your sand castle is already completely built and your sibling decides to break off a chunk of it, it can prove very tough to rebuild.

But my despair turns to hope when hearing of children afflicted with this condition. Yes on the one hand it is horrible to think of a child with an Epidermoid Tumor. On the other hand, their diagnosis comes now when they are best equipped to recover. I often wonder how my recovery process would be different if I had been diagnosed at a young age. Thus, this is dedicated to any parents who have to endure this diagnosis in their child: just remember that there is nothing you could have done to prevent this- it is postulated that the tumor begins its formation in the womb. Also know that diagnosis now is better than later as your child’s body is equipped to recover from this and your child will heal. Sand castles broken while building it can be rebuilt, sometimes better than before.

I am a big fan of stand-up comedy, and Louis CK does a hilarious bit on children learning to lie: https://www.youtube.com/watch?v=msy__Gujljo

29 Apr


I graduated from college with a degree in Economics. This is where I came across the term, ‘externalities’. The official meaning of this is the cost or benefit a third party receives from an activity. For example, a negative externality of alcohol use is increased motor vehicle collisions as a result of impaired driving. For the purposes of this post, I see it as an unintended, uncontrollable consequence.

As I’ve mentioned I recently began shadowing physicians in the clinic, beginning my long journey to managing patients again. I usually follow with an Attending Physician, a physician that has already completed residency, but sometimes I will follow a senior level resident. Last week, I had the privilege of being matched up with a resident by the name of Abigail Urish (or Abbie). I met Abbie when she was an eager, bright-eyed intern. She is now a third year resident, elected chief, and ready to embark on her own in only a few short months. I have always admired her, not only for her obvious high intelligence and willingness to learn, but also for her optimistic disposition, finding the light in the dimmest of situations.

Abbie & KenWe entered the room for a patient encounter together. There are times when the moment you enter the patient’s room, you can sense that something’s amiss. Perhaps it is the look in the patient’s eyes, or maybe it is from the way they are sitting, or possibly a combination of factors, but when we entered her room both Abbie and I could sense her depressed mood.

I know I have written on the topic of depression several times before, but what Abbie told her was very poignant and struck a chord with me. During the encounter, the patient told us of several of the hardships she was enduring (i.e. loss of custody, a dispute with her child). Abbie was then faced with the daunting task of describing depression in less than the 15 minutes allotted for each visit. Abbie told her that, “Depression is a hard entity to treat, because unlike so much else in medicine, with Depression there are no blood tests or x-rays we can obtain to aid us in diagnosis. Also, response to treatment is so variable and really depends on the individual patient. My thought is that Depression is very much related to how we react or internalize external situations. There are some who face incredible hardships, yet are able to see the silver lining in any situation. You just told me about some very hard events in your life, but you also mentioned some bright happenings too. Unfortunately, someone who suffers from Depression zeroes in on the bad or tough situations. Just to give you an example, if someone takes a test with 100 questions and gets 99 out of 100 right, a depressed person will only remember the one question they missed as opposed to the 99 they got correct. The medications and therapies we prescribe can only serve to help with this outlook. We can’t control much of what happens to us, but what we can change is how we react.”

The more I thought about it, the more I realized how right Abbie was. We as a society are obsessed with trying to control or modify situations that are thought of as immutable. Examples of this are littered throughout medicine: risk factors for developing a disease are generally divided into modifiable and non-modifiable risks. The idea of attempting to alter these modifiable risk factors is drilled into our heads from the first day of medical school. I am by no means saying that these external, changeable factors should be ignored. For example, stopping someone’s smoking habit can have repercussions throughout their life. But I believe that too much of our focus is placed on factors beyond our control. All of us receive a ‘raw deal’ at some point in our lives, and while we cannot control many of these situations, we can change how we face these challenges.

02 Apr


partnershipWhen I was applying for medical school, the interviewers often posed the same question: Do you see the patient-physician relationship as more akin to a parent-child dynamic or to a partnership? While it was always clear which answer the interviewer sought to hear, I have come to realize the importance of this idea.

Medicine, as old as it is, would cease to function if it were treated as anything but a partnership. Yes, the management opinions of the clinicians are rooted in years of medical training and knowledge, but in the end the plan of action only comes to fruition after deliberation from both parties.

One of the perks of this job is that I’m often consulted in cases where my medical knowledge is needed. Several months ago I was introduced to ‘Erica’.[1]  Erica had undergone surgery to remove an Epidermoid Tumor. Unfortunately, she was experiencing several post-operative symptoms, one of which was fever with headache.[2]  In medicine, there are certain symptoms called ‘red flags’; these are symptoms that clue the clinician in that something worse is going on (for example, if someone were to tell you that they have chest pain that feels like ‘tearing into the back’; this is a red flag for a condition where your aorta is literally splitting). In Erica’s case, fever with headache following brain surgery was a red flag for meningitis (an infection of the central nervous system). As was prudent, she promptly called her Neurosurgeon who advised that she go to the Emergency Department (ED). She went to the ED where the physician deemed that she did not have an infection, and subsequently discharged her home with instructions to see her primary care physician (PCP) in the coming days. Her PCP obtained some further testing and suggested she return after several weeks. Here is the problem (and why I was consulted): she was still having fever with headache. Was the diagnosis of meningitis missed by her physicians?  She questioned the knowledge and decisions of her clinicians so much so, that she even considered returning to the ED at a time that she knew that her previous ED physician wouldn’t be there. She also considered seeing a different PCP for treatment. I was asked what her next step should be. My response (via e-mail) is what follows:

Hi Erica!

These are all legitimate concerns that I’m glad you brought up.

The bottom line is this: I agree that accepting care without question is not the optimal way to practice or receive medicine. It is a partnership where each party has at least some trust in the other party. If this balance is shifted too far in either direction the result is a negative outcome for the patient. Why is this relevant to you?  In your case we should believe, to a certain extent, that your physicians are acting in your best interest. This is by no means a blind approval of care, but in order for this relationship to persevere a certain level of trust must be maintained. If you do not trust your caregivers then you should sever ties with each of them.

We each have roles in this situation: both Marcie[3] and I are to serve as objective observers for your sake, and interject with our clinical knowledge when we see fit. I tend to look at situations as a group of alternatives: for you this is what I see: option 1. Continue the current path, meaning doing nothing, option 2. Stop seeing your current physicians and find new caregivers, perhaps getting a different outcome. And 3. Openly question your current path to your caregivers in hopes of forging a new one. Personally I would still go with option 3 but one of the great aspects of medicine is that you have the choice. 



Medicine is a partnership, a partnership with the goal of achieving optimal health for the patient. When this partnership struggles mistakes occur. This ‘struggle’ could be (and usually is) the result of poor communication from one or both parties. If, for example, you either do not trust or blindly follow the opinions of your physician, then this ceases to be a partnership and you will ultimately be dissatisfied with your care. If the clinician does not trust the patient in any way, or he/she does not effectively communicate the rationale behind his/her decisions, then misjudgments inevitably ensue.

Even though this began in my life as a rehearsed interview answer, it means so much more to me personally, and I hope for you too.

[1] For the purposes of this article, I will conceal her true name.

[2] For anyone involved in medicine, alarm bells screaming ‘meningitis!’ are ringing.

[3] ‘Marcie’ is a neurosurgery Physician’s Assistant that was also consulted on the case

25 Mar

Brain Injury Month

March is Brain Injury month, and I wanted to devote an article to this topic.

Brain injury is a broad topic that includes everything from concussions to gunshot wounds.  For this article I will discuss the topic of traumatic brain injuries (TBI).  Even though TBIs represent a subset of brain injuries, the causes are diverse, ranging from falls to anoxic brain damage (lack of oxygen to the brain resulting in brain cell death).  In 2010 the CDC released a study that looked at data from 2002 – 2006.[1]  In the study, among other findings, they concluded that the rate of death among all Emergency Department (ED) visits for TBI was a shocking 3.0%.  Meaning that of the 1.7 million visits to the ED per year, 52,000 resulted in deaths from TBI.  This number however, while unbelievable, does not portray those of us who do not die yet are left with the sequelae of brain cell death.  In fact, because of these unwanted effects, TBIs have been called “the silent epidemic”.[2]

Let me first define TBI: TBI occurs as a result of any external force that causes any trauma to the brain.  The most popular form of TBI is from concussion (the one you hear about on the news or Sportscenter), which occurs when someone strikes their head causing a bruising of the brain.  The results vary widely, from a brief headache to death.  However, for many of us TBI does not occur on a field.  For me, it took place in an Operating Room.  The CDC estimates that over 50% of all TBIs are the result of a fall.[3]

While the range of symptoms that TBI can cause is vast, the effects it can have on our lives is even more varied including little to no changes to our lives to permanent disability.  The National Institute of Neurological Disorders divide TBIs and their consequences into mild, moderate, or severe “depending on the extent of damage to the brain.”[4]

To us, these are merely numbers and definitions that serve to help us understand this entity, however the real ‘meat’ of this topic is rooted in recovery.  Yes, we now know that TBIs cause over 50,000 deaths each year and that its effects are far-reaching, but those are all events that have already occurred and are beyond our control; it is more important to know what we can do to help us recover.  The human body and the brain are amazingly resilient; thus part of the recovery process simply requires the ‘tincture of time’.  This is not a short process, as my physician told me in the hospital, “Chris, remember this isn’t a sprint, it’s a marathon.”  I often remember this when I find myself wishing my recovery process were quicker.

When I was discharged from the hospital last year, I was given a prescription for Speech, Occupational, and Physical therapy.  These are all modalities of rehabilitation that focus on different areas of recovery: Speech Therapy is self-explanatory, with the goal of improving speech deficits.  Occupational Therapy aims at helping with daily and work skills.  Physical Therapy attempts to aid patients through improvements to mobility and function.  Throughout this process I have been praised for my hard work.  While these comments are extremely kind, I assumed that everyone works hard and ‘gives 100%’ when rehabilitating in therapy.  However, I feel that a satisfying recovery requires two virtues: patience and determination.  Without patience, the thought of a long arduous journey to recovery would be daunting.  At times you will feel like Sisyphus pushing that boulder up the hill only to see it roll back down.[5]  Without patience you might not see that you are making progress, and that your hard work, your suffering does have a purpose.  This patience though will be useless without determination as well.  It is determination that pushes you to complete that extra exercise or begin that extra vocal activity.  Otherwise, while you may partake in those endeavors, without determination you’d simply be going through the motions and lack the true effort.

In medical brain tumor injury monthschool we are introduced to the incredible story of Phineas Gage.  On September 13 of 1848, Gage, working as a foreman for a railroad, underwent a horrific accident that resulted in an iron rod piercing through his left eye socket into his brain and out through his skull.  His story is an incredible one because not only did Gage live through this incident, but he became a productive member of society afterwards.[6]  In considering brain injuries and their effects, we should think about the story of Gage.  He reminds us of the power of the mind and its ability to overcome the greatest challenges.

[1] http://www.cdc.gov/traumaticbraininjury/pdf/blue_book.pdf

[2] Id.

[3] Id.

[4] http://www.ninds.nih.gov/disorders/tbi/tbi_htr.pdf

[5] http://www.mythweb.com/encyc/entries/sisyphus.html

[6] http://www.smithsonianmag.com/history/phineas-gage-neurosciences-most-famous-patient-11390067/?no-ist

13 Mar

The Science of Epidermoid Tumors

This week I would like to discuss the clinical science of Epidermoid Brain Tumors. I hope to delve into what is known about this condition, however, it should by no means serve as a reference guide to these tumors. I will format this article like many medical publications format their data. I feel this format best highlights the salient points and is most appropriate for a discussion on the scientific background of epidermoid tumors.  You can blame my many years of reading solely medical literature but I have formatted this article like a medical article with sections like: Definition, Epidemiology, Symptoms, Diagnosis, Special Cases, and Treatment.

I am typically very inquisitive by nature; if I see or read about something new to me, I’ll immediately try to gather as much information on the subject that I can.  However, when I was diagnosed with a ‘probable Epidermoid Tumor’[1], I deliberately did not research the topic. I wanted to know as little as possible before undergoing surgery – maybe I was afraid of what I’d come across, or maybe I was simply too preoccupied with family and friends to have the time to delve into the condition, but regardless of the reason for my purposeful ignorance, the end result was the same: a confirmed diagnosis of an Epidermoid Tumor and a forever changed life.

It was not until several weeks ago that I finally performed a formal ‘literature search’ of Epidermoid Tumors.  The search returned over 200 articles of medical literature detailing the condition.  However, this number is misleading as many of these articles were of little use to me (i.e.: case reports[2], studies of Epidermoid Tumors on animals, rare gene mutations surrounding the tumor).  While each and every publication has its significance, my aim to provide you with an overview of the tumor did not require these details.  The important take-away of this search is that it revealed something I had long suspected: even though this tumor has been around for a very (very) long time (see this amazing article at http://anthropology.net/2009/06/15/first-neanderthal-fossil-dredged-from-north-sea/), little is still known about the tumor.  Allow me to attempt to summarize what I found:

–   –   –   Definition  –   –   –   

Epidermoid Tumors are benign cysts that typically develop in either the brain (intracranial) or in the spine.[3]  It is a congenital tumor, meaning it is present at birth.  It is postulated that the tumor begins its growth between the 3rd and 5th weeks of life (in the womb).[4]  The tumor arises from an abnormal growth of epithelial cells (a type of animal tissue) and is sometimes called ‘pearly tumors’ because of its white, curdy appearance.[5]

–   –   –   Epidemiology  –   –   –   

This section centers around demographics of the tumor.  It is estimated that 0.3 – 1.8% of all intracranial brain tumors are Epidermoids.[6]  In some studies, albeit small ones, there is a slight female preponderance.[7]  The tumor seems to like the back of the skull, with an estimated 37.3% of these tumors located in the back part of the brain.[8]  What I’ve given you above are numbers; figures that reflect statistics found in studies, take these numbers with a grain of salt as really this tumor, although rare, can effect anyone, anywhere.

–   –   –   Symptoms  –   –   –   

Describing the symptoms patients may experience as a result of this tumor is tough because the tumor can have such a wide array of effects.  The most common symptom described is headache.[9]  In fact, a published case study describes a patient with specific headache symptoms (called Trigeminal Neuralgia) who actually was suffering from an Epidermoid Tumor.[10]  The reason I tell you that these symptoms are hard to describe is because symptoms really depend on where the tumor is located.  These can range from conditions as severe as seizures to something as benign as taste difficulties.  There are many nerves (some called cranial nerves) that pass through this area making themselves vulnerable to being pushed on by the tumor.  For me, I awoke one morning with double vision.  This became worse until I finally told my Family Doctor about it, who obtained an MRI.

The bottom line is that because the symptoms are so varied, the diagnosis cannot be made solely on the basis of symptoms and physician evaluation.  By no means does everyone suffering from a headache have an Epidermoid Tumor, but this is when the clinician must pick up on other clues to facilitate further investigation or imaging, such as an MRI or neurological referral.  This is an ideal segue to the next section, ‘Diagnosis.’

–   –   –   Diagnosis   –   –   –  

As I alluded to above, because symptoms are so varied, imaging is needed to aid in the diagnosis.  Unfortunately, this tumor does not show up on regular x-rays.  (In the past, the only way for it to be seen on x-ray is when the tumor grew enough to erode the skull bone).

In medicine, it is generally accepted that Magnetic Resonance Imaging (MRI) is superior to Computed Tomography (CT) when examining masses.  There are reasons why CT is used over MRI in many instances: CTs are more sensitive at picking up bleeding in the brain, can be performed quicker, and cheaper, and any metal in your body (i.e. a pacemaker) precludes you from having an MRI done.  Epidermoid Tumors can be seen on CT, however, MRI is still a more accurate means of visualizing the mass.  It pains me to say this, but there are some health insurances that require the patient to get regular x-rays before they will cover an MRI.

While MRI can point you (and your clinician) towards the direction of an Epidermoid Tumor, actually looking at the tumor under a microscope is needed for a diagnosis.  The medical school adage, ‘tissue is the issue’ (for some reason doctors like phrases that rhyme) holds true here.  As I was told by my neurosurgeon before my surgery, “I can tell you that it’s probably an Epidermoid Tumor based on the MRI, but there is no way for me to be sure without actually going in, taking it out, and having a pathologist look at it.”

–   –   –   Treatment   –   –   –  

Treatment for these tumors is typically surgical.  This comes with a caveat: brain surgery is an incredibly invasive surgery, thus if it can be avoided you and your surgeon will elect against it.  For this group of patients, a wait and watch approach is taken.  The tumor is closely monitored by MRI for signs of growth.  The interval for this surveillance is typically yearly with variations depending on clinician comfort and overall gestalt.  But symptoms always trump the MRI.  For example, if you began developing debilitating headaches as a result of the tumor, your surgeon will advise you to have surgery to remove the mass, regardless of its MRI appearance.

Unfortunately, there are no special medications that can shrink the tumor.  Any medication given is typically to aid with symptoms, these do not serve the purpose of treating the tumor itself.

–   –   –   Special Cases   –   –   –  

There are a few special cases to note:

First off, what is to be done for Epidermoids in pregnancy?  Generally speaking, for both the health of the mother and fetus, surgery is avoided in child bearing women.  However, there are some instances where surgery cannot wait and be put off until after delivery, in these extreme cases surgery is undertaken.  Studies have shown good success in these cases, as the surgery does not involve the abdominal cavity.[11]

Also, I mentioned above that this is a tumor of epithelial cells (a type of tissue) and because of this transformation of this tumor from a benign to a malignant one is an occurrence that must be mentioned.[12]  This is an incredibly rare event (on the order of hundredths of a percent), but you should know that the tumor can potentially become a Squamous Cell Carcinoma (a big term for cancer).[13]

–   –   –   Questions to Ask  –   –   –   

When faced with this diagnosis, it is important to ask pertinent questions.  It can be a difficult to do at the time. I remember being told there was a large mass in my brain, but then after that everything else was a blur.  I know that I was so shocked with the news that I did not ask any questions, let alone pertinent ones.  This is usually a diagnosis that comes out of nowhere, thus if you need time to compute and comprehend it, then ask and inquire at a later time.  Remember, this is your health and body.  It is also a slow growing tumor, so time is your ally.  For some, like myself, time is needed to come to grips with what is going on.  Go home, research the tumor, and either return to the Neurosurgeon’s office or telephone them with your questions.  Here are some of the questions I wished I would have asked:

The first decision point made in the Neurosurgeon’s mind is whether or not surgery is needed.  Thus I will divide the questions to ask based on the decision to undergo or forgo surgery:

Surgery questions:

  • What are the risks of surgery? (Your surgeon will inevitably give you the generic risks of surgery i.e. infection, blood loss, death; but are there risks specific to this surgery? My surgeon warned me of possible ensuing Cerebellar Mutism, a rare complication of surgery in this area of the brain, where the patient is unable to speak for several months after the surgery).
  • What is your experience in this area? Even though the tumor is rare, it is possible to find surgeons with more (or less) experience in the tumor’s location.
  • What should I expect with the recovery process? Will I be in an Intensive Care Unit following the surgery?  How long should I expect to be absent from work?
  • What kind of surgical approach will you be taking? (The number of new surgical approaches changes by the minute, thus it’s important to know which one your Neurosurgeon will be taking).
  • I’ve read that this tumor is often contained in a capsule. If this tumor is in a capsule that’s tightly adhered to the surrounding area, how aggressive in its removal will you be?
  • After the surgery, how often will I be monitored for recurrence?

Wait and Watch Questions:

  • How often will you be monitoring this tumor?
  • Based on this tumor’s location, what symptoms should I look out for?
  • Will the monitoring be done by you? (Or a Family Physician or Neurologist)
  • What is your threshold to proceed to surgery?
  • In your experience, what is the likelihood that my tumor will ultimately require surgery?

I understand that this diagnosis usually comes in the form of a whirlwind, and that my telling you to compose yourself to think about the diagnosis and its implications is easy in hindsight.  But realize that you have time on your side.  Remember this is your health, and you are your own best advocate.

[1] An image, like an MRI, cannot give you a definite diagnosis.  It can only (at best) strongly suggest a diagnosis.

[2] A Case Report is an article about a single case.

[3] Epidermoid, Dermoid and Neuroenteric Cysts.  Youmans Neurological Surgery, 6th ed. Chapter 136, p 1523

[4] Id

[5] An Analysis of Intracranial Epidermoid Tumors with Malignant Transformation: Treatment and Outcomes. Nagasawa, DT, Choy, W. Clinical Neurology and Neurosurgery. 2013, p1071.

[6] Intracerebral Epidermoid Tumor: A Case Report and Review of the Literature.  Iaconetta, G, Carvalho, G et al. Surg. Neurology. 2001, p218-222.

[7] Id, p220

[8] Id.

[9] Epidermoid, Dermoid and Neuroenteric Cysts.  Youmans Neurological Surgery, 6th ed. Chapter 136, p 1523

[10] Epidermoid Tumor Presenting with Trigeminal Neuralgia and Ipsilateral Hemifacial Spasm: A Case Report. Otsuka, S, Nakatsu, S et al. Archive for Japanese Surgery. 1989, p245-249.

[11] Management Strategy for Brain Tumour Diagnosed During Pregnancy.  Lynch, J, Gouvea, F et al.  British Journal of Neurosurgery.  2011, p225-230

[12] Intracranial Squamous Cell Carcinoma Arising in an Epidermoid Cyst. Acciarri, N, Padovani, R, et al.  British Journal of Neurosurgery.  1993, p 565- 569.

[13] An Analysis of Intracranial Epidermoid Tumors with Malignant Transformation: Treatment and Outcomes. Nagasawa, DT, Choy, W.  Clinical Neurology and Neurosurgery. 2013, p1071-1078.