Book Review and Interview: Joshua and the Shadow of Death

A couple of months ago, I was asked to write a book review on the first novel in the Berserker Series called Joshua and the Shadow of Death by author Gary McPherson. Unlike most of the literature that I spotlight and/or review on this blog page, which generally consists of a combination of published medical research, chronic illness self-help books, and occasionally other forms of scientific or non-fiction-type writing, Joshua and the Shadow of Death is a fictional thriller that is premised on resolving the mystery behind the suicide of Harold’s adoptive father, Richard Brown, as written from the perspective of the family’s psychiatrist and personal friend, Joshua Zeev. In cohorts with Dr. Zeev to resolve the remaining questions left behind in the wake of Mr. Brown’s tragic death, a significant portion of the story-line of this book centers on Harold’s (or Harry as Dr. Zeev calls him) mental health and controlling the symptoms of a rare, hereditary psychological disorder known as Berserker Rage Syndrome or Blind Rage Syndrome.

The chief symptoms of Berserker Rage include “sudden, impulsive, uncharacteristic violence” in which “the usually nonviolent, peaceable patient savagely assaults others (often strangers); experiences amnesia during episodes of ‘blind rage’; angrily overreacts to an actual external stimulus toward which the rage is directed; episodically exhibits extraordinary physical strength and relative immunity to injury; and is, by definition, not under the influence of drugs or alcohol, brain damaged, nor suffering from other major mental illnesses” (Diamong, 1996, p. 167-168). This exhibition of both violent and aggressive behavior amid those affected with Berserker Syndrome, however, theoretically results from the presence of monoamine oxidase A (MAOA) genetic variants – some of which have traced back to the historically debated “Berserker Vikings,” a legendary and “sinister brotherhood of warriors” originating from Scandinavia that were perceived social outcasts because they burgeoned “on the border between life and death, fueled by war and distinguished by the ecstatic battle fury” while stuck in trance-like state (Hjardar, 2018, para. 2). Interestingly enough, my own genetic testing affirmed that I also have what is called “The Warrior Gene,” which is extremely fitting considering the amount anger, rage, and frustration I have personally experienced not only in learning to live with multiple rare medical conditions, but also in learning how to deal with the difficulties in communicating my own pain and symptoms to friends, family, and the medical community as a whole.

At this point in time, the American Psychiatric Association has yet to formally categorize the constellation of symptoms associated with Berserker Rage Syndrome as its own entity in the Diagnostic and Statistical Manual of Mental Disorders (DSM) outside of the more general psychiatric diagnosis of Intermittent Explosive Disorder (IED), which is a type of “impulse control disorder marked by problems controlling emotions and behaviors, and result in behaviors that violate social norms and the rights of others” (Coccaro, 2018, para. 1). However, Berserker Rage Syndrome is still clinically perceived as a legitimate psychiatric condition by many mental health experts, who argue the difference between the two conditions is that Berserker’s includes the genetic predisposition towards violent and aggressive behavior and thus programmed into the nervous systems of Berserker patients via explicit heredity patterns as demonstrated in a multitude of other physiological and psychological behaviors and disorders throughout human evolution. Accordingly, one of the primary challenges in unravelling the conspiracy behind Mr. Brown’s suicide concerns Harold’s ability to not only overcome the overwhelming sense of grief and loss over the death of his adoptive father (and, later, his mother), but also learning how to deal with the functional limitations of a mental health condition that’s no fault of his own in order to have the strength uncover the surprising and truths hiding just beneath the surface of consciousness in this novel.

In addition to being given an opportunity to both read and review this book, however, I was also provided the privilege of interviewing the author of Joshua and the Shadow of Death, Gary McPherson, to converse about his own experiences in living and working with a chronic rare condition called Behcet’s Disease (along with some other chronic comorbidities) as well. For those of you who aren’t familiar with Behcet’s, this syndrome is best described as “a rare, chronic, autoimmune, autoinflammatory disorder of unknown origin. Its manifestations are thought to be caused by vasculitis resulting in damage to blood vessels throughout the body” (American Behcet’s Disease Association, 2014, para. 1). The principal symptoms presenting in this condition include the onset of flu-like symptoms, painful round or oval sores on the mouth and/or genitals, acne-like sores and pus-filled lesions on the skin, nodule development on the front-side of the legs, eye inflammation or blurred vision, vasculitis or thrombophlebitis in both the small and large veins, central nervous system dysfunction, and joint pain, swelling, or redness just to name a few (Genetic and Rare Diseases Information Center, 2018). Although Behcet’s is clearly a physiological disorder in nature – as opposed to Berserker’s Rage Syndrome, which is a psychiatric condition – there is still a definitive connection between the author’s personal history both in being adopted and later receiving a diagnosis of a relatively rare genetic disease and the character development of Harold. As with most things in life, we all know there is often some hidden truth laying buried within the fiction and the line used to separate physiological and psychological ailments is vividly fine at best. Nonetheless, here are McPherson’s answers to my interview questions pertaining to how this devastatingly rare, genetic disorder impacted his life and work – both leading up to and following diagnosis.

In the press release released by JKS Communications, it states that you did not receive a diagnosis of Behcet’s disease until you were 32 years old. When did you first start to experience symptoms and how long were you “undiagnosed” for afterward?

I first exhibited symptoms at 9 weeks old. I had crops of sores coating my mouth and throat that lasted a couple of weeks, according to my mother. I was unable to take a bottle. It was very traumatic for her. I continued to have those symptoms, including very high fevers, very high white blood cell counts, and other symptoms up until I contracted Uveitis at age 32. Uveitis led the doctors down the correct path to my diagnosis.

How many doctors did you visit before you received a diagnosis?

In the year they diagnosed me alone there was a team of five ophthalmologists, my primary care, and a team of rheumatologists—I dealt only with the rheumatologists’’ expertise in Behcet’s.

Did any of your doctors minimize your symptoms and/or infer that your condition was “all in your head”? If so, how did that make you feel at the time and did it influence your career as a writer?

The bigger issue was doctors misdiagnosing. I have been tested for everything from Herpes to Leukemia to AIDS. That experience did influence my writing of Joshua and the Shadow of Death. Joshua’s misdiagnosis and trial and error with Harold’s childhood are part of what drives Joshua’s narrative in this first novel.

What was the hardest part about waiting for a diagnosis?

Being adopted, I never knew if it was a common genetic problem, or worse if it was something I could pass on to my spouse. There were times I wondered if I would survive, with good reasons. I once survived a fever of 110 degrees. When I was diagnosed at age 32 the symptoms were so advanced; I was given less than 5 years. That was 20 years ago. I keep telling my doctors to hang in there, one of these years they’ll be correct.

The press release also mentions that your “battle with Behcet’s, which has also caused Fibromyalgia and Fibromatosis, make it difficult to physically type” and “slow” down your writing process. What type of things help you to overcome the physical limitations of your conditions on really bad symptom days?

When people would ask me this question in the past, I used to joke that it was better living through Chemistry. Unfortunately, my body is now resistant to common, opioid-based, pain medicines. There are a couple of muscle relaxers I can tolerate in very low doses. Unfortunately, the way I deal with it today is to stop writing when I have a really bad day. To help offset this, I try to take advantage of the good days. On average, I can get in two hours a day, three days a week before needing to take a day off. In the winter it’s less than that.

Do you find it easier to work through pain or take a break if your body is telling you to do so?

I have learned it is better to take a break. I used to try to fight through it. The result was either gibberish on the page or a version of writer’s cramp that would lock my fingers in place for up to two days, even with muscle relaxers. Dealing with the ever-progressive pain has been the toughest part at this point in my life. In my younger days, I worked as an IT Manager, and I was full speed for 365 days a year. It’s been tough learning to put on the tortoiseshell and slow down.

Which symptom(s) do you think limits your ability to write/work?

I have tendonitis and Fibromyalgia in my hands. Also, I have neuropathy in my forearms. All three of those together are what stop my writing on a normal day. Although Behcet’s has taken its toll, it’s these secondary symptoms and diseases that have finally knocked me down several notches. In addition, I injured my back when I was in my early 20’s. Behcet’s loves to go after areas that are already damaged. So, sitting or standing for too long can make me forget about my hands, in a bad way.

There are a lot of running themes and interesting characters, relationships, and critical subjects that are touched on throughout Joshua and the Shadow of Death. How did your personal experiences in having a rare disease and other chronic illnesses influence you to include these elements in the book during the writing process?

For the first book in this series, I wanted to do something different. I’m telling the story from the doctor’s point of view, as opposed to the characters with the disease. By thinking through how people see me and my challenges, Joshua and the Shadow of Death gave me an opportunity to allow the reader, and myself, to experience what it is like to have an unknown condition from the viewpoint of people close to the patient, as opposed to the patient. Of course, this is a mystery thriller, so I took that relationship dynamic and placed it into the thriller narrative.

Out all the main characters in the book, who do you think you personally resemble the most and why?

I love answering this question because it is an easy one. Harold is 100% me. From his sense of humor, his need to protect his friends and family, to his medical condition. I only wish I was 6 foot 5 instead of 5 foot 8.

Was there a reason that developed the plotline of the book around psychiatric illness rather than chronic illness? If so, why?

There is a twist to my real-life story. I am adopted. My adoption left us with a big mystery even after successfully diagnosing Behcet’s. It is very rare in the U.S. 25,000, give or take, but in the Middle-East and East, it is a common disease. My bright blue eyes, fair skin, and bald head with a touch of gray on the side do not appear to be all that Eastern. For the disease, it turns out my unknown father was of Turkish descent. My birth mother had immigrated to the U.S. with her family from Denmark, so I’m half Danish. Being half anything in the U.S. is exciting since, as Bill Murray put it once in Stripes, “We’re all mutts.” Researching Dane’s history brought me to the Vikings and the Berserkers. That gave me the idea of creating two orphan half-brothers who did not know they were berserkers in modern-day America. This series gives me the ability to pull in every angle of my life.

Do you know anyone, or have you ever met anyone, with Berserker/Blind Rage Syndrome?

There are a lot of stories with people going “Berserk” in battle or emergencies in contemporary times. The Berserker in this series is a combination of fiction and fact. I researched original legends, as well as original “accounts” by the Vikings as well as their enemies. I also researched modern-day examples of people going “Berserk.”  I took all this information and created a modern-day Berserker.

Managing health and wellness when you have a chronic illness and/or rare disease is often maddening at times and it’s easy to see how you made the connection between the Berserker Legend and Behcet’s Disease. Has your experience with have Behcet’s Disease, Fibromyalgia, and Fibromatosis ever sent you into an episode of rage? If so, can you give an example and discuss how the episode was resolved?

When I was young, crops of mouth sores were common. Growing up in the ’60s, ‘70s and early ‘80s, roughhousing was common. Unfortunately, hitting me in my mouth when I had sores always triggered a rage. My older brother, who could easily take me as a kid, ended up on the wrong end of my rage one day. He accidentally hit my mouth when we were roughhousing, and I ended up knocking out one of his baby teeth. He got tooth fairy money, so it ended okay. Normally I would hit inanimate objects as I do not hit people as a habit.

Do you have any advice for those living an undiagnosed physical or mental illness on how to get a proper diagnosis and/or the best medical care?

Be your own advocate. Make sure you keep copies of your medical records. There is a lot of groupthink in the medical community. If you have a rare, or unknown disease, try and find a doctor who is open-minded and willing to research every possibility around your condition.

I would add there is a new wrinkle with modern medicine: WebMD and other online medical sites. One of the worst things you can do is tell your doctor you read something online. The exception to this scenario is finding information from medical colleges. I was very fortunate; I started my career at Microsoft in 1992. I had access to the internet before people knew what that was. When I was diagnosed in 1997, I knew how to query and bring up research papers from places like MIT or Boston College. Take the time to educate yourself on how to find medical information your doctor will value. My doctors were always impressed with the medical school articles I would bring to them when I had questions on experimental treatments or possible complications.

What advice would you give to other inspiring writers that may be suffering from a chronic and/or rare disease?

First, if you want to earn an income writing, this is a marathon, not a race. Even healthy people can take years to see their work produce an income that will support them. My financial goal with writing is to one day be self-supporting again.  As I like to say, at 52 I prefer to be depositing into Social Security, not requesting an early withdrawal because my body has managed to disable itself.

Let’s put aside economics and focus on the craft. The most important advice I can give is this, permit yourself to work at your own pace and style. That action will set you free to write the way that works best you. The biggest killer to the creative process, in any discipline, is the inability to create in your way. (G. McPherson, personal communication, December 7, 2018).

If you’d like to purchase a copy of Joshua and the Shadow of Death,

please visit one of the following online retail locations:

References:

American Behcet’s Disease Association (2014). Behcet’s Disease. Retrieved from http://www.behcets.com/site/c.8oIJJRPsGcISF/b.9196317/k.904C/Behcets_Disease.htm

Coccaro, E. (2018). Intermittent Explosive Disorder in Adults: Treatment and Prognosis. Retrieved from https://www.uptodate.com/contents/intermittent-explosive-disorder-in-adults-treatment-and-prognosis

Diamond, S.A. (1996). Anger, Madness, and the Daimonic: The Psychological Genesis of Violence, Evil, and Creativity. New York: State University of New York Press.

DNAexplained (2013). The Warrior Gene. Retrieved from https://dna-explained.com/2013/06/16/the-warrior-gene/

Genetic and Rare Diseases (GARD) Information Center (2018). Behcet Disease. Retrieved from https://rarediseases.info.nih.gov/diseases/848/behcet-disease

JKS Communications (2018). Gary McPherson Examines the Beast Within in His Breakthrough Thriller. Retrieved from https://www.jkscommunications.com/gary-mcpherson-examines-the-beast-within-in-his-breakthrough-thriller/

McPherson, Gary (2018). Joshua and the Shadow of Death. Charlotte, NC: Author.

McPherson, Gary (2018). The Berserker Series. Retrieved from https://gmacwriter.com/

the-device-hospital-surgery

Patient Safety Awareness Week – A Book Review of “Your Patient Safety Survival Guide: How to Protect Yourself and Others From Medical Errors”

Seeing as though today is the final day of Patient Safety Awareness Week, I thought this would be the perfect time to present my review of a highly acclaimed book on patient safety and healthcare. Anyone who knows me will tell you that I am a pretty avid reader. I will read just about anything and everything, just as long as it appeals to my emotions and/or experiences at any given time. Given that my life currently consists of ongoing medical appointments and other healthcare management tasks, most of the supplemental reading I’ve been doing over the last few years (outside of assigned reading for school and keeping up with pertinent medical journals) has primarily consisted of self-help books relating to chronic illness, psychology, and navigating the medical system. So, when I was given the opportunity to review Your Patient Safety Survival Guide: How to Protect Yourself and Others from Medical Errors by Gretchen LeFever Watson, I was extremely elated. Although I had originally planned to take advantage of this opportunity during winter break from school since I knew that I would be recovering from a total hysterectomy and would be looking for things to do while stuck in bed, I am honestly kicking myself for not clearing some time in my schedule prior to surgery because I could have really used this information before my own patient safety was put at risk.

For those of you who are unaware, I was scheduled to have a total hysterectomy on December 8, 2017, using the da Vinci Robotic method in order to rectify the excessive and erratic bleeding that started as a result of complications from late-onset endometrial ablation failure following my NovaSure procedure in 2015. Unfortunately, what was supposed to be a “minimally invasive” procedure with “minimal scarring” and a “quick recovery period” turned into this mess…

Hysterectomy Scar Resulting in Injuries Caused by the da Vinci Surgical System

Photo by Undiagnosed Warrior (2017). Hysterectomy Scar Resulting in Injuries Caused by the da Vinci Surgical System [Image].

… but I will go into more details of this tragic event at a later time. Needless to say, it would have been far more helpful to have read this book before I actually needed the helpful tips supplied in the pages of Your Patient Safety Survival Guide.

The first thing I want to mention before reviewing the content of this novel is that I found myself drawn to this book simply because the author’s personal and professional background intrigued me. From a professional standpoint, Dr. Gretchen LeFever Watson holds a Ph.D. in Clinical Psychology and has held a variety of training and leadership positions in hospitals and community-based healthcare programs. Not only has she received numerous awards and grants for her research, but her work has also generated a great deal of media attention and recognition from other subject matter experts in the fields of psychology and healthcare as well (Watson, 2017). This is in addition to publishing two other patient safety books along with Your Patient Safety Guide and several peer-reviewed research papers. Considering that the author is clearly well-versed and has a long-standing history of working within both the past and current structure of the American medical system, I knew she would offer a great deal of insight from the professional side of health care. The fact that Dr. Watson has also been an advocate for patient safety and wellness from personal experiences as both a caregiver for her mother and as a parent when a medical error almost took her daughter’s life at the young age of only four-years-old made me think that her opinions would likely represent a more balanced perspective overall (Watson, 2017). As someone with multiple chronic and rare conditions, and a student studying for a degree in clinical psychology that has also spent many years working in veterinary medicine prior to disability myself, I was definitely interested in reading her perspective on some of the issues currently plaguing the safety and care of patients. Thankfully, this book did not disappoint.

Aside from the fact that each chapter of Your Patient Safety Survival Guide covered a wide breadth of obstacles in receiving adequate medical care (e.g., safety habits and best practices, avoidance of medication errors and overprescription of dangerous medications, and the prevention of infections and common medical injuries that can occur as a result of human error, negligence, malpractice, and purely bad luck), the thing that I liked most about this book is that every topic discussed in the text provides readers with an eclectic explanation illustrated through research statistics and patient examples. Chapter 1, for instance, notes some shocking statistics that suggest “at least 440,000 patients die needless deaths in US hospitals each year” and the “initial estimate of the financial impact of the patient safety crisis indicated it totaled around $5 billion annually, about one-quarter of which involves out-of-pocket expenses” (Watson, 2017, p. 7-8). While these numbers are obviously alarming, the author prevents hysteria or anxiety over such occurrences by putting the situation into a more realistic perspective by detailing the potentials causes of medical error and offering ways to combat it as either a patient receiving care or professional providing care.  In this way, the author is avoiding labeling the problem according to a single source but rather a complex, systematic problem that can result in an infinite number of breakdowns within the medical system itself. Personally, I find this account refreshing because it first acknowledges the problem, without placing blame on either the patient or medical professionals specifically, and then it explains the how and why medical errors happen. It also makes it easier for the reader to accept the information before the author moves on to discuss her own recommendations and potential solutions for resolving the problem at hand. Nevertheless, one factor that distinguishes this book from many other patients and/or chronic illness texts is that Dr. Watson wrote the content of this book to equally address a combined audience of both patients (or their family members) and medical professionals alike.

Another important element of Your Patient Safety Survival Guide that I found relatively helpful is that each chapter presents the reader with either a tool that can help them measure and target goals relating to different variables of patient safety or an action plan that can minimize the potential for common medical mistakes. Although most of the tools and guidelines presented in this book are based on logic and common sense, I can personally attest to how easy it is to forget even the simplest of things, especially when you’re anxious about an upcoming surgery or procedure, concerned as to whether the physician will take your medical complaints seriously or not, or you’re just simply distracted by pain or other symptoms. In these cases, simpler is almost always going to be better in the long run anyways, although some of the planning tools and safety tips were also new to me as well. Still, the biggest takeaway that I got from reading this book came from the seventh and final chapter entitled Acceptance, Apology, and Forgiveness: Safeguard the Lives of Patients and Healthcare Providers. One of the reasons that this specific chapter stood out to me the most is that the end of this book overly emphasizes the fact the doctors and other healthcare providers are only human and, therefore, they’re liable to make mistakes just like anyone else. As Watson (2017) points out, “we all make errors. Our errors rarely result from the willful disregard for others. Factors beyond the control of providers often influence the emergence of error, and, when errors occur, providers are often in need of compassion – just like event’s primary victims” (p. 140-141).

With my own significant complications resulting from a major medical error fresh on my mind, the stories and information shared within these final pages clearly hit too close for comfort on a number of occasions. In many ways, it would have been easier to blame the surgeon and his support staff who performed my hysterectomy for everything. Lord knows that I had plenty of good reasons to rightly justify my anger and hatred over the situation, but what good would that have done in the end? Being angry about it wouldn’t make me feel better or allow me to heal any faster; yelling at the doctors and the hospital staff also wouldn’t prevent similar mistakes from happening to other patients in the future. Though it’s far more comfortable to blame the doctor when things don’t go as planned, it’s equally as hard to accept that it’s rare for patients to consider the harm we inflict on medical providers by establishing unrealistic expectations regarding our health care wants or needs. This is another reason why I really enjoyed reading this chapter because I liked that Watson (2017) discusses both the physiological and psychological impact that medical errors have on both the patient and their families, as well as the significant damage and stress that these faults can have on healthcare providers and facilities. Once again, it’s easy to forget that doctors and their support staff already feel the train and the pressure simply from completing the tasks they were trained to do in the first place. On the other hand, there will always be those few providers who tend to forget that patients are also human and just as fallible as they are themselves. Watson (2017) describes the apparent divide amongst patients and professionals best by suggesting that the biggest flaw in the wake of a major medical error or mistake occurs when the lines of communications are closed off, such as when full disclosure about the nature of the error is avoided in order to favor one’s pride instead.

In the end, there really isn’t too much more one could ask for in a single book regarding patient safety and healthcare, but if I had to choose one thing to criticize about any part of this book it would have to do with the fact that some of the chapters offer a rather viewpoint on the use and/or abuse of stimulants and opioids for managing chronic symptoms or pain. However, this is just my personal perspective based on taking these (or similar) drugs in order to manage my own symptoms either in the past or present, in addition to considering alternative opinions from other chronic illness patients who have also dealt with the medical system for an expansive period of time as well. Even if I don’t necessarily agree with all of the author’s personal and professional opinions as deliberated throughout Your Patient Safety Survival Guide, I still respect and appreciate the author’s judgments on these topics as she does support her logic using mainstream facts and theories regarding these types of medications. I am also very much appreciative of Dr. Watson’s willingness to devise solutions to the problems in healthcare and patient safety rather than focusing on the inadequacies of the system alone. I really do believe that this book – and Dr. Watson’s research and safety initiatives for patient care – will prove beneficial for anyone engaging in any part of the medical system to some degree. More importantly, I would highly recommend this book to anyone managing a chronic or rare disease since we are among the most vulnerable population of victims exposed to potential medical mishaps as we are routinely asked to put our faith, trust, and livelihood in the hands of practitioners of medicine.

If you’d like to purchase a copy of Your Patient Safety Survival Guide: How to Protect Yourself and Others from Medical Errors, please visit one of the following online retailers:

https://www.amazon.com/Your-Patient-Safety-Survival-Guide/dp/1538102099

https://rowman.com/ISBN/9781538102091/Your-Patient-Safety-Survival-Guide-How-to-Protect-Yourself-and-Others-From-Medical-Errors

https://www.barnesandnoble.com/w/your-patient-safety-survival-guide-gretchen-lefever-watson/1126025512

https://play.google.com/store/books/details/Gretchen_LeFever_Watson_Your_Patient_Safety_Surviv?id=XQglDwAAQBAJ

References:

Brown, A., Demyan, A., & Agha, S. (2014). Research on Victimization Among People with Disabilities. Retrieved from https://www.nij.gov/topics/victims-victimization/Documents/violent-victimization-twg-2015-browne-demyan-agha.pdf.

Cleveland Clinic (2018). Hysterectomy: What You Need to Know. Retrieved from https://my.clevelandclinic.org/health/treatments/4852-hysterectomy-what-you-need-to-know.

Drugwatch (2018). Da Vinci Surgical System. Retrieved from https://www.drugwatch.com/davinci-surgery/

Good Reads (2016). Gretchen LeFever Watson. Retrieved from https://www.goodreads.com/author/show/15244917.Gretchen_Lefever_Watson.

Watson, G. L. (2017). Your Patient Safety Survival Guide: How to Protect Yourself and Others from Medical Errors (1st ed.). Lanham, MD: Rowman & Littlefield Publishers.

Wortman, M. (2017). Late-onset endometrial ablation failure. Case Reports in Women’s Health, 15, 11-28. https://doi.org/10.1016/j.crwh.2017.07.001.

Chronic Illness Put My Olympic Dreams On Hold. Here’s What It’s Like To Watch The Games In PyeongChang

Recently, Bustle Magazine asked me to write a follow-up article to 10 Ways Living With a Chronic Illness is Like Training for the Olympics that was published on The Mighty for the 2016 Summer Olympics. The new article, Chronic Illness Put My Olympic Dreams On Hold. Here’s What It’s Like to Watch the Olympic Games in PyeongChang, went live on the Bustle website today. Check it out and let me know what you think.

Reblog: How Pansy Got on Medicaid By Being Smart, Scrappy & Persistent

This article covers one of the best resources available for Undiagnosed Patients. There’s a common misconception that patients who are working or have a spouse/partner that makes too much money cannot qualify for assistance to help pay for the costs of medical care but that’s actually not true. I’ve personally been recommending the Buy-In Programs for years now because it literally saved me from financial ruin in the process of searching for a diagnosis. Getting answers usually requires extensive medical testing, multiple specialty office visits, and different therapies or treatment – which can easily cost a small fortune, even if you have “good” insurance. 

http://wp.me/p6tA55-4qj

 Guest Feature: Jim’s Story

 

Vascular Compression Syndromes:

A Likely Cause of Chronic Fatigue Syndrome

Written by: Jim, Colorado

One of the most frustrating things I have read since getting diagnosed with May-Thurner Syndrome (MTS) is that if you don’t develop Blood Clots or Deep Vein Thrombosis (DVT) with this condition, you are most likely asymptomatic. Unfortunately, very few doctors are aware of the many symptoms that MTS can cause, especially without blood clots or DVTs. Since my personal experience with May-Thurner Syndrome is vastly different than most stories I’ve read about this condition, I would like to share my story about how I finally got diagnosed with MTS and the many seemingly unknown problems it can cause.

May-Thurner syndrome is an anatomical variant that can lead to vein compression and, in a small percentage of people, blood clots and DVTs. Since I never developed blood clots with this condition, none of my doctors ever thought MTS could be the cause of so many of the problems – most of which I’ve had for the majority of my life, such as debilitating fatigue. After recently getting diagnosed and treated for this condition, here are some of the problems that MTS can cause that are not widely known. Many of my own problems started around age 13, although looking back there were definitely signs of this condition even early than that. Some symptoms that many people first experience when developing blood clots with MTS is anxiety and fatigue. I’ve had anxiety, especially social anxiety, from an early age. I was extremely shy and insecure as a kid. Then, at age 13, I started experiencing extreme fatigue and, shortly afterward, depression. This is when I probably should have begun developing blood clots as commonly associated with this condition, but I’ve learned that most people with MTS never will and many will never even know that they have this condition. From there I would go on to develop chronic fatigue, which would negatively impact my life for the next 25 years.

May-Thurner syndrome is a poorly understood and rarely diagnosed condition. It seems to me that almost everything that is known about MTS is incorrect. For instance, most websites will say that it’s a rare condition that’s commonly diagnosed in women who are between 20 and 40 years old and that it’s not a hereditary condition. However, it’s actually an anatomical variant that is estimated to be found in 20-25% of the population, possibly even much higher. About half of these people could also have at least some compression of the iliac vein and be experiencing symptoms as a result of this condition. MTS occurs when the spine begins pressing down on this very large vein, blocking normal blood flow. It can also occur at almost any age. Since women tend to have a more pronounced lordosis of the spine, they are approximately 4 times more likely than men to receive a diagnosis of MTS. It would also seem that MTS is more than likely hereditary because it can be caused, in part, by the shape of a person’s spine.

After having a stent place for May-Thurner syndrome, I can say that MTS has undoubtedly been the root cause of my anxiety and unexplained chronic fatigue or excessive daytime sleepiness (or whatever you want to call it) that I’ve had for more the past 25 years. I don’t know of many doctors that will tell you that May-Thurner syndrome can cause chronic fatigue but the doctor that diagnosed me knows it can cause this extreme fatigue. My doctor also told me that MTS is a condition that is usually diagnosed in pregnant women due to rapid weight gain that causes the compression of the iliac vein and, sometimes, DVTs. So, for a healthy male with no blood clots, this is probably the last condition most doctors would look for — and that’s the problem that I’ve discovered about this condition. From my experience, I can say that May-Thurner syndrome can absolutely cause chronic fatigue syndrome. So along with anxiety, chronic fatigue, and depression, MTS can also cause cognitive dysfunction as well. I’ve had attention deficit disorder, confusion, and memory problems since early childhood. It’s likely that I was born with, or developed, significant compression of my left iliac vein early on in my life, thus causing many of these symptoms. The problem that MTS is that it can be especially devastating for kids and teenagers who are dealing with these symptoms but are not quite able to fit in with their other “normal” friends, so an inability to excel or succeed at work or school due to poor concentration and fatigue could be an indication of MTS, much like CFS.

When my problems began getting worse last year at the age of 38, I was determined to figure out what was causing the unexplained, extreme fatigue that I’ve had for so long.  My symptoms up until this point could only be described as mild narcolepsy due to the excessive daytime sleepiness and hypnagogic hallucinations with sleep paralysis that I would occasionally experience. As someone with narcolepsy once said, “one of the first places I go to when I get in a car is to sleep” and I could sleep for days when riding in a car! (Incidentally, 13 and 38 are the exact ages people are usually diagnosed with narcolepsy – a diagnosis I was trying to get a year earlier than my MTS diagnosis). I had every sign and symptom of narcolepsy except for cataplexy, although MTS could very well cause this too since it causes weakness in the legs as well. I believe that May-Thurner syndrome could very likely cause sleep associated disorders, including narcolepsy.

After a long and stressful period in my life, my anxiety began to get much worse and I started experiencing brain fog and memory loss. I also began having dizzy spells, sort of like the entire room was spinning, and I was having balance issues as well. For instance, I would be walking along and then suddenly just start leaning to my left side. One day, when I was out walking with my daughter, I ran right into the door of a store we were entering. At the time, it was actually pretty funny – we both had a good laugh about that one. After going to see over a dozen different doctors during the following 6 months, I was not any closer to finding the cause of my fatigue. I had all kinds of tests, include abdominal ultrasounds and magnetic resonance imaging (MRI) of the brain, but the only thing doctors found was that I had left-sided varicocele veins. Apparently, a doctor had mentioned that I had these to my parents around the age of 13. I was having a dull/ache and pain on the left side of my groin at the time, so that made more sense. Still, even after all of this, doctors kept telling me that I was a healthy male and that I had nothing to worry about, even though I felt like I was dying all the time. After a couple of months of feeling miserable, I decided to have a varicocele embolization to see if this would help any of my problems since I read that they could also cause fatigue and low testosterone.

When the interventional radiologist performed the embolization, it turned out to be one of the best/worst decisions I’ve ever made. What I didn’t know at the time, however, was that this procedure redirects blood flow out through the left internal and external iliac veins, causing an increase in blood flow through these veins. My varicocele veins actually started getting worse after this and the brain fog, which was starting to slowly get better, began getting much worse. Breathing also became very difficult and I developed worsening anxiety, including an impending sense of doom for some reason. My hips and legs would hurt when either sitting or standing for any length of time. Both legs felt like they weighed 300lbs each and were very weak. I would just sit around and wonder about how I could keep going, especially with the way things had been going for such a long time. It took me awhile but I finally went back to the doctor that performed my embolization and told him about all the problems I’d been having since then. That’s when he told me that I probably have a condition called May-Thurner Syndrome. After searching MTS and fatigue online, I found a website from a vein clinic that talked about how MTS can cause symptoms like anxiety, fatigue, depression, and exercise intolerance. The website also stated that those with a 70% or more compression of the left iliac vein can cause leg pain and/or swelling, pelvic pain, pain during intercourse (dyspareunia), pelvic pain after intercourse (post-coital pain), lower back pain, and urinary bladder discomfort. This description almost describes nearly all of the symptoms I had been having exactly – I couldn’t believe it! At this point, I knew that I had finally discovered the cause of all the problems that I had been having for all these years.

After a pelvic venogram confirmed that I actually had MTS, with about 70% compression of the left iliac vein, he chose to place a stent in the vein to allow for proper blood to flow through. I wasn’t sure what to expect next, so I left the hospital and went home to relax. That night, I started getting the worst lower back pain and I felt like I was half-paralyzed. I remember thinking to myself that it was just my luck and I had somehow managed to make my problems even worse than they were before the stent placement. During the middle of the night, however, the pain slowly began to disappear and I felt a little more relieved. The only way I can describe how I felt when I woke up the next day is that it felt as if I had been placed in a completely different body – I felt 20-years younger overnight; I was breathing so much better and could finally take a deep breath; the terrible anxiety and brain fog were gone; my legs felt so much lighter that I felt like I was a balloon and I could almost fly away at any time, and the extreme fatigue was also starting to fade as well. Additionally, I had the strangest sensations all over my body as blood was probably flowing normally (through my whole body) for the first time in my life. Every ache and pain in my body were now gone, although it took about 2 months for my sleep patterns to return to normal again. I finally started feeling like my old self – only a lot less fatigued.

It was around this time that I met Nikki (the Undiagnosed Warrior), who had also been diagnosed with May-Thurner syndrome and pelvic congestion syndrome, as well as two other vascular compress syndromes: Nutcracker syndrome (NCS) and superior mesenteric artery syndrome (SMAS). It is also when I first learned about NCS, although I shortly discovered that it was also a known cause of CFS and a very similar condition to MTS. Nikki was the first person I’ve ever been able to talk to that knows about the many problems that MTS can cause for those affected by it. In fact, our running joke with one another is “You know what causes that right?” – “May-Thurner Syndrome!!!” LOL.

My hope in sharing my story is that maybe someday it will help someone else receive a diagnosis, instead of suffering unknowingly with this miserable condition. It’s amazing that it has taken over 25 years for someone to figure out that I most likely had MTS all my life and it shouldn’t be that difficult. I wish one of the many doctors I saw along the way would have known about the many problems and symptoms that May-Thurner Syndrome can cause, especially in those who haven’t develop blood clots as expected. The good news is that doctors have been stenting for MTS for the past 20 years and if you do have this condition, a simple stenting procedure could give you great relief from your symptoms – I know it did for me. [Note: It is imperative that your doctor or surgeon check for other vascular compressions syndromes prior to agreeing to stent placement or pelvic embolization as a treatment because it can have the potential to increase pain and symptoms, rather than relieve them, especially when other vascular compression syndromes are present. Please consult your physician to find out more information]. Thank you for reading my story!


Jim Johns Photo for Article Submission

Contributor Information: Jim is an active member of the Undiagnosed Warrior Team and a moderator of the Undiagnosed Warrior Support Group. He advocates for the Undiagnosed by educating both patients and professionals about vascular compression syndromes, particularly on May-Thurner Syndrome and the random symptoms that the condition can cause.