Happy holidays to all. I’ve been on a self-imposed hiatus from regularly contributing to this Blog because in June, 2015, I unexpectedly faced a challenging medical problem and at the time there appeared to be no quick diagnosis in sight. I knew battling the problem and embarking upon the diagnosis journey was going to be difficult but it has proven to be longer than I expected and the frustration of encountering doctors examining me solipsistically, instead of professionally trying to identify or solve my medical problem, has worn away at my resiliency, compromised my hopeful nature and replaced it with detachment and lassitude. But with the passage of time comes revelatory perspective and it is that sagacious vantage point which is keeping me sane during this arduous diagnostic ordeal thus far at 6-months and counting. While writing about my medical problem is physically difficult, I’m hoping my succinct account will be personally therapeutic and also help the many other people going through the exact same situation with un-diagnosed or incorrectly diagnosed medical problems.
What happened to me?
In short, I fell backwards off the top of a 10-foot ladder in December, 2014, after standing fully erect on its top step and slipping while trying to access a household item for my Mom. I landed on the cement floor in my garage and the brunt of the fall was absorbed by my upper back, shoulders and neck. I thought I was certainly going to be paralyzed given my vulnerable falling position and the fright of paraplegia images flashed through my mind making the nanosecond accident seem like it was occurring in slow motion. Halfway down, or at some time during the real life nightmare, I remember thinking I couldn’t hit the ground fast enough as the realization of being dependent on a wheelchair for the rest of my life began to set in and the quicker I learned my fate the better off I thought I’d be.
Wheelchair-bound adversities have always represented an important concern of mine because one of the first times I got down and depressed about my many hospitalizations and Crohn’s Disease related surgeries I drove past a public park on a bright sunny day and noticed men my age confined to wheelchairs happily playing with their children. I imagined some were War Heroes forced to give too much of themselves to fight for my freedoms while others were just unlucky with disease or accidents. But from what I could see, none were victims and their enjoyment of life was contagious. I vowed never again to view my Crohn’s Disease “challenges” as anything but and I drove away feeling lucky. Those images have never left my mind and they soon became the foundation of my positive attitude regarding my Crohn’s Disease because they made me realize how lucky I was just to have an autoimmune disease which did not affect my mobility and independence. In many ways, these tough men inspired me to become a prolific Inflammatory Bowel Disease (IBD) advocate.
In any event, after I hit the cement floor and gathered my mental acuity, I slowly checked for blood and when I passed that hurdle I carefully started moving my toes and then my limbs. Amazingly, all seemed okay but when my Mom ran into the garage and saw my flight pattern, I went to the hospital to get checked out. The only serious injury was a Compression Fracture in my upper back. It hurt a great deal and took a long time to heal due to the pro-inflammatory issues inherent in my Crohn’s Disease but considering the reasonable possible outcomes, I considered myself one lucky guy.
After a few months, the Compression Fracture healed and I resumed exercising which, at the time, was primarily comprised of swimming laps and walking because I was also still rehabilitating from a February, 2014, Left Hip Replacement which took a longer time to heal than the norm due to my body’s aforementioned difficulties battling the potential undoing of all successful surgeries, namely, post-operative inflammation. Thankfully my body was beginning to cooperate with my mind and after consistently exceeding weekly lofty exercise goals, my swimming sessions became both my salvation from other difficult real life issues on my plate and they made me feel euphoric and even optimistic about my life. After swimming in a musty indoor pool all winter and spring, I successfully transferred my lap swimming to a beautiful Olympic-sized outdoor pool sometime in late May, 2015. Then on June 30, 2015, a beautiful early summer day in New Jersey, I carefully slipped into the lap swimming lane of the outdoor pool and began my freestyle swimming session. I tried to rotate my right arm to initiate my swimming stroke and I suddenly felt a tremendous pain, deep in my right shoulder. I was so startled by the sharp but deep pain that the lifeguards thought I had a stroke and they dove in to help me get out the water.
I had been swimming for MONTHS so I wasn’t that freaked out by the shoulder problem once I got back home. But within 24 hours the pain extended to my right biceps, triceps and down my entire arm. My local orthopedist sent me for an MRI of my RIGHT shoulder and it was relatively normal save for some understandable bursitis after years of playing singles tennis, competitive softball and pick-up basketball. This is when I started to become concerned and with my coping mechanism and stress outlet of exercise essentially off-limits, I had to reinvent the manner in which I managed stress but my options were limited and all non-physical. Anything which made me sweat usually helped me survive and reading books and playing air guitar while listening to my iPod wasn’t exactly easing my anxiety. Then before I could even come to grips with embarking upon another diagnosis journey and consulting with a more experienced orthopedist the following week, I developed this same severe pain in my LEFT shoulder, biceps, triceps and entire arm. My Pain Management Doctor suggested I see a top orthopedist in New York City and despite his best efforts and genuine dedication to figuring out my problem, he couldn’t. Then one day he asked, “Have you fallen on your neck recently?” I explained the December, 2014, backwards fall off the ladder and he suddenly got concerned and referred me to the spine specialist in his Medical Practice. This is when the diagnosis journey truly left the station.
Before commencing with any treatment, this spine specialist made me go for an MRI of my Neck. Then, during my next visit, he showed me on the MRI how I had a bone spur caught between two (2) particular cervical discs and explained I was likely experiencing resulting nerve compressions which explained my bilateral shoulder, biceps, triceps and arm pain. He called it a “Cervical Radiculopathy” and indicated it could eventually require surgery but he thought an Epidural Injection would ease the pain for a significant period of time such that with additional timely injections I might be able to stave off surgery for a few years. While he was quick to correlate all of my pain to the particular cervical discs, he did express bewilderment that despite my specific severe pain I did not exhibit any weakness in my arms. Still, he strongly suggested an Epidural Injection. At this point of time in August, 2015, the pain on the top of each shoulder felt like something the weight of a piano was resting on them trying to separate each shoulder. I also had intermittent severe stabbing, throbbing and burning pains on the outsides of each shoulder. My biceps often felt so strained and painful, I felt like I was being forced to curl 50 pound dumbbells all day long after I had already worked out with The Incredible Hulk. My triceps similarly throbbed and burned intermittently; all day, and all night long. The biceps pain ran down my arms like it was traveling through my veins and at times I felt all of these pains or just some of them. I could not recognize a pattern nor could I recreate any of the pains.
In the ensuing months I underwent two (2) unsuccessful Epidural Injections and several more diagnostic tests including an EMG test, CT scan and Myelogram. The Epidural Injections seemed to dull the pain but only for a few days. The EMG Test clearly showed I had nerve compressions at the different parts of my arms tested which correlated with the damaged or inflamed cervical discs highlighted in my Neck MRI. But in the hierarchy of medical importance, the EMG test was lower on the totem pole than my “nonsurgical” MRI and “unimpressive” Myelogram. The problem, as I understand it now, was that I had some symptoms of a Cervical Radiculopathy, but not all of them, and my Myelogram was ostensibly normal and it is considered the most indicative test for surgical intervention. Additionally, my limited response to the Epidural Injections seemed to disprove ANY nerve compression at all because if I had such a problem, these injections would have made a more significant difference. As a result, my case was surely not “black or white” and I was stuck somewhere in the middle between needing neck surgery, seeing a neurologist, possibly having serious problems with both shoulders which manifested themselves within days of each other, managing the pain for the rest of my life or completely giving up and eating Double Stuff Oreos for breakfast and White Castle for dinner so that I’d have something to look forward to at bedtime and then in the immortal words of Dave Edmunds and Nick Lowe, “[I’d] have to turn sideways to get thru through the door.” *
The Pressure of Being Your Own Doctor
As you will see below, I then began seeing a wonderful Physiatrist who’s given me back some hope but it is November 30, 2015, and not only have the above-referenced bilateral shoulder, biceps, triceps and arm pains intensified to the point where lying flat and level in bed is my only pain-free position but I also intermittently lose the dexterity between my thumb and forefinger and at times it feels as if each hand is beginning to get numb. To that end, I worry if this goes on much longer how debilitating or painful my symptoms will become. Moreover, except for this Physiatrist and the doctors he’s referred me to, no doctor or surgeon, and I have seen MANY, has told me who to see, or what to do, after they took my money and with the warmth of an international assassin told me, “I can’t help you.” The resulting pressure of having to become my own “Coordinating Physician” also wears heavy on my mind. The amount of medical knowledge I’ve had to learn in order to understand the difficulties in diagnosing my problem is enormous. Moreover, the severity of my pain has begun to compromise my ability to process all the information shared with me during some very productive office visits. For this reason, my sister has had to come to a doctor’s appointment with me and I frequently must being my Mom because most of my doctors are in New York City and I worry about leaving her alone at home in New Jersey for very long.
[A “Physiatrist” is a doctor who is a nerve, muscle and bone expert focusing on rehabilitative medicine creating personalized methods of treatment to improve a patient’s quality of life who’s been disabled as a result of disease, condition, disorder or injury.]
While I’ve never stopped pursing an answer, I began pushing my friends away because I’m already “the guy in the group who’ll never reach his potential because he’s always playing ‘defense’ due to chronic medical problems” and I’m tired of explaining these incredibly frustrating problems to people I love (i.e., my friends) whom I hope never have to worry about these types of problems. Also, the weight of the overall decision-making has fallen on me and between managing my pain and taking care of my Mom, I’m operating on fumes. But, my good friend “perspective” has suddenly popped up and it has emboldened me with the logical awareness that the science of medicine will eventually reveal my medical problem and I needn’t worry for much longer. Alternatively, my symptoms could worsen such that they reach a diagnostic tipping point during which things will get worse before they finally get better. Either way, I must remain positive and objective since in many ways I am functioning as my own doctor by coordinating the different medical specialists treating me and/or deciding which steps to take when I hit a dead end with, for example, a rheumatologist or neurologist. If not, the mere psychological aspects of the situation will start to cause me physical pain and I simply can’t bear any more.
The Lack of Problem-Solving in Medicine
My Zen-like perspective notwithstanding, some medical professionals with anal sphincters as tight as Kim Kardashian’s G-string when she’s 8-months pregnant often add to my overall frustration when they recognize my case as not being “black and white” and then blame it on my incurable, and mercurial, Crohn’s Disease as if it’s a catch-all Medicare Billing Code. I imagine such doctors take the easy way out and use my Crohn’s Disease as an ocean in which to hide their most challenging cases or they choose not to apply their skills and experience because they are lazy, complacent, too concerned with litigious tendencies of unhappy patients or they view their professional obligations as not including problem-solving. This last reason keeps me up at night because in EVERY profession consumers pay professionals to do a job which always involves solving some type of problem. Sometimes that job is easy and sometimes that job is more difficult. Usually, payment for such professional services is commensurate with this degree of difficulty. This is why lawyers typically bill by the hour to account for obstinate adversaries who might refuse to reasonably negotiate a fair settlement and it is why tailors carefully review the capabilities of a garment before agreeing to make alterations to it at a specific mutually agreed upon price. Particulars aside, in each instance, professionals are paid to get the job done and not to look at the legal case or alterable garment and then opine AFTER BEING PAID, “Sorry, what you are asking to be done does not fall into my expertise [or specific medical specialty].”
Notwithstanding the aforementioned abridged, but accurate, explanation of capitalism, some doctors will take your money and review your medical case from ONLY their ego-centric and medical specialty viewpoint and then tell you they can’t help you if your case does not overlap with their medical specialty. By ignoring the patient’s problem-specific perspective, these types of doctors are proliferating this woefully lacking problem-solving deficiency in medicine. Granted, if my case doesn’t rise to the level of surgical intervention, I will understand but I will expect the surgeon to explain why, and to refer me to an area of medicine which can help me, either in a diagnosis or with some of the symptoms. In my humble opinion, if a surgeon decided as such and then explained the decision to me and suggested helpful routes I could take to alleviate or at least minimize the effects of my current problem, I’d consider that a complete transaction. But, shockingly, that has not been my experience.
The Problem-Solver – A Physiatrist
After realizing I had already begun frequenting White Castle and eating Double Stuff Oreos for breakfast, I sought out the “Physiatrist” who had treated me in 2000 when I found myself in a similar un-diagnosable situation even though he doesn’t take any insurance and the costs will likely cause financial Crohn’s Disease to strike my Mom. By way of quick background with this wonderful doctor, I had hurt my Back playing basketball in 1999 and when I fell on the concrete and tried to get up I could tell I had an injury I’d never had before in 20 years of playing hoops. The pain was so severe I had to see a Pain Management Doctor and I was on a very high dose of narcotics just so I could take a shower. But my MRI was NORMAL. Still, I knew something very serious was wrong with me because my body would not be in so much pain. A concerned friend contacted me and before too long I was speaking with the Physiatrist. In short, he believed me and had me undergo a “discogram” which was made obsolete by the MRI technology but it still was reliably predictive of disc problems. The theory behind the discogram was simple: Saline was injected into the discs in my Back under fluoroscopy. A healthy disc would have no problem absorbing the saline whereas a ruptured disc would leak saline like a sieve and that leaking would be captured on radiographic pictures. In my case, it turned out the disc at the L5-S1 level on my spine was ruptured. It was apparently ripped from the inside-out and thus did not show up on the MRI. Every surgeon then wanted to operate on me and perform spine fusion surgery whereas no one would help me when I presented with a normal MRI. (My insurance company at the time would not pay for ANYTHING after the NORMAL MRI so I had to fight them. I detailed my victory and successful surgery in my first book, “Confessions of a Professional Hospital Patient.”)
This Thanksgiving, I’m thankful for Physiatrists
I’m still seeking answers with my Physiatrist but I know he’s trying to solve my problem. I can’t say that about many of the other doctors I have seen. If my problem did not reveal itself in their specialty, all they did was tell me they couldn’t help me. That’s not the case with the Physiatrist. Apparently he’s noticed a rupture in one of my cervical discs but before focusing on my Neck he decided to check my shoulders since they hurt a great deal. We both figured the MRIs would come back normal but BOTH revealed Rotator Cuff TEARS, one of which is apparently quite serious. While I feel I am finally in the right hands, this Rotator Cuff revelation was probably the nadir of my lassitude because I can move my arms in ANY DIRECTION WITHOUT PAIN and someone with such a Rotator Cuff Tear should not be able to do so. Additionally, the MRI of my right shoulder in July did not show this Rotator Cuff Tear and I have not exercised since. The Physiatrist LISTENED TO ME and just before the holiday I had an MRI of my right “Brachial Plexus” hoping to get a clearer picture of the nerves coming from my neck and branching out into my shoulders, biceps, triceps and arms.
I’m still struggling but I now have Perspective, Hope and a Physiatrist. Knowing my doctor is as frustrated as I am with my medical problem is strangely comforting for I know this doctor will not leave me hanging. He will just give financial Crohn’s Disease to my Mom.
*Lyrics from the song “The Knife and Fork” performed by the band, Rockpile on its only released album, “Seconds of Pleasure” featuring Dave Edmunds and Nick Lowe.