Part 2: Demands Add Much Stress To My Condition

     In subsequent doctor visits I voiced my concerns about the pain and my frustrations with the failure of the angioplasty. One year after the stents were inserted, the same vascular doctor, Dr. Huepenbecker, ordered another angiogram. He wrote that he did not believe that another angioplasty (inserting more stents) would be of any benefit, but that proceeding right to a bypass would likely be required. However, while I was having the angiogram, the physician, Dr. A. Merlis, disagreed with Dr. Huepenbecker's instructions and wanted to place another stent on top of the previous stents. Because he could not do the procedure without Dr. Huepenbecker’s consent, he had to stop the procedure and try to contact Dr. Huepenbecker, leaving me lying on the table, waiting.
     I was awake with the anesthetic wearing off and the wires extending into my arteries while the medical team attempted to contact Dr. Huepenbecker. Unfortunately, it was his day off, and when they finally did reach him, Dr. Huepenbecker agreed to the additional stent placement to hopefully avoid having to perform a bypass surgery. In retrospect, this decision resulted in over a decade of multiple diagnoses, the maximum possible physical therapy, two unnecessary back surgeries, and a maze of life threatening tests, none of which substantially or permanently improved my condition. In the years following the angioplasty in 1994, I repeatedly asked for the simple non-invasive treadmill test that revealed the problem in the first place (in 1992). My requests were repeatedly denied.
     By early 1995, my left leg pain had improved. Although the pain in my left leg had abated for a period, this period of relief proved to be illusory. By the later part of 1995 I was experiencing left leg pain again, but the doctors diagnosed the pain as Restless Leg Syndrome (RLS). They attributed the fatigue I experienced to a lack of quality sleep as a result of the RLS. While this may have been the case, the diagnosis of RLS did little to help explain the pain in my left leg.
      At this time I was also experiencing back pain, but I had suffered from back pain for most of my adult life, and it had never prevented me from walking or dancing. I had been a very active person in the years prior to 1992, when I had the first diagnosis of stenosis, so there did not seem to be a clear connection between my leg pain and my back pain. In 1996, however, when I was still having leg pains, I was sent back to Dr. Huepenbecker for another Doppler test. Since my left leg claudication had initially been detected with a treadmill test, I asked Dr. Huepenbecker for the Doppler test to be done with a treadmill. I do not know if he ordered the test with a treadmill or not – there is no record of the order in my medical records – but I was given only a resting Doppler test and it registered within the acceptable limits. Since the Doppler test did not show a problem, Dr. Huepenbecker felt that the source of my pain might stem not from my leg, but from my back. This early opinion would prove to be critically important since, in the years to come, the doctors shifted their attention from my leg pain to my back pain.
What is curious about this new consideration of my back pain is that in the subsequent years, the doctors repeatedly take note of problems related to my left leg. From 1996 to 1999, my medical documents show numerous reports of diminished or no pulses in my left leg. In my P.T. reports, my therapist noted “she drags her left leg when she walks.” In my doctors' reports they state, “She is frustrated trying to work or do any type of normal pace walking.” In fact, some doctors questioned whether the leg pain was due to claudication. These symptoms and comments all suggest something closer to the initial diagnosis of stenosis – as though the problem had not been solved in the earlier procedures.
     To complicate matters, during 1996, I began experiencing dizziness, headaches, and chirping-like noises in my head. It would be another nine years before I was diagnosed with an acoustic neuroma, but before then, I had no idea of what was wrong with me. Over this time, this tumor destroyed all of my balance nerve, and I lost my hearing in my left ear. The chirping has become a loud ringing sound that will always be with me. I will return to this later in the narrative when that diagnosis was made, but I mention this here only to give a fuller picture of the conditions that were beginning to impact all areas of life – not just in the traumatic medical experiences, but in day-to-day events. For much of my narrative, I focus on the medical side of the problems, but no picture would be complete without giving a sense of how these medical problems and the series of diagnoses impacted my life outside of the clinics.
     As I have suggested, the demands being made on me medically quickly impacted my life. My condition had deteriorated so much in the years after 1992 that my social life was a mess. I had been dancing for my whole life, and after these problems began to make it difficult for me to dance, I missed the emotional release and exhilaration of enjoying a special hobby that I did quite well. For years I had been going to Milwaukee to dance with friends there, but I had to give this up as it became too painful and difficult. I couldn't dance enough to make the trip worthwhile, which ended up isolating me from my friends in Milwaukee. I continued to attend dances around Madison for the exercise, but it was never the same. I could only dance one song, and by the second I would tell my partner I had to sit down before I started to limp. I would have to wait for the pain in my left calf to subside before I could continue again; I would do this over and over during the course of the dances.
     The difficulties the medical problems caused me overshadowed all of my relationships, not just the ones with my friends in Milwaukee. Because I did not want to overburden others with my pains, I began to avoid situations that would require others to accommodate themselves to me. For example, I avoided any involvement with male friends that might have led to a serious relationship because I felt my condition was too much to ask someone to take on. I was having too much trouble dealing with my own issues, without getting anyone close to me and sharing in my dilemma.
     I couldn't take a trip or enjoy any activity that required walking long distances. I was unable to go to simple events in Madison, such as outdoor music concerts, the Taste of Madison, or art shows with my friends or family. The thought of the many times I’d have to stop because of the pain, and the thought of having everyone feel sorry for me, was just not worth it. I knew I could not keep up and did not want to ruin anyone else’s day. I often told my family or friends to go on without me and I would be waiting for them at home when they returned.
     Looks are deceiving. By looking at me, you would never know the aches and pains I experienced, or how not being able to walk normally had taken an emotional toll on me. I looked just fine and was basically healthy, and I was not ready to be pushed around in a wheelchair. Nonetheless, I was dealing with an incredible amount of pain, both physical and non-physical. It is worth noting the cycle that these physical problems caused: the medical problems impacting my social life began to cause other emotional problems that in turn impacted my physical well-being. Much of this involved panic and stress about maintaining my career.
     I was in constant fear of losing my job that I enjoyed and needed so much. With all the medical expenses, what would I have done without my insurance? As it was, I was having trouble paying the out of pocket co-payment required by my insurance. My clients were aware of my leg problems and they knew that if we all went out for a walk at break or during our lunch hour, I would have to stop after a block and rest the calf of my left leg and continue on when the pain subsided. I was under a great amount of stress trying to function well on my job and to hold myself together. The stress from this caused symptoms of irritable bowel syndrome, acid reflux, stomach problems, anxiety and depression. I was prescribed multiple medications. Most of these mediations made me even more tired and at times unable to function normally. The side effects of the medications would at times interfere with my responsibilities at work.
     As is perhaps obvious, the added stress began causing new problems, but it also began to impact my larger medical concerns. During these years I made multiple trips to the doctors. I had a fluttering and pulling sensation in my chest. A left bundle branch block had been found in 1992 when I had the treadmill test, but it was not mentioned to me because my heart was fine. It was finally discussed with me when I had a heart catheterization in 1998, with Dr. George Bandow. It did not interfere with the function of my heart, but under stress it will vibrate and cause the pulling sensations in my chest. The new levels of stress in these years did not help this condition.

Part 1: My Trials Begin

      On the way to my first appointment at the Mayo Clinic, I was scared and exhausted, but more informed about my health than I had ever been before. As my daughter and I started out from Madison, Wisconsin, on May 3, 2007, we were both apprehensive about what would happen that day. What else would I find out? What decision would I have to make? We were both quiet as we began the four-hour drive; I put my head back on the headrest and tried to relax. My mind couldn’t stop reviewing the events that led up to this trip, the events that had taken over the last fifteen years of my life, the trauma, betrayal and unnecessary suffering, which made any kind of normal life impossible.
     

     Sitting in that car, I remembered back to 1991, when I was 52 years old and working in a sheltered workshop as a Production Supervisor for 30 clients with disabilities. In the previous 20 years I had only had a few doctors’ appointments. However, I began experiencing some difficulties, so I chose a primary doctor, Dr. Randall Haas with Dean Health Care, to evaluate my complaints. In my role as Production Supervisor I spent most of my day on my feet working with my clients on the production floor. I had begun experiencing back and left leg pain, which I felt was aggravated by working on cement floors.
     In June 1992, I was sent for a non-invasive treadmill stress test for my heart. I had experienced a fluttering in my chest and some minor pain. The test ruled out a serious heart condition, but the test did discover circulation difficulties in my left leg, which prevented enough oxygen from getting to my leg muscles. As a result of the low oxygen in my muscles, I would suffer severe pains in my left calf. The cramping that results from a lack of oxygen in the muscles is called a claudication. Because their focus had been on my heart, they were not concerned with the difficulties in my left leg. Not much was mentioned regarding the claudication, and I returned to work, where I continued to have pain for the next year, due to what I assumed was from the work floor environment.
     In June 1993, I decided to change jobs because of the pain and went to Supported Employment (within the same agency), where I would work in a state office building. I had hoped that working in a different environment would help to relieve the pain. The state office building had elevators, which spared me the extra stress of walking up and down stairs, and carpeted floors, which provide a degree of support and cushioning when walking. Yet, this did not seem to help.
     In August of 1993, I saw my primary doctor complaining of left leg pain and he sent me to a vascular doctor, Dr. Paul Huepenbecker, who ordered an angiogram of my lower extremities. In September 1993, the angiogram showed 80% blockage of the common iliac artery in my left groin area. An angioplasty was performed, inserting three sequential palmaz stents in the artery to increase blood flow. This procedure provided relief for only a few months before the pain started again.

Introduction

I write to share my medical case history, which involves nearly 15 years of misdiagnosis spanning from 1994 to 2007. Given that I underwent multiple unnecessary procedures and that doctors and administrators ignored my requests, I felt compelled to compile this history based on my experiences and on my medical records.   It took me three years to compile these records, but I felt that this was a necessary story to tell, for my sake, the sake of my family, and for the sake of other patients.  In many clinical settings, the patient has no voice; but this is a way that I feel I might be heard.  Too often, we trust those in power either because they are experts who know more than the average person, or because we hesitate to question those charged with protecting us.  I hope that this history will keep others from ever having to experience what I have experienced, and receive the help and care that they need.  I also hope that this story will encourage more patients to ask for their medical records, to ask more questions, and to stand up for themselves.