Part 6: After Two Years Brain Tumor Found

    Additionally, after my second back surgery, I began having severe problems with my balance resulting from the undiagnosed tumor.  I couldn’t walk in large areas like the mall or in stores without feeling disorientated or losing my balance.  I had to sit down when I came to escalators because the movement made me nauseous.  When I visited Dr. Kahle, my back surgeon, to talk about these problems, I asked if it was possible that fluid had drained out of my spine during surgery and whether that could be causing these symptoms.  Dr. Kahle assured me that the problem was not caused by the back surgery, but he did not offer any further idea about what might be causing the balance problems.  Instead, he prescribed me Neurontin and sent me to my primary doctor, Dr. Haas.  The side effects from the Neurontin made me feel even worse, so I was told to stop taking it.  Unable to diagnose the cause on his own, Dr. Haas referred me to an E.N.T. doctor, Dr. Feeley.  In the course of the next two years, I was given CAT scans and other tests, none of which located the problem. All this time, I staggered when I walked up or down steep driveways or up stairs.  I lost my balance at work, often grabbing onto anything close for support.  Sometimes my clients had to steady me.  I often walked close to the walls so I could reach out for balance, but I feared people at work would see me bouncing off the walls and think I had a drinking problem. 

            As the problems continued to worsen, and with no real cause for my condition discovered, the doctors continued to prescribe different medicines.  Dr. Haas prescribed Meclazine – it didn’t help.  I was even put on Prozac. The Neurontin had made my condition worse, but the Prozac made the problem intolerable. I thought I was losing my mind; at one point, I begged Dr. Feeley to put drainage tubs in my ears to release the pressure.  He finally agreed to the procedure, but of course it didn’t help.  I had very few appointments in 2003, but they were all related to these ear problems. For two years I complained about the pressure in my ears, and for two years I was rudely told, “there is nothing in your ear.”

            As I mentioned, the doctors had shuttled me through barrage after barrage of tests, and prescribed pill after pill, but they had neglected to administer the one test that would reveal the problem.    I had all the symptoms of a brain tumor during those two years: constant, loud ringing in my left ear; a loss of hearing on the left side; and a terrible, disorienting balance problem.  Despite all of these symptoms, it wasn’t until June 1, 2004, when I finally received an MRI with contrast, that an acoustic neuroma, a type of brain tumor, was found.  As a result of the tumor, I lost the hearing in my left ear, the balance nerve was completely destroyed, and I will continue to live with a constant ringing.  When I was told about the tumor my doctors presented it in a joking manner:  “Oh, now we know what was causing your head problems.”  The doctors displayed no compassion for the two years of misdiagnosis, the series of tests, or the variety of pills to which I had been subjected.

I was finally sent to a brain surgeon at UW-Hospital, Dr. Pyle.  He did not recommend brain surgery because it was too risky to operate where the tumor was located, plus my age was a factor.  It would have been a ten-hour surgery.  Fortunately, the tumor had stopped growing, and with physical therapy the right side would compensate for the balance difficulty. Had I been diagnosed earlier, when the problems began in 2002, the therapy would have helped so much. 

Coming soon Part 7

Part 5: 2nd Back Surgery Questioned by Backsurgeon

I continued with my PT throughout this time period. Whether it was working with a specialist, walking in a lap pool, or doing my best to keep up with my peers while walking at the senior center, nothing seemed to ease the recurrent pain in my left leg.  The doctor's notes from this period show little activity but reflect one continued complaint: the pain in my left leg had continued, if not grown worse.  By June 7, 2001, I was sent for consultation to another back surgeon, Dr. Kahle.  He too questioned whether the pain was not caused by a vascular issue rather than by a back problem.  He consulted with Dr. Huepenbecker and once again it was concluded that my vascular problem was stable.  While this should have been ground for reassurance, this marked the beginning of the second round of tests and consultations that would result in a second back surgery.

            Like before, I was sent from one test to the next, and like before, the doctors debated back and forth as to whether the problem was in fact caused by a vascular condition. Like before, the same doctor's noted the same observations that suggested the problem was vascular, and like before, they decided the pain stemmed from a back problem.  Consequently, on January 8, 2002, Dr. Kahle sent me to Dr. Kantamneni for a second opinion.  In Dr. Kantamneni’s report he wrote, “No palpable pulses in the foot on the left side.  Patient complains of weakness when she walks about two blocks.”  As had happened in 1999, he sent me for a Doppler test, and despite my request that it be done with the treadmill, I was administered the resting Doppler test. And like before, the resting test results were within limits.  Perhaps most curious about the repetition of this process is that after reading the report, another vascular doctor, Dr. Cowgill, made the same observation as had been made in 1999 by Dr. DeAngeles, that the “Duplex suggests stenosis of left iliac system.” Here, as before, the suggestion is that there is a vascular problem, yet when Dr. Kantamneni read the report, he assured Dr. Kahle, the back surgeon, that there was no concern of a vascular problem and that we should proceed with another back surgery.  As before, this whole process could have been avoided had the Doppler test been administered with the treadmill, but it was not.  Because the treadmill had not been administered, the test results did not detect the problem that was causing the pain in my left leg.  Had the treadmill been administered, the test results that read within limits would have changed drastically, as became painfully clear three years later when I was finally administered a treadmill test.  I will return to this later, when I was finally administered the treadmill test. 

I was then scheduled for the second back surgery on February 13, 2002.  Dr. Kahle had Dr. Huepenbecker assist along with another doctor, Dr. DeCook.   Dr. Huepenbecker was the vascular doctor who had questioned the second stent placement in 1994 and had been originally concerned that my problem was vascular.  However, he had decided, based on the resting Doppler results and not on my symptoms, that it was a back problem instead and was now assisting with the second back surgery. 

Unlike the previous surgery, this surgery would not go smoothly and would cause later complications.  A seven-inch incision was made on my left side, extending from under my rib cage to below my hipbones, so that Dr. Kahle could insert two cages in my lower spine.  The cages had to be constructed from my own bones, so another incision was made in my left hip in order to remove bone that would be placed in the cages.  Dr. Huepenbecker helped Dr. DeCook to remove the bone from my left hip.  In the course of removing the bone from my left hip, they ran into the stents.  Even now, I am left wondering why they did not foresee the problem those stents might have caused. In the record from the surgery, Dr. Huepenbecker wrote, “Dissection was difficult, however, at the iliac vein as the patient previously had a left iliac artery stent placed.  This created a fair amount of inflammation which required some careful dissection to fully separate from the vein itself.”  I do not understand why they did not communicate about the stents, as Dr. Huepenbecker should have been familiar with my case and with the issues these stents could cause. 

While they finally found a solution, this seemingly avoidable complication was not without residual problems of its own.  I have been numb on my left side from my hip to my knee with pain from nerve damage ever since.  This has gotten worse over the years and continues to worsen.  Also, I have a large bulge on my left side from where the internal lining was not adequately stitched while closing the surgery.  Sadly, even after this second back surgery, there was no change in my leg pain, but this would not be the end of the problems that surfaced during this period or the end of the doctors' misdirection and misdiagnosis of my conditions. 

Part 4: Surgery Does Not Help the Leg Pain

It was January 19, 2000, when I had the back surgery.  By February 16, 2000, about four weeks after the surgery, I was back to work.  Even though I was weak and moving very slowly, I had used all of my sick and vacation time, and I could not afford to be out of work without pay.  Working with my disabled clients helped me cope emotionally.  My clients had to deal with their own serious disabilities on a daily basis. They understood my limitations and I fit right in with them.

I believe I had more empathy and patience with my clients due to my own problems.  I did not expect to be moving normally after the surgery, so I did my best to cover up how I was feeling.  I concentrated on holding on to my job and merely existed.

By April, I went for a check up with Dr. Bogdanowicz.  He was still left with the impression that there was, as he wrote in his notes, “still some component of vascular neuropathy to her problem.” In the months that followed, after I was recovered and able to walk fairly normally without risking any strain to my back, I began to experience pains in my left leg once again.  After my back surgery, Dr. Bogdanowicz had ordered me to begin working closely with a Physical Therapist (PT).  In one of the PT's reports, there is a notice of “pains radiating down [my] left leg through the calf with walking.”  The PT also noted that there is “no endurance in her left leg and no strength walking grades.”  Months after performing the back surgery, Dr. Bogdanowicz still felt like the problem was likely caused by a vascular problem, and my PTs took note of the same problems that I had been reporting for years.   I mention these observations here because they became increasingly important in the subsequent year.  Rather than taking these indicators as a sign that there was a different strategy needed, and that the back surgery was not the solution, starting in June of 2001 I was sent back through the same cycle of consultations and tests and, eventually, into another back surgery.

To give a fuller picture of the disorienting effect of my experience in this second round of tests, which led to that subsequent surgery, let me provide some further context for my medical visits at this time.  I hope that this will give a sense of the maze that I was walking around in, from one doctor to the next.  In November, I began more acutely experiencing the symptoms in my ear that I had starting having back in 1996. My medical records show that I had been mentioning intermittent head-aches, dizzy spells, ringing, light headedness, and shooting pains in my left ear.  On January 17, 2001, I was seen because I had lost my balance getting out of my car, slipped and injured my left shoulder. Over the years I had never experienced balance problems or any clumsiness.  As a dancer, I had always been graceful on my feet, so this fall really surprised me.  I just attributed it to getting older, but it soon became evident that this fall may have been caused by a new condition – as noted above, a growing acoustic neuroma that was finally diagnosed in 2004.

      I continued with my PT throughout this time period. Whether it was working with a specialist, walking in a lap pool, or doing my best to keep up with my peers while walking at the senior center, nothing seemed to ease the recurrent pain in my left leg.  The doctor's notes from this period show little activity but reflect one continued complaint: the pain in my left leg had continued, if not grown worse.  By June 7, 2001, I was sent for consultation to another back surgeon, Dr. Kahle.  He too questioned whether the pain was not caused by a vascular issue rather than by a back problem.  He consulted with Dr. Huepenbecker and once again it was concluded that my vascular problem was stable.  While this should have been ground for reassurance, this marked the beginning of the second round of tests and consultations that would result in a second back surgery.

Part 3: Back Surgeon Questions Vascular Problems

    In August of 1999, I saw Dr. Huepenbecker again because I was still having severe leg pain. He ordered a new Doppler test. As I had done in 1996, I asked that it be done with the treadmill, and I thought he had agreed. At St. Mary’s, however, I was told that if the resting Doppler was normal it was not necessary to do the treadmill. The resting Doppler readings were within normal limits, so with those results Dr. Huepenbecker definitively states, "focus on her back." The Doppler read 1.22 R / 0.98L. Little did I know then within the next five years, up until 2004, this resting Doppler would read about the same whenever they did this test, but when in late 2004 they finally gave me the Doppler with treadmill that I had asked for on multiple occasions, it would drop to -0.76 R to 0.25L.
     In the late 1990s, however, I wasn't challenging my doctors. I wasn't getting or reading my medical reports. I trusted Dr. Huepenbecker, and since he was convinced that my back could be causing the leg pain, I was convinced of the same. At Dr. Huepenbecker's recommendation to focus on my back, my primary caregiver sent me to a back surgeon. At the thought of finally getting at the source of my leg pain, I was hopeful once again that I might get my quality of life back.


On September 23, 1999, I was sent to a back surgeon, Dr. Bogdanowicz. He was reluctant at first to recommend back surgery from looking at my CAT or MRI scan. To really illustrate the concerns that Dr. Bogdanowicz had about performing back surgery on me, I want to draw heavily from the doctors' notes in my medical records. I feel the dialogue between the doctors' notes is illustrative of and testifies to the uncertain position and miscommunication between the doctors that led up to my back surgery. Yes, there were long standing back problems, but Dr. Bogdanowicz voiced severe concerns about proceeding with the surgery when he wrote on September 27, 1999:

 After walking a short distance or dancing one song she develops pain and weakness especially of her left leg- and this is the leg the stents are in. I want to discuss this situation with Dr. Huepenbecker to make sure he is absolutely, positively sure it is not a vascular problem and the vessel is OK. I do not want to put this woman through a surgical procedure when we need to put her on a tower table which might further compress her left iliac artery and stint and cause significant trouble. I need to be reassured that the vascular problem is open and clear.

     His notes from October show a similar concern that the problem might be vascular. On October 7, 1999, Dr. Bogdanowicz reiterated the degree of his concern about the back surgery. He wrote:

I touched the area over the stent and she winced, because of the severity of pain there. I really think that we should examine it carefully before we decide about back surgery. There is a strong family history of vascular disease and we know she has it because she was already treated. The very important question is, and the patient is very adamant about it, and I absolutely agree, is that before we touch the back, we should know absolutely for sure that most of the symptoms are coming from her back and not the vascular problem. If Dr. Kantamneni clears her, the next step would be to consider back surgery.

     In order to address his concerns that the problem might have stemmed from a vascular problem and might not be attributable to a back problem, Dr. Bogdanowicz suggested another Doppler test and requested that I go see Dr. Kantamneni. During the appointment with Dr. Kantamneni I asked him specifically that a treadmill test be included in the new Doppler test, and I asked again when I arrived at St. Mary’s for the test later that month. The nurses told me again that the treadmill was not “procedure” for the test if the resting reading was within limits. After the test, Dr. DeAngeles read the report. Even though the results showed a stable vascular supply when I was at rest, Dr. DeAngeles' impression was that, as he wrote, “vascular evaluation and/or arteriographic evaluation could certainly be supported based upon this study.” Interestingly, despite the resting test results, Dr. DeAngeles' impression was that my vascular condition warranted further investigation.
     When I met Dr. Kantamneni, my vascular surgeon, a week later, Kantamneni seemed to express no concern for or need to follow up on Dr. DeAngeles' report. In his notes from October 26, 1999, Kantamneni writes, “I have reassured the patient that she has good vascular supply.” This seems even more curious when it becomes evident that there was in fact something of concern to him in his examination. In his notes from the examination he writes “her popliteal arteries are difficult to palpate. She is absent dorsalis pedis on the left.” Dr. Kantamneni 's report, though, seems like it was unsatisfactory to Dr. Bogdanowicz. In Dr. Bogdanowicz's report from the following day, October 27, 1999, he still expressed concern about whether the problem was vascular related. On December 17, 1999, he wrote, “Dr. Kantamneni felt that the patient had a good vascular supply.” He himself did not feel confident that the problem was not vascular; rather he only notes that Dr. Kantamneni felt that I had a good vascular supply – this despite his own opinion and the opinion of Dr. DeAngeles!
     His uncertainty about the test results, the decision to proceed with the back surgery, and whether the back surgery would actually address the problems, persisted. Before the back surgery, Dr. Bogdanowicz said to me: “I guess we will trust the vascular doctors that your arteries are open and clear.” When he said that we would simply have to “trust” the vascular doctors, he did not seem too confident in the decision.