Part 11: Dr. Timmerman Still Puzzled

             When I met with Dr. Haas, my primary doctor, about the new test results, he suggested that I return to one of the vascular surgeons I had worked with earlier – Dr. Kantamneni, Dr. Huepenbecker, or Dr. DeAngeles.  I was not willing to return to these surgeons – each in his own way had contributed to the turmoil I had experienced over the last decade.  Dr. Haas's notes show that I told him that I refused to see any of the vascular surgeons that I had for the past twelve years.  Then Dr. Haas suggested I make a new connection, and recommended a vascular surgeon that I had not worked with before, Dr. Cowgill (though Dr. Cowgill had consulted on my case previously, I was not aware that he had done so).  When I met with Dr. Cowgill, I told him that I was reluctant to undergo another angiogram because it had not worked.  He was sympathetic to this and felt the test results supported this position.  In discussing my options he recommended a Fem-Fem bypass from my right side, across my abdomen, and down into my left leg, bypassing the stints.

             Thinking about Dr. Cowgill's recommendations, I was again hopeful, but with some concerns: this would be the 5th time going in on that right side.  I was told that there would be a number of certain risks, like blood clots, amputation, stroke, or even a heart attack, but I wasn’t sure what else I could do.  I hadn’t had much of a life in the past decade, but maybe I’d have a chance at some quality of life in the coming years.   Therefore, I decided to have the surgery in September of that year.  The procedure itself went well, and I healed quickly.  However, by December, when I attempted normal walking again, I was still having trouble.   I was now experiencing severe weakness in both legs.

Dr. Timmerman was puzzled by this new change, but sincerely wanted to get to the core of the problem.  He still felt strongly that it was a vascular problem.  In order to rule out other possibilities, he sent me to a new back surgeon just to make sure the problem was not in any way connected to my back. The back MRI showed no major difficulty.  The back surgeon said, “If her legs are still screaming for blood, no back surgery will help.”  Dr. Timmerman felt assured that we could rule out my back as a cause of the problem.  Dr. Timmerman and the back surgeon grew worried that it might be an aneurysm caused by the bypass surgery; aneurysms and blood clots are just some of the serious risks I was exposed to as a result of these multiple surgeries and procedures.

             Dr. Timmerman sent me back to Dr. Cowgill for testing so that the possibility of vascular claudication or an aortic aneurysm could be ruled out.  After the initial test, the aneurysm was quickly ruled out, so we only had to address the concern about vascular claudication.  When I arrived for that test, Dr. Cowgill was excited about a wonderful machine at Saint Mary’s.  He stated it would show all the vascular system from the aorta on down. When the test results came back, Dr. Cowgill was very pleased; all of my arteries seemed open.  However, I was skeptical.  After all the trials and tribulations I had endured, I did not feel comfortable putting my faith in any big, wonderful testing machines.  As I have pointed out, inaccurate tests had led me through the medical trials I have been detailing here.  All the surgeries, all the tests, and all the machines had not shown what a simple treadmill had shown.  And, I had a $175 co-pay for this testing machine.  To be on the safe side, and to relieve my own concerns, I asked Dr. Cowgill if I could please have a treadmill test, just to make sure.  The treadmill test was a fairly cheap test, and it seemed worth it to me if it could help avoid any other unforeseen difficulties. Dr. Cowgill seemed amused by my request.  I knew Dr. Cowgill was patronizing me by his smirk and I knew that he probably wouldn’t have agreed to do the treadmill if it weren’t for the other two doctors.  Sitting there underneath his patronizing gaze, I felt as if he were authorizing the test just to show me that his big wonderful machine was right. So, he agreed and scheduled the test at St. Mary's.  I wish that were the end of that feeling, but the resistance I felt from Dr. Cowgill was nothing compared to what ensued on the day of the appointment.

Part 10: Dr. Timmerman Persists

            Dr. Timmerman wanted me to see Dr. Kantamneni, the vascular surgeon I had worked with earlier.  However, I never wanted to see Kantamneni again; he was the primary vascular doctor responsible for the past results that had set me up for the unnecessary back surgeries in 2000 and 2002.  Dr. Timmerman was conscious of my concerns and reassured me: “You’re not going for surgery, so don’t be afraid. What we want is a Doppler with the treadmill test to be done.”  I made the appointment with Dr. Kantamneni, but I was afraid that Kantamneni would not honor my wishes to have the Doppler test done with the treadmill – especially since I had not been listened to at any time up to this point.  Fortunately, he did order the Doppler with treadmill testing; unfortunately, that did not mean that the test would be done. 

            When I went to St. Mary's Hospital for the Doppler with treadmill, they once again refused the treadmill test.  Of course this meant that I would go through the same round of motions that I had gone through before.  After the Doppler test (without the treadmill), I returned to Dr. Timmerman to report that I was denied the treadmill test, again, and again, the Doppler tests were stable.  Dr. Timmerman was frustrated, and told me, “Colleen, if you want a treadmill test you need to be more assertive!” Since the tests were not of any use without the treadmill test, Dr. Timmerman sent me back to Dr. Kantamneni to have another round of tests scheduled.  Dr. Timmerman had given me the confidence I needed and because I knew I had his support, I now had the guts to stand up for myself.  Thinking of Dr. Timmerman's insistence that I be more assertive, when I met with Dr. Kantamneni, I insisted on having the treadmill test included in the new round of tests.  When I told him that the treadmill had not been included in the test, Dr. Kantamneni seemed genuinely surprised.  Knowing that he had ordered the Doppler with the treadmill test, Dr. Kantamneni grew noticeably upset and left the room in search of his nurse.  I could hear him in the hallway, scolding his nurse, “I did order that test! I thought it had been done!” When the nurse came back in the room SHE seemed puzzled and frustrated.  She said to me, “But you heard me order that test, right?” I replied, “Yes, I know, but Saint Mary’s won’t do them.”  I found the exchange between the two very alarming, and thinking back over the years to test results that seemed very similar to the stable results in this round of reports, I wondered how many times the doctor's orders had been ignored, how many times the Doppler with treadmill HAD been ordered but had been disregarded in the lab.  The nurse assured me that I would get the test done as ordered this time.

            

                 Well, she was right.  For the first time since 1992, the hospital administered the Doppler test with treadmill – and the test results were very different this time!  The resting Doppler test that showed stable results within limits read 1.14R/0.84L, but the Doppler with treadmill showed a vastly different picture: 0.76R/0.25L (.50 is regarded as “Severely Low”).  I should note that even this reading is somewhat misleading. For the treadmill to be most accurate, the readings have to be done as soon as possible after the exercise.  Because she was working alone, the nurse took longer than should be the case to turn the machine off, get me back on the table, and get the cuffs on to do the reading. It seemed that the nurse was not accustomed to doing the test.   The delay allowed the blood to resume a more stable flow in my leg, which skews the readings in the same way that the resting Doppler test does.  Although this was still more indicative of my condition than the resting Doppler, it is likely that the tests results would have been even worse without the delay.  With this new reading, I felt torn in several ways: between joy that the test finally pointed to a clear problem; a sense of gratefulness that Dr. Timmerman had encouraged me to stand my ground; and a sense of rising fury that this test had not been done years earlier – whether it had been the doctor's fault or the hospital's protocol.  This would have saved me from several surgeries, the disorienting subjection of several doctors, and the degradation of my emotional and physical lifestyle, not to mention the financial cost to me and to the insurance companies.  The past decade could have been vastly different.

Part 9: Angiogram Only Temporary Relief

            The angiogram was a terrible experience.  The doctor performing my angiogram had significant difficulties.  For some reason he could not get in on the right groin area.  After repeated tries, he then began on the left.  I was scared, and I knew how risky angiograms could be with blood clots and/or other complications.  I lay on the table, semi-conscious for hours. I never said a word; I just prayed I’d live through this ordeal.  A few days after the procedure, I was black and blue on both sides from under my ribs to the middle of my thighs.  I even had my neighbor take a picture of the bruising because it seemed so abnormal. 

I saw Dr. DeAngeles a week later.  He saw the bruising, but did not mention it.  I didn’t say anything either:  I had lived through the procedure and for that I was thankful.  During this visit, Dr. DeAngeles read the report for both the Doppler test (without treadmill) and the angiogram. Since I had had the angiogram and the Doppler test done on the same day the results should have been consistent.  Dr. DeAngeles said that the results from the Doppler test read within limits. Just as it had in the previous years, the Doppler test showed that I had a good blood flow in my left leg.  However, I was told that the angiogram showed that the stents were blocked.  The surgeon's report read: “Multiple areas of recurrent stenosis in the stents.”  I was confused.  Why did the angiogram show many blockages when the Doppler test St. Mary's had performed showed the same results as in the past? If the results from the Doppler test were correct there should not have been any blockages. I didn’t get much of an answer to my questions; I just had the feeling that this doctor didn’t want to discuss my previous medical history.  In 1999, Dr. DeAngeles had been one of the doctors to convince my first back surgeon, Dr. Bogdanowicz, that my vascular system was stable in spite of Bogdanowicz’s fear that I might have had a vascular problem.

­­­­­­­­­            Before I left, Dr. DeAngeles asked me how I was walking since the surgery.  I said, “It hurt so much from the procedure I’m not able to walk far enough to know.” I guess he didn't notice or didn't want to address the fact that that I was so black and blue from the problems with the surgery.  Because I was still in so much pain from the surgery, it took several weeks for me to realize that my leg was better.  I continued PT with Dr. Timmerman and his staff.  After a month or so, I was walking a mile on the treadmill, dancing, attending concerts on the square, enjoying local events, and walking with my clients without having to stop every block. It had been over a decade, but I was beginning to get my quality of life back.

              Imagine what a terrible blow it was when a few months later the pain in my left leg came back.  In January 2005, the pain had returned and I began having the same walking problems I had had before the angiogram.   I felt that Dr. Timmerman had been the first person to really listen to me, so I did not want to direct the brunt of my anger, disappointment, and sense of futility at him.  I did my best to hide my feelings, but I kept returning to the same questions and the same dead ends: why bother to open the stents if the problem is going to return after just a few months?  Eventually these feelings came out during my appointments; in tears and filled with sadness, I sat and listened as Dr. Timmerman talked on the phone with a colleague.  I remember him saying, “I've got her as limber as some of the 30 year olds that I am working with, and she can't walk from [my office] to the parking lot!” In April, after continuing with my PT, despite the fact that my condition continued to deteriorate, Dr. Timmerman was determined to put an end to the problem once and for all.   After reading my PT reports Dr. Timmerman wrote in my records,  “I suspect she needs more aggressive treatment by vascular surgeons.”   Dr. Timmerman called Dr. DeAngeles trying to figure out why the last procedures had not had any lasting success. Shortly thereafter, Dr. Timmerman received a follow-up letter to their conversation.  Dr. DeAngeles said in quite callous, blunt terms: “There is no more that can be done for this woman.”  To be written off in such definitive terms, hurt and still hurts to this day. Not surprisingly, neither Dr. Timmerman nor I were satisfied with this, but I had become so habituated to this kind of dismissal that I was ready to give up.  Thankfully, Dr. Timmerman was not, and to his sincere efforts I attribute much of the successes that were still to come.

Part 8: Turning Point After 10 Years

To say I felt hopeless in this situation as I faced the prospect of yet another doctor and yet another round of tests and who knew what else would be a grave understatement.  However, I knew I had to follow up with Dr. Zdebilik’s advice and find a good sports doctor, because I worried that if I didn’t comply I’d be written off as an uncooperative patient.  I had been going in these circles with doctors for years with no positive results, so I felt I had better start with PT again.  My primary doctor, Dr. Haas, gave me some sports doctors’ names to pick from.  Of these, Dr. Haas said Dr. Timmerman was very good, but, he told me, I would have to wait longer to see him.

I chose Dr. Timmerman, and although I had to wait weeks for that appointment, it was the best decision I could have made.  My appointment with Dr. Timmerman was the turning point away from the traumatic experiences of the past eleven years.  Without Dr. Timmerman’s compassion and persistence, I would never have gotten to the bottom of my vascular problems.  On July 8th, 2004, I had my first visit with him.  Even without looking at my medical records and with just an exam in his office and his listening to me tell him about my past encounters, he said, “Colleen, I agree with Dr. Zdebilik.  I do not think that it is your back.  It’s a vascular problem.”   I couldn't understand how this could be.  After all the years that I had suffered, here was a doctor telling me that the problem was the very thing that all the previous doctors had ignored. I felt numb, confused, and angry, but I did not want to cry because I was afraid the doctor would think I was unstable.  I told myself that I needed this doctor and did my best to regain my composure. I told Dr. Timmerman that over the years I had had numerous Doppler tests, and the doctors kept insisting my vascular problem was stable.  Dr. Timmerman then asked me if I would go back to the vascular surgeon Dr. DeAngeles with a recommendation for another Doppler test - only this time, Dr. Timmerman requested the tests be done with a treadmill, followed by an angiogram.  During my prior visits to Dr. DeAngeles, the Doppler tests were performed at Saint Mary’s Hospital, but without the treadmill.  I had always asked for the treadmill with the Doppler test, but my requests were ignored, time and time again.  Finally, in my first examination with Dr. Timmerman, a doctor took my requests seriously.  He felt that a re-examination of the vascular system would be helpful.  He felt that given my history, a Doppler test with the treadmill and then an angiogram were in order and might offer some sense of what was causing the pain.

            It was with some joy that shortly thereafter I entered Saint Mary's Hospital to have new tests done which Dr. DeAngeles had ordered.  Imagine how disheartened I was, then, when even after Dr. Timmerman and I had discussed doing the Doppler test with the treadmill, it was again done without the treadmill.  While I was lying flat on my back, the test showed within limits 1.07R/0.86L.  According to these test results, I would not need an angiogram; nonetheless, because Dr. Timmerman had asked for an angiogram, it was done. To this day, I am frustrated about this event, and puzzled as to why they would selectively follow Dr. Timmerman's requests.  Although they ignored Dr. Timmerman's request for a Doppler test with treadmill, they decided to follow his request for an angiogram despite the fact that the Doppler test results showed that an angiogram was not necessary.

Part 7: Back Surgeon Suggests a Sports Doctor

While I was dealing with the difficulties from this tumor, my leg pain had continued.  I returned to Dr. Haas in the spring of 2004, still trying to find an answer for the pain in my leg.  Dr. Haas was frustrated with the complaints of my leg pain.  I remember that spring well.  I was 65. I remember sitting in the parking lot of a UW facility with tears streaming down my face as I read the results of the MRI recently done on my back.  I wanted a solution so badly. For years the vascular doctors had convinced me that I had a back problem that prevented me from walking a block without terrible pain in the calf of my left leg.  I had had two back surgeries that had not helped, but I wanted to walk again. I wanted to dance again.  I wanted an end to the pain. Since the vascular doctors seemed convinced that the problem stemmed from my back, I wanted to get another consultation in the dim hope that a third surgery might be the final corrective surgery.  Finally, I managed to get a referral from Dr. Haas to see Dr. Zdebilik at the UW, who was considered one of the best back surgeons in Wisconsin. 

As requested, I delivered the films from my back MRI to the UW clinic, and I was later called by the nurse, who informed me that there was NO chance to see Dr. Zdebilik.  As I expected, the nurse, not the doctor, informed me that I was not a good candidate for back surgery.   The nurse also informed me that the doctor suggested I get a good sports doctor instead.  I felt devastated. A sports doctor?  What would a sports doctor do for me, when over the last eleven years I had already had the maximum amount of physical therapy allowed by insurance, repeated Doppler tests, numerous nerve tests, and two back surgeries, and I still had the same problem as I had in 1993?