Chapter 20: Surgery is a success at Mayo

I thought about those who weren’t as lucky to survive, with their families never getting the records, believing that their loved one just had complications during their procedures.  I wanted to encourage other patients to get their records, to be more assertive, and to ask questions.  Everyone was talking about health care reform.  My question was, why create another system before changing the present one, where the patient has no voice or recourse for what they have been put through?  When the Dean Administration gave me no alternative, or even personal attention to my complaint, I decided to see the counselor that was recommended, even though I felt that she would be helpless to answer these questions.  

The counselor I saw was very patient.  She listened to my story for more than an hour.  Her response was, “Colleen, you understand what has happened to you.  I don’t believe you need a diagnosis of emotional instability to add to your medical history.  My suggestion is that you take your records and write a complete history of what has happened to you.”  I was relieved that this doctor was not looking for another patient.  She never even charged me for the 1. 5 hours, knowing she would have to diagnose me as having a mental health issue if she did.  She assured me that if I ever wanted to return, she would be there for me, and she wanted me to let her know how my life proceeded.  I left the counselor feeling relieved, yet troubled and overwhelmed by the thought of writing.  I had written an outline of my medical history before, but this was different because I would be writing about my feelings and experiences.  I pondered it for a few months and her suggestion gnawed at me until I knew I needed to try putting my story together. 

This was a very emotional task for me.  I also felt intimidated because I was not an English major, and additionally, I wondered if these things might not have happened to me if I had been more educated in the first place.  However, I was determined to proceed and hopefully have my family understand all the events that took so much of their time and energy.  Maybe it would even help someone else from going through a similar experience.  It took me months, a little at a time, page by page, to read my records again, taking notes and trying to include my feelings.  When I finished, I had 20 or more pages written, but I knew I needed help to better express my story.  I couldn’t afford a professional writer, but the senior center had a writing assistance program.  I started, but I only went a few times.  It was primarily for funny or very short stories.  Mine was just too long and complicated to even bring up in these sessions.   I then learned about the writing assistance at one of the public libraries.  This was the turning point in my crusade and one of the best experiences of my life.  The writing assistance was better than any kind of counseling I could have received.  The empathy, interest, and concern these writing assistants had made all of what I had been through worth getting written.  Time was limited each week, sometimes only a half hour, but I never missed a session.  I have them to thank for not just their writing but for their compassion, which gave me back my self-esteem.  I want to thank my friend Kay Hiller, Ileana Rodriguez, and those people who helped with the writing of this history: A.B. Orlik, Mark Estante, Rebecca Lorimer, Beth Godbee, Michael Dimmick, Kim Moreland, Annie Massa-MacLeod, and Rob McAlear. 

As for my physical health, the risks of the surgeries I had were serious, and I was lucky that I was healthy enough to survive.   Almost a year after my surgery at the Mayo Clinic, I was delighted that I could walk any distance without the left leg pain I had experienced for so many years, but I knew that I would never have had that drastic surgery if my condition would have been dealt with 10 years earlier.  Now, it has been 3 years since I had my surgery, and I still have not had any pain in the calf of my left leg.  I will continue to work with Mayo Clinic if other complications arise, particularly related to scar tissue and nerve damage from surgeries.  I have reminders of other surgeries and other pain, but not in the calf – and unlike the calf, those things don’t stop me from walking.  Despite those other daily pains, nerve damage, and scar tissue, I can go to concerts, do things with friends, and most importantly, I can dance again. 

If you should read Dr. Gloviczki’s report to my primary doctor after my surgery, you will see how thoroughly they reviewed my past history.  Every time I see Dr. Gloviczki, I am so filled with gratitude that I want to hug him.  The care I received at the Mayo Clinic is the type of care that every patient should receive, without weeks, months, and years of waiting.  People linger in medical systems that do not offer them solutions for far too long – and sometimes it is too late. 

I hope that this story enlightens not only my family, but other patients in the future.  It is easy for a patient to give up when they feel like no one is listening.  When we are violated, we feel powerless to do anything and we often accept it, an acquiescence that enables further abuse.  We need to be more aware of what happens to us in the medical system and be willing to share our stories.  There are many good doctors out there, and hopefully they will listen to our stories.  Maybe there will be doctors with a little bit of Dr. Timmerman inside of them hears our stories, and they will try to change or make a difference in the system. 

Chapter 19: Survived the Surgery

      I was surprised when I woke up after the surgery.  Knowing I had survived the operation, my family was smiling with tears of joy.  I knew I had a chance.  The whole panel of doctors visited me in the hospital and the room was full.  I felt like I was on the television series, House, because I was getting so much attention, and all of the doctors were communicating with each other, all knowledgeable about my case.  I learned that even though Dr. Gloviczki had trouble getting the artery inserted on my left side due to the mess left behind by my second back surgery, he did succeed.  I was lucky he succeeded, but if it hadn’t been for repeated misdiagnoses, this drastic surgery would not have been necessary.
      When I returned home on 5/27/2007, I had a lot of healing to do before I would be able to walk enough to see if the surgery had made a difference.  The weeks went by and I became stronger.  The patient advocates at the UW visited me several times during these weeks.  There had been no response from the Dean Administration regarding my written complaint in May of 2006.  The advocacy staff at the Center for Patient Partnerships felt that my original complaint to the Dean Administration was too passive and should be resubmitted.  They filled out another complaint form for me and they submitted it with my approval.  The complaint requested that Dean send pertinent meeting minutes and outcomes.  After two weeks, there was no response.  The advocacy staff called the Dean Administration to inquire, and they were told the letter must have been lost.  I re-delivered the complaint form again and then received a letter, 4 months later, on Sept. 19, 2007 (and over a year since my original complaint), stating that the request would not be honored.  I was to trust the administration to look into the matter.
     This was devastating for me to accept.  I had been through so much and suffered for so many years, and yet I still did not have a voice in the system.  If I had been violated in any other respect in our society, I would have had other avenues to pursue or other options to recover my rights, but when it came to the system of doctors and administrators who were responsible for my care, I had reached a dead end.  The Patient Advocate staff felt maybe I should seek out a counselor to give me support and guidance regarding the emotional trauma and the feeling of having been physically violated so many times over the years.  I had so many questions – was it the doctors who didn’t pay attention, or didn’t they care?  Was it for the insurance money?  Was I just given unnecessary tests and surgeries because I was healthy and could possibly survive – or if I didn’t survive, would there be consequences for these doctors anyway?

A First Visit to Mayo in a Wheelchair

At that first appointment at Mayo, I had all of these events clear in my mind in order to be able to relay them to the doctors.  As my daughter and I pulled into the lot, we found a handicapped space close to the area of the elevators.  We got out of our car and followed the signs.  It was only a very short distance to get us to the underground walkway, which would get me to my first appointment.  The walkway was huge and very long, at least for me.  When we got almost halfway to my destination, I had to stop, sit on a bench, because my left calf was hurting me more than ever.  I couldn’t take another step.  The expression on my daughter’s face and in her eyes was sad.  I believe this was the first time she had seen her mom experience such pain.  When I had been with her at other times I would stop before it hurt this much.  I was really pushing myself today, just wanting to get to that appointment.  My daughter said, “Mom I’m going back to where we came in and get a wheelchair.”  It wasn’t far and I knew she would be back before my leg recovered.  I was giving into the wheelchair because I didn’t want to be in such pain when I got to the receptionist’s desk, even if it was humbling.  I was so healthy in many respects and my pain didn't show in my appearance - I still looked good for my age despite the many years of pain that I had already been through.

            That afternoon, I had an angiogram of my heart, blood test, and a meeting with a cardiac doctor to report my history, turn in all my records, and medical reports.  I had a nice letter written by the Patient Partnership Program at the UW explaining the difficulties I’d had with confusing diagnoses and medical treatment.  I wasn’t sure that the letter, along with the outline I made of my records, would be read by any of the doctors.  After a long appointment, being interviewed by a cardiologist and reviewing my entire medical history, I was sent for the test I had so often asked for in the other systems, ‘the tell-all tread mill test.’  There were two nurses getting it started.  They took all of my vitals with blood pressure cuffs on my arms and legs.  At rest the Doppler test looked pretty good.  “Of course it is,” I replied.  I always said, “I don’t have trouble in my recliner or in my bed.  I have trouble walking to here and the parking lot.”  These nurses were listening and professional, and they never made me feel that what I was telling them about my past was unimportant.  When it was time for the treadmill another nurse came in.  I was joking with them asking, “What do you think all three of you are going to do with me?”  One smiled and said, “I’m just going to watch so you don’t fall on your face, get flushed, or show extreme pain.”  This was all so different from the other two systems, where there was only one nurse doing the test who did not show much regard for my opinions. 

The protocol for the time on the treadmill was only 5 minutes.   At a fast walking pace I knew wasn’t going to make five minutes.  I was right: I only went three minutes before I just couldn’t stand the pain any longer.  The nurses had me off the treadmill, on to the table with blood pressure cuffs on in record time.  This too was different than any other test I’d ever had.  These nurses were now aware of my problem.  They didn’t offer a reading, but did let me know that I had a very serious problem.  Each one of these nurses either held my hand, or patted my leg, and they were wishing me good luck on whatever came next.  They were so sincere that I wanted to cry with tears of relief for having someone show empathy.  I already knew I had a serious problem, but the care and concern they showed was new to me.   

By 2:00 p.m. that afternoon I saw Dr. Peter Gloviczki for surgical consultation.  He had all the test results of that day.  Again, this experience at Mayo was very different in that I didn’t have to wait weeks to get the results.  The treadmill test was very bad in both legs.  It revealed I had serious blockage in both legs, no doubt on the right side from all the other procedures, especially the recent blood clot surgery.  Dr. Gloviczki and his colleagues talked to both my daughter and me.  He reviewed each test that had been done and the results with us.  In Dr. Gloviczki’s opinion, the only solution that I had was to have a very serious surgery - an aorta-femoral bypass.  This would include attaching at the aorta just between the rib cage and putting in artificial arteries down both sides, attaching to the crossover bypass that was across my abdomen.  The artificial artery in my abdomen that had been inserted only last year during my fem-fem bypass performed by Dr. Cowgill might need to be replaced.  It was explained that if there was a blockage, the blood just lies there and begins to coagulate and re-block.

Part 16: Advocates Write Letter to Mayo Clinic

I went back to the UW, to Dr. Stone, who had ordered my heart catheterization in December 2006.  I returned to him because based on our previous interaction, I liked him and I thought he might listen to me. I wanted to speak up and tell him how upset I was.  We had an appointment on January 29, 2007, and I told him that in spite of my request not to go in on that right side during the catheterization, it had been done anyway.  I was surprised that Dr. Stone did put my complaint in his report.  Many of my complaints in the past years had not been included in my records. 

He then suggested an exercise program to help force the blood to the left leg, now that other occlusions were supposed to be open.  I agreed and went for physical therapy.  The physical therapist, a likable young woman, was surprised that all I could walk was less than 3 minutes and only 675 feet before the left leg pain started.  She set up the walking program for 4-6 weeks.  I was to walk until my leg hurt, and then to stop and repeat several times.  I was supposed to dance as much as I could – do anything that would force blood to my left leg.  This was a disaster.  I did everything I was told, and in just a few days I was worse, walking only 2 minutes before horrible pain.  I had to wait three times as long for my leg to recover than what it took me to walk.  It was the same as in all of those years before.  I then made the phone call to report what was happening.  I was told to stop the exercising, as it was not supposed to get worse.  There was something else going on. 

I was panic- stricken and afraid, but I wasn’t ready to give up.  I was so healthy otherwise, that I thought that somehow there would be someone who could do something for me so that I could live a full life and walk without pain and fear.  I didn’t want any more mix-ups, and I wanted someone paying close attention to my records.  I believed that so many of the errors that had been made in my case occurred because several of the doctors, both at Dean and UW, were not reviewing my records carefully.  I had another big decision to make: do I stay with this system or seek out another opinion before I lose a leg or worse?  I was aware of good reports about Mayo Clinic and I remembered my sister, and that they had recommended Dr. Acher for the surgery she had needed.  I knew that people with significant problems had good results after visiting the Mayo Clinic and that they were known for their excellence in care. 

At this time, I was still receiving phone calls from the nice lady with P.U.L.S.E. in New York.  The Center for Patient Partnerships at the UW was following me through all of this as well, and the Patient Advocate went with me on 3/20/07 to my primary, Dr. Haas at Dean.  Even though I was not involved with Dean he was glad to see me and pleased that I had some trust in him.  He called for the referral to Mayo.  The referral out of the Dean System had been denied twice before.  This time it was accepted because I no longer had Dean Insurance.  He called the Mayo Clinic and made an appointment.  It would not be until May 3, 2007. 

Part 15: Emergency: Now there's a blood clot

I had lived through the procedure and so I thought I was doing okay.  I was sent home in a few hours.  I cringe when I think how lucky I had been, to be smart enough to make an appointment with Dr. Acher for three days after the catheterization.  That following Thursday, 12/21/06 (Christmas being on Monday), I was almost sent home by Dr. Acher until I said, “But why are my legs so much worse?”  I could barely walk into the building.  He said, “Maybe we should get another test or two.  I’ll see if the Doppler person is still here.  It’s so close to Christmas, people are leaving early.”  Again, I was lucky the guy was there.  When he was doing the test, he jumped up, almost knocking his chair over in his rush to get to the doorway, and yelled down the hall, “Dr. Acher, don’t leave, she has a blood clot!”  Now it was an emergency.   Dr. Acher told me that I needed to get to the hospital right away. 

Because Dr. Acher was scheduled for an airplane flight to go on a skiing trip, he couldn’t do the surgery.  Before I left for the hospital, he introduced me to Dr. Mell, his colleague.  Dr. Acher assured me I would be in good hands in spite of my worries about how serious this could be with all the other times that right side had been traumatized.  I wanted Dr. Acher to do the surgery so badly, however, I needed to have the surgery right away and could not wait for him to return.  I agreed to get to the hospital to get the pre-op done that night and the next morning.  On the way to the hospital, I prayed that the blood clot would not cut loose and travel down into my leg.  I knew I was at risk to lose my leg or worse.  I told my three kids what was going on, but I didn’t want to tell them how scared I was.  We prayed that God would spare me, putting our trust in Him, and asked that whatever was to happen that we would have the courage and strength to deal with it. 

That night and the next morning I had all the pre-op tests.  The surgery was scheduled for noon on December 22, 2006.  I was getting smarter now about setting my brain on important details, by paying more attention to times and events.  Just before surgery, I already had the IV in my arm, and the attendant told me, “Dr. Mell is right on time, he’s waiting for us.”  I looked at the clock; it was now five minutes to twelve.  As I was rolled out of the cubicle on my way to the operating room, I knew I was going under, and I do not remember getting to the operating room.  The next thing I remember was waking up to a conscious level when my bed hit the doorframe to my private room.  I looked at the clock; it was now 5 minutes after seven.  My brain was set on the last thing I remembered, seeing noon on the clock.  I knew I had been out for 7 hours, never remembering the recovery room.

Despite my previous surgeries and the pain I had suffered, that night was the worst I had been through.  I had sent my family home because I had spent many hours in my life sitting with people, waiting for them to either recover or die, and I knew how long those hours were.  I didn’t want my kids watching me when they were helpless and unable to do anything for me.  The night seemed endless and I felt terrible.  I believe it was all those hours of being unconscious and the effects of sedation, but I just wanted the pain to stop and to be at peace.  I knew I was older and these surgeries were taking a toll, not just physically, but emotionally, too. 

Two days later, I was feeling that I shouldn’t be sent home so soon, but I wanted to get out of that hospital.  I had a wonderful neighbor to check on me during the day until my son got home from work.  What would I have done without my son John?  He moved in with me to help in 2000 when I was having my first back surgery.  I thought the stigma of living with his mom bothered him, but he never complained.  It’s just that after the first back surgery, the procedures never stopped, and I don’t believe that he dared to leave me.  Even though he was working two jobs, he was still there at night and on weekends.  I wasn’t completely alone.  My other two children, Diane and Steve, and their significant others, were always there when I needed them, assisting continually with housework and yard work.  Without their help, I would not have been able to remain in my house.

On December 28, 2006, I returned to Dr. Mell.  I still felt terrible and I didn’t have a clue if the surgery had been successful or not.  Dr. Mell wrote that I was on track for six days post-op.  By January, I wasn’t feeling things were on track.   I was planning on returning to Dr. Timmerman, even though he was with Dean, because I trusted him.  I was devastated when I received a letter from Dr. Timmerman stating that he was also leaving Dean and moving to Spring Green to open a practice there. His letter to me explained that he was not allowed to see former patients from Dean. 

On January 18, 2007, I saw Dr. Mell again. I reported how limited my walking was, and asked if I could have a treadmill test.  Dr. Mell was very defensive, and I felt he was extremely rude.  He told me, “I won’t order any more tests for you with the results I have on the Dopplers and other tests.”  I was stuck; I couldn’t go back to Dr. Acher now.  I did not feel that he would go against his colleague, and besides, I felt that the UW was protecting the Dean system, as the UW doctors seemed reluctant to talk about what had happened to me in the past. Given my past experience, I felt that doctors wouldn’t speak against other doctors, in spite of the misery of their patient.  Only a Dr. Timmerman would jeopardize his position to stick up for me, and Dr. Timmerman was gone. 

Part 14: Get Records, Change Insurance

 I then made the decision to get my medical records.  It took me two weeks to filter through a folder that made me look like a severely sick maniac.  I only had a few doctor’s appointments in the 20 years prior to 1993.  And now, looking at these records made me sick, because I saw all of the times that I had been put at risk, while I had trusted the doctors to be in control of my health and my life.  Getting my records gave me a better understanding of what had happened to me – why my social life had been such a disaster all those years, all the money I had spent on co-pays, and all of the frustration and fear.  The file was a foot thick and didn’t even include hospital or test reports.  As I sifted through the pounds of paper, making an outline, I highlighted all of the times my leg pain was mentioned, all the times pulses were not heard in my left leg, and the many times doctors suspected claudication.  I also saw another time that Dr. Cowgill mentioned completing a physical exam that had not been done, this one dated 4/19/06.   This was a fairly recent appointment, only a few weeks before the exam he supposedly did on 5/31/06, so I vividly remembered the dates.  I then called Jacquelyn Wineke again and this time filled out a written complaint report and asked again for a referral to Dr. Acher at the UW.  After several weeks, this was also denied. 

I then made a decision to leave Dean Health Plan and get other insurance. Because I had lost my job due to budget cuts, it gave me the opportunity to change my health care provider.  I would have to wait for a few months, but maybe it would save my life, considering how things had been going.  I had conducted research on which health care provider would allow me to switch doctors based on my condition and their expertise.  Hopefully, this would prevent me from being shuffled between doctors within the same system, as well as subjected to decisions influenced by professional and corporate concerns.

In the meantime, I didn’t want any more mistakes to be made by doctors as a result of miscommunication and I wanted to have a clear document explaining my history.  I picked up the phone one day and called a writer, A.B. Orlick, to help me put my outline together.  She was so concerned that she began searching the Internet to find resources for me.  She called an agency in New York, P.U.L.S.E., which helps make a difference for patients who have had bad experiences with the health care system.  I spoke with Ilene Corina, who called me and then called the Center for Patient Partnerships at UW-Madison.  They got in touch with me and were willing to follow me through the medical system. 

I got my insurance changed to Physician’s Mutual in August of 2006.  I had to wait for almost 3 months to get to Dr. Acher, the vascular surgeon at the UW Hospital.  He ordered an MR angiogram and an exercise PVR exam.  Dr. Acher feared a heart problem and said, “I won’t touch her until I have a heart catheterization in order to exclude a major heart condition.”  He was considering an aorta-femoral bi-femoral bypass, if there were no other cardiac concerns.  Dr. Stone at the UW ordered the catheterization.  I specifically asked that they not go in on the right groin area, explaining that there was bad trouble there.  Recalling the last angiogram with the bruising, I told them that the surgeon was not able to get in on that right side.  Again at the hospital just before the catheterization, I made this request again.  The young doctor I spoke with just said, “You’re slim and healthy - you will be a piece of cake, easiest one today.”  This made me nervous, but as the head of the vascular department, Dr. Georgio Gamelli, was to do my procedure, I decided not to worry.

I wasn’t awake for the first part, so it may have been Dr. Gamelli who performed the heart catheterization.  However, I was awake for the last part of it, and I was horrified to realize that it was the younger doctor who was working on me.  He told me that the heart catheterization was finished and only the leg procedure was left.  I lay there, knowing it was that young kid I had talked to, the one who had seemed unconcerned about what I had told him about the right groin area.  It wasn’t until the end of the procedure that the older doctor came in to check.  

Part 13: Timmerman Referred Me to Patient Advocate

        I was concerned with this new angiogram – to be fair; I was scared after being left black and blue on both sides during the last angiogram in 2004.  In spite of my apprehension though, I did meet with Dr. Cowgill.  When we met I requested that he be present during the procedure.  He didn't seem too pleased with the request, and, frowning, said, “That isn't really protocol – You wouldn't want me doing your angiogram!”   His reluctance to be there and his standoffish comments left me disheartened.  I hadn't asked him to perform the angiogram; I simply wanted him present in case anything went as terribly wrong as it had during the last angiogram.  By this point I had grown desperate. I wanted my doctors to take some accountability for the decisions they made.  I had simply tried to communicate my anxiety to my doctor. I wanted so badly to talk to someone about this, and to have somebody listen and answer my concerns.  That had not happened.  I would later learn that Dr. Cowgill had written in his notes from this meeting that I “seemed ambivalent about the procedure.”  Up to this point, my records do not really show any ambivalence on my part.  I had begun to question more actively what my doctors were recommending for me and what that meant for my life.  It had all become so crazy, and the more I thought about it, the more I realized how many times my life had been put at risk by these vascular doctors.  I wanted to talk to someone that I felt might listen to me, and I decided I needed to get out of the Dean system in order to trust that my doctors had my best interests in mind.  After conferring with Dr. Timmerman, he referred me to patient advocate Jacquelyn Wineke.  I went to see her, and she reassured me that she would look into my history and complaints and help me to get a referral outside of the Dean system.
       I then went to my primary doctor, Dr. Haas, asking for a referral outside the Dean system.  I specifically asked Dr. Haas to make the referral to a Dr. Acher at UW hospital.  I knew of Dr. Acher because he had operated on my sister after she had been referred to the Mayo Clinic and they in turn referred her to Dr. Acher, saying that he was one of the best surgeons to provide the type of surgery that she needed.  She had also had blocked blood flow, and the same vascular surgeon, Dr. Kantamneni, who I had also seen many times, treated her.  Dr. Acher had performed surgery on her; he had been forthright, sincere, dedicated, and stood by her side for hours throughout her surgery.  After the surgery, he stated that it was too late and that she should have had the surgery years ago.  While it was too late to save my sister completely, he did give her another year and a half of life.

       Unfortunately, the Dean Health plan denied my referral.  My primary doctor suggested I get a second opinion and pay for it myself.  This was not possible with my financial circumstances.   I had been working as a job supervisor for supported employment for disadvantaged individuals; however, my employer was in the midst of closing down because they had lost their funding, which meant that after 16 years of service I would be living on social security and using Medicare as my insurer.  Although I felt fortunate to have Medicare, it was not enough on its own, so I had to buy a supplement to cover the services that Medicare did not cover.  Social security was hardly enough to cover the costs of living, so the cost of huge medical bills would be out of the question.
       As I left my primary doctor that day I asked for a copy of Dr. Cowgill’s last report.  On the way home I happened to see that Dr. Cowgill’s report indicated that he conducted an exam on 5/31/06 (just a week before).  An exam was never done.  I had sat at his desk facing him the whole time and neither he or a nurse had laid a hand on me.   I was so upset when I saw this report. No wonder that patients slip through the cracks of the medical system!  If another doctor saw this report he would assume that an exam was done and would perhaps overlook something that he believed had already been checked.  I stopped to let advocate Jacquelyn Wineke know about this.  When I got home, I called my primary doctor to let him know what happened.  He suggested I see the Patient Advocate - where I had just been.

Part 12: The Hell with Protocol

       When I arrived at St. Mary's for the test, the nurse curtly told me that they would not be performing the treadmill, and that they would only perform the standard Doppler test, as they had done a number of times in the past.  Taken aback, I said, “But the doctor ordered it!”  The nurse rudely told me that it was not the protocol at St. Mary’s to do the treadmill test.  I was so upset, that for probably the first time in all these years, I talked back.  I told her, “The hell with protocol and if you’re not doing the treadmill I’m getting off this table without any Doppler, putting my clothes on, and walking out of this hospital.”  Agitated, the nurse snapped, “I’m calling Dr. Cowgill right now!” before stomping out.  When she came back, she was very quiet and stern.  She told me that she would be doing the test. As before, it was evident to me that they were not used to doing this treadmill test.  Once again, after my time on the treadmill, she took too long to get me on the table and get the BP cuffs on.  Worse still, she put the leg cuff on my arm, and by the time she got them switched, the pain in my leg had lessened as the blood began to flow back into my legs.  This likely skewed the reading, as had been the case with the delay in my last treadmill test.  Fortunately, the results were still useful in indicating my real problem, even if they were not as extreme as they might have been.
       Dr. Cowgill signed off on the report, so he was the doctor that read the results.  I'm not sure how he felt after the simple treadmill test showed what the wonderful machine he had been so excited about had failed to detect. I never learned what Dr. Cowgill's actual reactions were.  Dr. Cowgill had his nurse call me to set up another angiogram, but she could not tell me anything about the results, perhaps because Dr. Cowgill had not talked to her about the tests. That he wanted an angiogram was a clear indicator that the tests had shown SOMETHING was wrong, even though he wouldn’t talk to me.  The angiogram after the fem fem bypass was supposed to fix the problem, and I felt like I was starting over.   
       Having grown tired of being kept in the dark, and wanting to know more about what was shaping the decisions about my body, I had begun going to the patient records department at the hospital to get copies of my medical reports. I had seen the test results and knew what they showed. Despite the nurse's mix-ups during the procedure, the tests had given an important and dramatic reading. The results were very bad: 0.41R/0.40L.  A reading of .50 is considered serious.  Somehow I was now having blood flow problems in both legs.  I was left to speculate about Cowgill's reaction to the tests, as he never discussed the test with me beyond his nurse saying that the test “warranted” an angiogram.

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? 

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.