Friday, May 24, 2013

She is NOT a Nice Woman

Once I got the okay to start therapy after the scapular muscle reattachment in August, things were going relatively well at first. At therapy my therapist treated both shoulders. It was really difficult to rehabilitate my left side because things were super tight from the surgeries but we did make progress. The rehab on my right shoulder went well until I hit about 45 degrees of flexion and external rotation always hurt. When I did these motions the same sharp, piercing pain that I had before surgery down the back of my arm returned. It made progressing in therapy very difficult. My right shoulder would sit forward (not subluxated or dislocated) because every time we tried to get it to sit in its normal position, I had sharp pain down the back of my arm. At the end of August, the one day after physical therapy, I went home and started researching on the computer because nobody seemed to know what this sharp pain was. As I was researching, I came across Quadrilateral Space Syndrome (QSS) which is a rare condition where the axillary nerve gets compressed causing pain down the back of the arm. The more I read about QSS, the faster my heart began to beat. My symptoms matched exactly. I was 100% positive I had QSS so I emailed my physical therapist and sent him the information I had found.

When I saw my therapist at my next appointment, he too seemed to think I had QSS, however; when I met with Dr. K he did not. It was hard for me to hear Dr. K didn't think I had QSS because deep down I knew I did. Dr. K ordered an MRI which showed my capsule was loosening and an EMG (nerve) test which came back normal. I did more research and a lot of times QSS is diagnosed through a nerve block. I scheduled a consultation appointment with a neurologist and we decided to do a nerve block. At the next appointment, the neurologist tried to do a nerve block but because the anatomy in my shoulder is altered, he had a difficult time getting it in the correct spot; however, the little medication that did go in the correct spot helped immediately. When I got home I did more research and came across 2 doctors in Illinois that deal with QSS but of course they had retired. I called a hospital in Minnesota to see if they dealt with QSS and they did not. I called the doctor's office in Illinois where the 2 doctors retired to see if they knew of anyone that knew about this nerve condition. The office called me back a few days later and told me to go see a neurologist in St. Louis because she knows about QSS. The next day I called and scheduled an appointment for in October. I had to send ALL of my shoulder records, nerve records, MRI etc.

On October 13, 2010 my mom drove me down to St. Louis to meet with the neurologist who supposedly knows about QSS. From where we live, it is about a 6 hour drive to St. Louis. October 14, 2010 was the day I saw the neurologist. Once we arrived at the doctor's office, my mom and I were escorted into the exam room. The doctor's fellow assistant came into the room and asked me questions. He was very nice and seemed very interested in my case. After he had his questions answered, the fellow left the room and got the doctor. To my surprise, when the doctor walked in, she had three additional people with her plus the fellow that had just taken my history. This exam room was not a big room at all. There were a total of seven people in this room with the door closed. Talk about feeling closed in.

The doctor said her name in a very confident manner. She looked at me and asked, "Why are you here today?" I looked at her and replied, "To find out if I have quadrilateral space syndrome." The doctor then raised her finger up to her lips and said, "Let's just get this straight first, you do not have quadrilateral space syndrome." My mom and I looked at this doctor with such confusion. How could she possibly know if I had quadrilateral space syndrome? She never asked me what my symptoms were. She never layed a finger on me to exam me. She obviously had a preconceived notion and did not even bother to do her own assesment. That's just wrong. With a confused look on my face, I looked at the doctor and said, "Then why did I just drive 6 hours to come see you?" I don't know what answer I was expecting but what she told me was not the answer I thought I would get. This doctor looked at me and in a very snippy tone said, "Oh, don't worry, you're not wasting MY time." Really? Did she really think I felt bad because I'm wasting HER time? It was more like she was wasting my time. If she already had her mind made up about me then why wasn't I told this on the phone? I had just spent the past month gathering all my records, communicating back and forth with her nurse discussing this appointment, and my parents had just spent a lot of money for hotel reservations and taking time off work.

What proceeded after this initial encounter was a complete joke and flat out insulting. In the span of 30 minutes, this "doctor" told me: none of my surgeries were necessary, she said I kept saying there was a problem with my shoulders because I was looking for attention, she said I'm trying to outnumber the amount of surgery my mom had. She actually told me to be quiet and looked at my mom and told her to list the surgeries she has had. My mom listed the 8 surgeries and I made sure to chime in and say 2 of which were for her breast cancer. At that point I had, 15 surgeries. If I was trying to "outnumber" my mom don't you think I would stop at 9?? The "doctor" then looked at my mom and I said we both needed psychiatric treatment and my mom needs to stop buying into my "game". On top of it, she concluded the visit by insinuating Dr. K and Dr. B were "monkeys" and she made me go see one of HER orthopedics to evaluate my situation. Unknown to her, Dr. K and Dr. B are world reknowned; they would never do surgery on me if it wasn't necessary. I can't begin to explain how hard it was to keep my cool. I have never been so mad and despised a doctor this much in my life. It has taken me a week and a half to finish this blog. It would have been finished sooner but everytime I would start to write about this doctor, my blood would boil and I would get so mad; therefore, I clicked save and turned the computer off.

Later that afternoon, my mom took me to see this other orthopedic. She could not have been nicer but she was certainly confused. When she came into the room, the first thing she asked was, "Why are you here?" I said, "No clue, the other "doctor" made me come see you. She insinuated I was going to bad doctors for treatment." She had a confused look on her face. My mom and I continued to explain what had just happened at the previous appointment. The orthopedic then asked me who has been doing my shoulder surgeries. I replied, "Dr. K and Dr. B." The doctor then told me that I was certainly going to the best doctors. She knew Dr. K and knew a lot about Dr. B even though she hadn't met him personally. She reassured my mom and I that we were in great hands with 2 superb doctors. At this point, the doctor examined my shoulder. I told her she had to be very careful with my left shoulder because of the 2 recent surgeries. When she moved my left shoulder I felt something pop in the joint.  After she finished her assesment, she told me she didn't think I had quadrilateral space syndrome and she has no idea why the other "doctor" sent me over; the way she saw it, I have one really big surgery coming up to address my right scapula and the instability.

The St. Louis Arch 

 Touching the arch
 Me in front of the arch

Even though the overall trip to St. Louis was not a good one, it did have one positive. The fact that I had to go see another orthopedic and this doctor agreed with Dr. K and Dr. B's course of treatment, gave me more reassurance that I was with VERY good doctors. Over the years, I have been questioned why I continue to stay with these doctors even though there have been continued problems with my shoulders. The answer is simple. I trust them 100%. A relationship was built between Dr. K, Dr. B and myself. I saw these two doctors more than I saw my extended family. Why would I leave them when both of these doctors trust me? I have "stretchy" shoulder tissue. Multidirectional instability is challenging to treat. Scapular muscle detachment injuries are not common and the procedure changed. When you look at the big picture and all of the contributing factors it's not Dr. K and Dr. B's fault. I am just complicated.

Next stop was going to see Dr. K and Dr. B because I firmly believed I had quadrilateral space syndrome...

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