@colleenyoung that's a good article. I saw 5 spine surgeons prior to coming to Mayo who would not help me. It was too easy for them to dismiss me and bring up a differential diagnosis of a possible disease instead of the symptoms caused by an old spine injury. Why? Because I had unusual symptoms and I also had overlapping symptoms from thoracic outlet syndrome causing nerve compression in my chest. They only expected me to have arm pain from the level of my disc problem, and I had pain everywhere. I had mapped that out on a dermatome map of the body and how it changed over time. This is a map of the specific areas that all the spine nerve roots supply from where it exits the spine. That worked against me when a surgeon suggested I might have an inflammatory problem like MS because of pain points in every single dermatome segment. I knew that I could change where the pain was in my body by changing the position of my neck, but he just dismissed my comment. He didn't want to take a chance on me and possibly lower his ratings of success because he didn't know how to connect my symptoms with my imaging. Insurance companies use these statistics to rate providers, and patients review doctors online. He is the respected co director of spine surgery at a university medical center and medical school.

I found medical literature with cases similar to mine, and none of my other doctors at that institution would point out this mistake to the director of spine surgery who was the surgeon who saw me. I didn't think he would listen to me if I sent him the literature. I actually found the literature because I read papers from a Mayo surgeon, and I looked up a term I didn't understand. That found the case study, so I wrote a personal letter to this Mayo neurosurgeon and sent that case study with my letter saying that I have similar symptoms along with my imaging, and I had requested that he review my imaging. A month later, I was given an appointment with this surgeon, and he offered to help me.

I thought I would have to plead for help, and I brought one of my paintings with me when I met the surgeon so he would understand what I did for a living and why I needed his help. That was the beginning of a great relationship, and he like my painting. I would bring my new paintings with me to followup appointments during my recovery, and he always wanted to see them. I had worked previously in research for a neuroanatomy professor, and I did the processing of tissues for the microscope, and I had also done some scientific drawings that were published in neuroscience journals. I brought a copy of this study to an appointment, and watched my surgeon's face light up when I showed it to him. He wanted to read the research study about the development of the visual system and how nerves are mapped from the eyes to the vision centers in the brain. It's also because of my prior experience that I looked to research and doctors associated with research as a better place for me to find the help I needed. As people, we are intrigued by new information, and it gets attention, and if you show a brain surgeon a study about the development of the brain, you're feeding his interest.

I kind of think of this a job interview for both parties. As a patient, I need to stand out as someone that needs help and can be helped successfully, and as someone who will cooperate and follow directions. I am also interviewing a doctor to see if I can trust them, and if their area of interest closely matches my needs, and my impression of the capabilities of the doctor. I know I'm not really qualified to make that call, but the doctor needs to explain enough about my case so I trust his qualifications and answer my questions.

If a surgeon thinks a patient will not appreciate their help, they are less likely to help the patient. I watched a video online and heard the same surgeon "director" who missed my diagnosis recommend to other neurosurgeons at a conference, that the time to say no to surgery is if the patient has mental issues. He said you can do the best surgery in the world and they won't appreciate it. I was a little shocked and I wondered if that had been part of why he didn't help me. I wondered if he didn't believe my symptoms were real. His nurse had repeatedly discredited what I reported to her, and she had refused to make some followup appointments for me. My neurologist at that institution had even stepped in and scheduled both an MRI and a followup with another surgeon who was a partner. His notes stated that he didn't know why I had the symptoms, and a month later, he took a job at a different hospital. At the last visit to the "director," he commented that he hoped the "partner" didn't just read and copy his notes about my case, and I could tell he was distracted and a bit irritated, and that comment should not have been made to a patient. I didn't let on that I knew and my neurologist had explained as she was just trying to help me get help. She told me where I could find the partner if I wanted to see him again.

I think one of the mistakes I made was to talk about things with correct medical terminology. The internet is a great place to find information, and then the patient can argue with the doctor about the diagnosis. I really was telling the truth, but because the doctor didn't understand my symptoms, it may have discredited me. I think it would also be pretty embarrassing for a patient to get the diagnosis right and the head of spine surgery misses it completely. The doctor has spent years in training and it's their job to diagnose, and the director had made a comment like that the first time I met him. When I met my surgeon at Mayo and the neurologist, I tried to describe things without using medical terms because I didn't know how that would be received. It may not have mattered, and my Mayo surgeon told me he wanted to explain my imaging to me even though I'd probably heard that before, so he did acknowledge that I had knowledge about my condition. He also told me I was the first patient that came to him because of his paper that I found. I guess that's novel too.