@jkgraham393 Absolutely. You have to advocate for yourself as patient and for family members. That is why I am here helping others with my experience, because my journey was difficult. Because I learned how to advocate for myself and confronted my fears, I gave myself the future of a better life with my choices. In my struggles, I realized that I had enough life experience to do this. If I had kept on waiting and hoping for help, I would be a lot worse off. I was on my way to becoming disabled by spinal cord compression and I was loosing my ability to control my arms to do my artwork. I worked so hard to achieve that skill level in my life, and I didn't want to loose it to an old injury that was being ignored by the local specialists.

I decided to take control of my future and not leave that decision to fear, not only my fears, but the fears of the surgeons who wouldn't help because they didn't want to risk a possible poor outcome on what they didn't understand. I found a study with a case similar to mine right after I was dismissed, and I contacted other doctors at that facility who I'd seen for several years, and none would help me approach the surgeon who turned me down. I knew what he missed, and I'd given him information that could help him make the same conclusion, but he dismissed it, and it wasn't mentioned in the records of my visits. I told him that I could turn my head and turn pain on or off somewhere in my body (like my ankle) just by the position of my head and neck and it was reproducible. Of course that sounds crazy, but I had bone spurs compressing the front of my spinal cord and in doing this it twisted the spine changing the position of the bone spurs that were contacting the spinal cord. The nerve to the legs exit the spine in the low back, and they expected me to only have arm pain from the level of my injury. I think my doctors should have known this or should have looked for literature. They have a lot more access to medical journals than I do. This is the reason that I found my Mayo surgeon because in reading his papers, I found the term that described my pain symptoms which is called "funicular or referred pain" and when I looked that up, I found the case study that was like mine. I also knew that this surgeon would understand this phenomenon because it was mentioned in a paper he co authored.

The lesson is that doctors miss things, sometimes very important things and not everything about the human body is understood. Doctors don't have much time with a patient and edit out what they think isn't important. I tracked how my symptoms changed over time, and also had MRIs that demonstrated the bone spurs were advancing as the symptoms expanded and got worse. It was perfectly obvious to me what was happening. Spine surgeons do have to be careful in that other problems have overlapping symptoms. Surgeons also have success ratings for their procedures, and if they take easier cases, those ratings will be higher.... and then there is Mayo known for taking difficult cases. I would encourage patients to get their medical records. There may be things there that they didn't mention or things that were omitted. As a patient, you need to know that you and your physician are on the same page. You can't just trust that they will do what is best, and they might be swamped with other demands. I never expected that my doctors would not help me communicate when another doctor missed something, and all they would say is get another opinion, and I did... at Mayo. Here is the case study for anyone who is interested and my patient story.
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
Excerpts from "Cervical cord compression presenting with sciatica-like leg pain" from the European Spine Journal
http://europepmc.org/articles/PMC3111492/reload=0
"Funicular leg pain is a rare presentation of cervical cord compression."

"Leg pain or sciatica is a rare ‘false localizing’ presentation of cervical cord compression and there has been only a few cases described in literature [1–5]. The term sciatica has often been associated with disorders of the lumbar spine and pelvis, and we often tend to overlook other parts of the spine in the search for its cause. We report two cases of cervical cord compression, which presented with sciatica-like leg pain. Each case is unique and different from one another in their presentation and concurrent spinal lesions. We hope that the discussion of these cases and the accompanying literature review will make us more aware of this uncommon presentation of leg pain in cervical cord compression."

Being focused on Your Wellnes is at the Heart and Soul of any recovery! Persistenes is the added incrediant that makes it happen! They are the Ying and Yang of being well! Without one you can't have the other.
Sundance (RB)