@kdks99 If this helps, this is how I made my decision to go forward with spine surgery. I was suffering from spinal cord compression in my neck and was loosing the coordination in my arms. I was so weak that driving a car or pushing a shopping cart was completely exhausting. I lost muscle to atrophy on the back of my upper arm and shoulder. I was walking with a limp I couldn’t control when my vertebrae shifted making the spinal canal smaller. I had trouble emptying my bladder and knew that could progress to incontinence if it got worse. I was taking care of elderly disabled parents both in wheelchairs and I knew that could be my future. There was pain all over my body. I had vertigo because a muscle spasm rotated C1 and C2 and the world started spinning around me. I had also worked for years to develop my talent and ability to work as an artist and loosing that was breaking my heart. I couldn’t hold my arm up to paint and my last painting was done by propping my arm on a Walker that my mom couldn’t use anymore.

I did have the advantage of a science degree in biology so I could understand medical literature and I watched as many videos from spine surgeon conferences as I could find online with free access. I looked up everything in my medical records. Actually, I found my correct diagnosis in literature and the first 5 surgeons who examined me missed it completely. I did all of this while I was having panic attacks because I was afraid of surgery and I dissected that and deprogrammed my fear. It was a decision of facing my fear or becoming disabled and loosing what I loved to do with my art work. The medical literature indicated that a possible clue on my condition called "funicular pain" was having results from an epidural injection that takes away all the pain. I did have a diagnostic injection and it took away all the pain everywhere in my body temporarily, 5 days total of pain free. The surgeon at the time expected a different result, so he ignored this information because he didn't understand why it worked.

With that newly found medical literature in hand, I requested an appointment at Mayo and I had successful surgery. I was so happy with my results that I wrote a complimentary letter to the CEO of Mayo about the surgeon who gave me back my artistic gift. He didn’t do it alone. He had his team and I joined that team to insure my success. I expressed my ultimate gratitude to my surgeon with the first post surgical painting of his portrait which was my gift to him.

Here are a few takeaways for you. I had no assurance and several wrong guesses from surgeons about what was wrong and causing my symptoms.

I knew how to turn pain symptoms on and off with neck positioning and had tracked the progression of my symptoms, so I knew without a doubt that I needed surgery to decompress my spinal cord and the symptoms were related to my spine condition. It had progressed far enough to cause an electric shock down my entire body if I bent my neck forward.

I did not have stenosis in the foremen around the nerve roots, but I could side bend my neck and hit those nerves because the space was smaller with the disc collapsed by 50%.

With all of the fear I had to conquer, I wasn’t a patient who would gamble, but I reached a point where I knew more about why my condition caused my issues than the 5 surgeons who got it wrong.

My surgeon at Mayo was not only excellent at his job, but he really listened and understood what I needed and he offered to help. My physical therapist did myofascial release work that loosened up the muscles which made it easier for the surgeon to retract during the procedure. MFR also helped loosen up surgical scar tissue after my recovery.

I was on my own with my decision for most of my journey and I took it one step at a time and figured it out. I have no regrets and I got my life back because of spine surgery.

My story
https://newsnetwork.mayoclinic.org/discussion/using-the-art-of-medicine-to-overcome-fear-of-surgery/