Navigating conflicting medical opinions to be your own advocate.

@jolinda My road to Mayo was a long one, but here it is, and I believe it is important to help patients learn to advocate for themselves and not just accept a medical opinion that doesn't make sense. If we blindly trust without asking questions, that may be good or bad depending on the nature of the problem. I learned to question and push forward even though I was terrified of major surgery. I also had to advocate for my emotions, and learn to calm my fears. I knew it would be a choice between recovering my ability, or a disability if I did nothing, and I was not going to allow fear to make that choice for me.

I became my own advocate and came to Mayo after 5 spine surgeons turned me down. I had pain all over my body from cervical spinal stenosis because of a ruptured disc and bone spurs that were pressing on my spinal cord. Every surgeon could see the problem on my MRI imaging, but they couldn't connect it to my symptoms. From the beginning, my first symptom was when I turned my head, I felt a pain in my ankle. If I looked forward again, that went away. The first specialist said it wasn't that bad yet and I asked if he used neuro-monitoring during his surgeries... nope he did not....not what I wanted to hear.

Over time gradually I had pains all over my body. I had fallen asleep sitting up which caused my neck to spasm and I had so much pain that I had to sit absolutely straight because any movement or bending caused extreme pain everywhere and headaches, and I knew that I needed surgery. I went to specialist #2 who listened to me talk about this pain everywhere in my body, and he told me that the central nervous system doesn't feel pain and he didn't know what was causing it. He dismissed the leg pain. I got him to order a new MRI and later took it to another specialist. I was in this pain for 2 weeks, until a physical therapy session loosened some neck tightness. I went home and laid on a wooden roller that has a groove for the spine and knobs that massage the muscles, and rolled up and down, and every thoracic vertebrae clicked and reset itself. I put it under my neck while laying on the floor, and turned my head using it at every level with a slight tap, and every vertebra clicked back into place. It didn't touch at all except for the tap to the side on the spineous process that sticks out where muscles attach. Then when I did a bridge exercise, my C7 also rest itself and lessened the pain. Every vertebrae had reset itself. I could move again without causing extreme body wide pain, so I knew that the muscle spasms had shifted all of my vertebrae in cervical and thoracic and caused the pain with the misalignment. My therapist was working on the chest tightness with my thoracic outlet syndrome and she was the first to recognize that the ankle pain might be related to my neck.

Specialist #3 told me that I had significant spinal cord compression and offered surgery, and I had some dizziness at a subsequent appointment and pain in my legs. The doctor never saw me then, but had his PA tell me to go to a rehab doctor and fix the pains in my legs first, then I could come back for cervical spine surgery. The surgeon didn't want to answer my questions and hardly examined me at the first appointment. Now, I'm grateful he backed away. He started some significant fear for me that escalated because he wouldn't answer questions.

Specialist #4 told me that the arm and shoulder blade pain I drew on his diagram was spine related, but the leg pain I drew there was not. He did a cervical epidural injection as a diagnostic test and probably couldn't explain the results I got from it when it temporarily took away all the pain I had everywhere in my body including my leg pain. This should have been enough for him to question the source of the pain and look for similar cases. He never gave me his opinion about the results. It also caused some new awful pain in my hand because of the pressure of the fluid that was injected that had no place to go. These injections have some real risks, and I decided not to do then anymore. After a few months, the new pain got better, but I had resulting cold sensitivity in my hand for over a year.

After the injection, I started mapping my pain as it slowly returned on drawings and dating them and I saw another doctor at the same medical center about thoracic outlet syndrome because of the overlap in symptoms with spine issues. I had reported bladder retention to the spine surgeon's nurse, and she told me to see a doctor about that. She was not recognizing this as an early sign of spinal cord compression. The surgeon's nurse was refusing to make follow up appointments for me and just telling me to have another spine injection. I had a new MRI ordered by my neurologist when pains were getting worse. The neurologist was helpful and reviewed my new MRI with me and thought decompression surgery was needed because the bone spurs had grown, and because I couldn't get an appointment for the surgeon from the nurse, the neurologist arranged for me to see a surgeon who was a partner in just a few days about the MRI. This partner Specialist #5 wanted nerve conduction studies and I did them with my neurologist, and followed up, but his recommendation was to have another spine injection. His staff was mentioning peripheral nerve problems as a cause, not a spine problem. Right after that, the partner surgeon #5, resigned to take a position at another hospital, and then it made sense why he had brushed me off. I found that out from the neurologist. Then I got lucky... so I thought...I was able to make a follow up appointment again with Surgeon #4 when another nurse answered the phone.

I had been diagramming my pain on drawings for 5 months since the injection that had long since worn off, and I could show how much it had changed and gotten worse. I wasn't able to stop the pain by turning my head anymore, but could change where the pain was when I did that. I had some intermittent problems walking with an uneven gait, and the bladder retention as well as muscles jumping in my arms and legs. I had lost muscle in my upper arms and shoulders and mentioned that to the surgeon, but he didn't agree. He didn't know how much muscle I started with and it looked fine to him. He read the visit notes from the partner who had resigned and he seamed irritated and commented that he hoped the this doctor hadn't just copied his notes instead of writing his own. I didn't let on that I knew what had happened, but I wondered if that affected his decisions about me and if he was distracted by the disappointment of loosing a physician who was supposed to take over as a head surgeon at a suburban location in about a year for a new spine center that was under construction. They were building a new hospital with state of the art equipment, and the partner didn't have access to the best in equipment at the time, and moved on to another facility where there were up to date facilities for his surgical expertise . So after 5 months, I felt some relief when Surgeon #4 mentioned possible surgery, but he said he didn't know if it would make me better or worse. He commented that my diagrams showed pain in every dermatome of the body and that suggested an inflammatory problem like MS that he could test for with a spinal tap. I told him about turning my head and in changing my neck position, it changed where I felt pain, but he didn't comment about that. It was a couple months later that I sent him a message about muscle spasms causing dizziness and vertigo, and that my physical therapist had been able to help resolve that. I thought it would help him understand the urgency of my situation, but I was dismissed instead. His response was sent through the nurse who wouldn't help me, and was that he would not offer surgery at this time and keep up with physical therapy and let him know if it gets worse. I'd been in physical therapy 3 years already for the thoracic outlet syndrome and was it was continuing to get worse because the spine problem.

I had been reading medical spine literature all along and watching online videos of Surgeon# 4 giving instructional presentations to other surgeons so I knew a lot about the current interventions. I started looking at the list of neurosurgeons at Mayo, and found one with a similar area of interest to the problem I had. I read his papers. I had been doing that to help find good surgeons by looking at their research. One of the papers talked about leg pain caused by cervical stenosis. This had been overlooked by every surgeon who saw me and the paper mentioned a fusion without hardware and just a bone graft which sounded like a better choice. In the paper, was a term, "funicular pain" or "referred pain" and I looked it up. What I found in doing that was a surgical case study very similar to mine where the main complaint was leg pain caused by spinal cord compression in the neck. Nothing could be proven, but they also had an epidural injection that had taken all their pain away the same as it was for me. The only proof was that decompression surgery cured the all over body pain. I discussed this literature with my neurologist and I asked her about Mayo. She had done some training there, and thought it would be good to get an opinion there. She wasn't willing to confront Surgeon #4 on my behalf with the literature, and neither was the other doctor who saw me for TOS. Their advice was to either wait and have another MRI later down the road and wait to follow up with Surgeon #4 or get another opinion.

There was no reason to wait longer. It had been two years since the first MRI and specialist opinion. I contacted this Mayo surgeon, Dr. Jeremy Fogelson, with this new found literature and told him I thought my case was similar, and that I had been turned down by other surgeons, and I asked for an appointment. I only wish I had come to Mayo first. I went through trying local surgeons, and later big city local surgeons and got nowhere, so it would be the Clinic in the cornfields that would change my life. Dr. Fogelson helped me and I am most grateful. His spine surgery took away all the pain that had confused the other surgeons. Here is my patient story.
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
The big clues that previously were missed or avoided in my case were:

1) I could change the location or duration of pain by turning or moving my neck because that changed where the bone spurs contacted the spinal cord, and all the communication for everything in the body passes through the cervical spinal cord.

2) During the times I had muscle spasms, my pain got worse, and symptoms like walking correctly and bladder function were affected because if you offset the vertebrae and move them out of the correct alignment, essentially, the spinal canal gets smaller and symptoms get worse. It's like a string of beads, and pulling on a bead yanks on the string which represents the spinal cord. There was no fluid space left around my spinal cord, and it was compressed even more with misalignment.

3) No one had advice about the results of the epidural injection and didn't discuss it.

4) I demonstrated a progression of symptoms from the onset that were all related to the position or change in position of my spine.

5) I had visible muscle loss with weakness and one arm that this smaller than the other. My physical therapist recognized it.

6) Dizziness and vertigo can be a symptom of a cervical spine problem and that was true for me. It is cited in medical literature. It can also have some other serious causes.

7) If a patient can find relevant medical literature with limited access online that explains their issues, why wouldn't a surgeon find similar literature, and consider the possibility of the diagnosis?

8) I also had the help of a good physical therapist with interactive sessions and I experienced and understood how realigning everything correctly helped me at least until the next muscle spasm. She bought me a lot of time while I was waiting to be rescued.

9) I'm not sure what to say about the nurse who interfered so much, and I wondered who was really making the decisions about how much access I was allowed to have for appointments with the surgeon. There also was no collaboration between doctors, and test results were sent to the wrong office location and not available when I came for appointments. This shouldn't happen.

Patients don't need a doctor's referral to come to Mayo. I chose my surgeon and referred myself by writing him a letter and arranging to send my imaging. Prior to Mayo, I had to deal with workplace politics at my medical appointments, and doctors who didn't listen to me. I got all of my records and their visit notes so I could look up and see what they thought about me, and found things written that were unsaid, and indicated they did not know the source of my pain. If you look at it that way, I guess they are right not to do surgery if they don't understand the problem. I would prefer an honest answer if they don't know, rather than a band-aid approach that doesn't solve a problem. Surgeons don't want to fail and risk their reputations on something they don't understand. They are judged by insurance companies and hospital ratings, and it's a lot easier to take cases that are obvious with fewer perceived risks, and therefore higher successful outcomes in your career statistics. That doesn't help a patient like me with a complex or unusual case. I didn't know it was going to be this difficult to get help. I knew if I didn't advocate for myself, I would become disabled. We owe it to ourselves as patients to question what doesn't seem right, and I had solid evidence of a cause and effect relationship of my symptoms and my spine problem. I was able to chose my future because I kept searching until I found an answer. It was a long difficult road, and had I known what roadblocks were to be in my way, I would have come to Mayo first, and not wasted two years while my muscles were wasting away.

@jolinda U r a Trailblazer... @jenniferhunter Have seen U bopping around here but never read your story. Amazing, particularly because I know how draining and frustrating it is. Seeking answers against what is supposed to be the Best advice... Any who wanted to ask which cervical level you had fused? Thanks