Navigating conflicting medical opinions to be your own advocate.

@jolinda, I appreciate your starting this new discussion that was born out of this related discussion:

- Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=9#comment-324774

Advocating for one's care, such as coordinating between specialists and local care, getting second opinions and ensuring followup care is caring and effective is certainly worthy of its own discussion. I'm inviting @artscaping @auntieoakley @gingerw and others to add their experiences.

What a powerful story! Our story is not as dramatic but it is as life changing for us. My husband was finally diagnosed with multiple myeloma after a year of going to the doctors with a painful upper back. The vertebrae was broken and every bone in his body was full of holes. I had seen this disease brutalize and eventually kill my friend in one year, under the care of the local doctor. So I went to reading all I could find, I asked for a referral to Mayo and our PCP laughed and asked if I had a preference for which one. I wanted to go to Rochester, they do so much research on this disease which 10 years ago was not as widely known. He had 9 siblings and their families living in Minnesota at the time so it seemed perfect. Then I found a two day seminar put on by the International Myeloma Foundation just 3 hours away the very next week. We went! We were given so much information, that we went into his oncology appt locally already armed with a lot of information. When the doctor said he just didn’t believe in all these new treatments and stem call transplants and such, we explained we were going to Mayo for a second opinion before he would receive any treatments. He became loud and angry and said we didn’t need to come back if we went to Mayo. Yeah, we weren’t really planning on it. We went to Mayo, and he had so many tests that all said he was really healthy except for the Myeloma and he was a good candidate for transplant. So we learned about a doctor who had recently left Mayo for warmer weather just 3 hours from home. We went to him and he coordinated with Mayo for James treatments. Two stem cell treatments later James had a complete response and almost 5 treatment free years. We are 9 and half years later in a disease that that 14 years ago carried in our mind, a year survival rate. My husband still sees that same doctor. We are so grateful to him and the Mayo Clinic and the International Myeloma Foundation. He still has a reasonable quality of life. He cannot lift push or pull anything over 5 pounds, he no longer runs, bowls or works out at the gym. He walks for exercise and he naps a lot, but he is happy and we are together still. I am grateful for every single day that we have. If you have a serious diagnosis or are unsure of your doctor, seek out every advantage you can and don’t let anyone tell you no! It is your health, your life, and your quality of life on the line.

@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.

You are such an inspiration! I am so glad you kept fighting. Thank you for sharing your journey.

@jolinda Thank you, and you too... what an inspiration you are to come up with a better idea and change the way that surgeons do their jobs! I watched your video and it was touching to hear your surgeon talk about you, and you changed some thinking outside of Mayo too, advancing medicine. I was also at Mayo in 2016. I am glad you are doing well now and I can see how serious your kidney problem was. That's really why I'm here because it was so difficult for me to find help and I hope my experience will help another patient navigate the uncertainty. Thank you for your kind words. I did write to the last surgeon I saw before I came to Mayo who saw me the longest and let him know about my great recovery after spine surgery and send him the medical literature that helped me. I was kind and wrote to him in the spirit of sharing information, but there was no response, but I had some closure for my efforts as a patient.

Jennifer,

To be clear I think it was preparation meeting opportunity in my case. I eliminated everywhere that said, "no", and Mayo was my last shot at it possibly happening. The surgeon I had was brilliant and it was his techniques, courage and empathy for my case that made it possible. Without a living donor to give me a kidney none of this would have happened. I'm blessed to have had such a gifted surgeon and such a generous donor. My part mostly entailed being sick and stubborn! 🙂

Your story turned our so well. What advice would you give to someone who is coming to Mayo who is hurting and scared, someone who was told they couldn't be helped somewhere else?

1. In Aug 1988, I was diagnosed with Systemic Lupus [SLE]. At that time there were not the medical advances and equipment we have these days. I knew something was wrong. The first specialist was a dermatologist, who was convinced the symptoms were all in my head, and wanted to put me on predisone. I refused as I did not want a medically-induced diabetes [which runs in my family]. I insisted on a second opinion; he met that 2nd dr in the hall and told her "really, it's nothing". I came out of the exam room half-dressed, to dress him down. Subsequent definitive testing showed the lupus. What might have happened if I had not advocated for my own case?
2. In Nov 1997, 6 months after my annual Pap smear, I returned to my ob-gyn, asking for a repeat. I recall his words clearly, "this is not a test women want to volunteer for". But I knew something was wrong, was paying for it out-of-pocket, he disagreed but he did it, and we found cervical cancer in situ. That was resolved with a lazer conization in the same month. What might have happened if I had not advocated for my own case?
3. In 2007 and 2008 I had noticed a spot on my right forearm that was changing. Classic foreboding to have it looked at, right? But drs were more concerned with small basal cell skin cancers on my face. Three drs looked at the spot and said it was nothing to worry about, but I had to force the issue. Finally when there was a biopsy going in for yet another basal cell, I convinced [harassed? insisted?] the 3rd dr to biopsy that spot. His words, "just to appease you". It was amelanotic [non-colored] malignant melanoma. Surgery was Dec 2008, and I sport a 32 stitch scar from the surgery. The case was rare, having no color, and was written up in journals. What might have happened if i had not advocated for my own case?
4. In June 2017 I changed nephrologists [having been diagnosed with chronic kidney disease in 2006, then a rare kidney disease in 2015]. The cavalier attitude and not listening to changes that were reported prompted the switch. The new dr saw problems in labwork and referred me to a hematologist-oncologist. My primary tried to dissuade me from the tests the specialists wanted to run, saying, "this is overkill, unneeded." The result? Low-grade Non-Hodgkins Lymphoma, What might have happened if I had not advocated for my own case?

Bottom line. Some drs don't want to think the patient may be more informed than they are. Some drs are "company men" and don't want to spend what they think are unnecessary resources and funds on tests. As a patient, I have learned to look out for myself. I question, or challenge, when needed. I use information available to be able to converse on the same level as the medical staff. Afterall, this is the only body I get this time around.
Ginger

@gingerw Good for you GInger this is exactly what everyone needs to do listen to there bodies and advocate for themselves . A lot of Drs even today think they are correct and when the patient has some knowledge they dismiss it like you don't know what your talking about . Good for you

@gingerw. You’ve just become my hero and inspiration! I have always at times doubted doctors but i have, admittedly, not advocated as well as I should have. I really learned something when it took forever for my cirrhosis to be diagnosed locally - afterward I realized how many red flags I had! I never should have trusted the local doctors. Plus, at that point I had malignant lesions that were approaching the size and number that would have disqualified me as a transplant candidate. Had I gone any longer undiagnosed I may not be here now.

It’s never too late and I am doing better now but I tend to try too hard to not offend anyone, including my doctor. My doctor claimed to have had other patients with cirrhosis but I wonder. I gave him a list of cirrhosis symptoms afterward, all of which I had. He said he had relied on what previous doctors had diagnosed (shaky hands = essential tremor, etc). That was not a good answer, in my opinion.
JK

@contentandwell Ah, shucks, thanks. I learned the hard way to stand up for myself, in all matters. Being informed, not taking "no" for an answer if our gut is telling us something else, has won me supporters, alienated many. I am glad you are here!
Ginger