Can't Get Help. What Next?

@jenniferhunter What a wonderful post that pretty much covers the waterfront. I am going to update my medical record so that the picture of my health life includes issues that relate to the whole body. I just noticed that my Endocrinologist has listed non traumatic fractures as part of my bone history. There must have been some misunderstanding because all of my bone injuries have been trauma related.....like falling off of horses and down mountains. I even had all of my spine imaged for evidence of fractures. There are none. So...see....I need to change that summary. Hope you are doing well with your recovery. When will we see you again? After Covid I am sure.
Chris

faithgirl, I am so sorry to hear of your experience at Mayo. I made the trip to Rochester with my husband. It is a 7-hour drive for us so we spent one week in Rochester, then one week home, than back again for another week. It was all a waste of time. I remember the rheumatologist telling me all about how he diagnosed another patient immediately. As he droned on and on, I wondered when he would get around to me. He said he was impressed by the documentation I brought with me, but my case was very complicated and he did not know what was wrong with me. Of course, I saw other doctors there, but no one could help me. I sent two of the doctors a letter begging for help after the second trip and I had received the "nothing" letter. I think once you are there and gone, no one will reply. Maybe you will have better luck than I did. I do wish you the best and hope you can find someone to help. @joybringer1

I want to thank each of you for sharing your stories and resources. I continue to deeply struggle with the grief and deep sadness of not receiving help. I know doctors are human and they can only diagnose what they know. In fact, I work with a team of doctors locally in my home region in the area of physician burnout, providing them deep listening and an opportunity to share their own stories with me and each other — so I see their clay feet on a regular basis. But I have already lost a year of my life, waiting and waiting to get better. I guess, I misjudged the Mayo Clinic process and falsely believed that if one doctor didn’t know the answers I needed that they would reach out to their colleagues for diagnostic help and advice about where to turn next. It’s heart breaking, as many of you know only to well, to feel abandoned in the care process.

Thanks again for listening and sharing your own experience.

@faithgirl30 I am so sorry for your experience. I think most of this have suffered what you are going through while maybe not at Mayo, at doctors and clinics within our own communities. It’s a long, exhausting struggle. Rest a couple days then start the fight again. We are here for you if you need to talk. For some of us it has taken years, literally. All the best.

@faithgirl30, I don't think you were misled in your expectation of a collaborative team at Mayo Clinic. There definitely seems to be a broken link somewhere. I hope you seek mediation with the Office of Patient Experience and get the care that Mayo is renown for.

@faithgirl30 I understand your frustration. I have spent 3 weeks at Mayo in the last 12 months and am still trying to navigate through pain. I received some answers but am still frustrated with symptoms no one seems able to address. I am trying to tell myself to suck it up butter cup, this ain't goin' away! Definitely not an easy road.

@suzanne2 I am so deeply sorry about your experience with untreated and undiagnosed chronic pain. Having undergone 5 neck surgeries in the last 4 years I know what it feels like to hurt and to wonder if things will ever get better. I hope and pray you are able to find a medical team who will care for you with understanding and compassion, and you are able to eventually find the answers you need that will facilitate healing.

@faithgirl30 Sometimes you need doctors outside of mainstream medicine. I found that out some years ago when I discovered my environmental medicine doctor, and I don't know if Mayo has this specialty. Over the years, there have been lots of things doctors have missed that I have figured out for myself. I've been badly treated by a spine surgeon's nurse who didn't understand my real symptoms of spinal cord compression and she was protecting the surgeon's time and refusing to make a followup appointment for me. Years earlier, when I had carpal tunnel surgery, the surgeon completely missed that I had thoracic outlet syndrome and when I went back to see him with my hand turning purple, he took my pulse, told me I was fine and accused me of malingering. I was able to figure out this diagnosis before my doctors did, and I had to find another opinion elsewhere before I got physical therapy for that. Unfortunately that became a work comp case and I was badly treated by a lot of people and doctors who were hired to try to discredit me. Through all the hardship, I developed a sense for figuring things out and researched everything on my medical records. I know this is hard to be pushed away by doctors. It's easy to take things personally. Sometimes it takes years to figure things out. It has for me in certain instances, but I never gave up. When I wasn't getting anywhere, I was always paying attention and reading research. I found the diagnosis that was missed by a well known spine surgeon (with the nurse who refused making appointments) that explained my unusual pains from my spine problem. I felt awful about that after spending 6 months doing every test the surgeon wanted only to have him decide not to offer surgery to me. I had been a patient there for 10 years for thoracic outlet syndrome, and the doctors that knew me would not help me address my findings with the surgeon who missed the diagnosis. No one would point out a mistake. I was crushed, but I got online and looked for another doctor. While Mayo is a wonderful place with very good doctors, it's not the only place. If you haven't tried an integrative doctor before, that might be a good choice and you can find that closer to home. You are not alone. Take some time and work through it, and then find someone for another opinion. As Colleen suggested, you should contact the office of Patient Experience in case they can work out a solution. I don't know if that's possible, but why not try and your complaint will be heard. The Cleveland Clinic is supposed to be similar to Mayo and was also suggested to me when the spine surgeon dismissed me. Mayo was closer and we were driving, so I came to Mayo. My dentist actually said something to me that helped. He told me that I wouldn't want someone operating on my spine who didn't understand the problem. That made me feel better. We don't want doctors guessing what is wrong and treating based on that. I had to find a lot of strength inside me and I felt bullied. I also had to face a lot of fear I had and learn to advocate for myself. You can do this too. If you can think about it in those terms where you make a choice not to see a doctor who doesn't understand the problem, it might make you feel better and more in control of the situation. If I have given you any ideas that you think may help, acting on that will make you feel better regardless of your Mayo experience. It's about advocating for yourself and choosing another doctor for the job. Think about the clues you have in your symptoms even if no one listened to them before. That can lead you to the answers. If you share more of that here, we can try to help and see if there is something familiar. Don't give up on yourself; get past those feelings and try again.

@jenniferhunter thank you for sharing so much with us! Shared stories are what keep me fighting.

@suzanne2 please keep us posted on your journey to find help. Many days I only get out of bed to use the restroom but reading some postings on this forum gives me inspiration to keep trying new things after I have my pity party and lick my wounds.