When Mayo Won’t Help. What Next?

Posted by faithgirl30 @faithgirl30, Nov 21, 2020

I just returned from a whirlwind trip to Scottsdale Mayo campus. I’ve been dealing with totally crippling and devastating fatigue for more than 1 year — which started after my 5th spinal surgery in the past 4 years. My medical/surgical team initially thought the fatigue was just due to a strenuous surgery and recovery. But then I lost 50 pounds without trying and cortisol tests revealed low cortisol levels. After a cortisol stim test with some confusing numbers, one of my doctors who trained at Mayo wanted me to be evaluated by a Mayo team to get to the bottom of what’s wrong. He assured me that the Mayo doctors are the best at what they do and their team approach to providing care is second to none. Thankfully the referral went in on Tuesday of this week and by Friday I was being seen in Scottsdale by an endocrinologist.

I spent a thousand dollars on spur of the moment airline tickets, a rental car and lodging. I was deeply hopeful that I would have the experience that’s printed on Mayo’s own website:

“Successful treatment starts with an accurate diagnosis, and our experts take the time to get it right. A team of specialists will listen to your needs and evaluate your condition from every angle to make the very best plan for you”.

Unfortunately, that was nothing like my experience.

Instead, I met with an endocrinologist for 20 minutes who looked at my file and said, “yes your cortisol numbers are a little low, but not earth shattering. I don’t think your symptoms are actually endocrine related. I don’t know what’s causing them, but I’m sure it’s not related to anything I treat. I will run a few lab tests to rule some things out but I doubt it will uncover anything. I’m sure that whatever’s wrong with you isn’t related to my department.”

So, I asked if I would see her again and she said no the results would be posted on the patient portal. I then asked what happens after that and she replied, “you go home”.

So I had labs drawn for thyroid and diabetes, and celiacs disease, and she redid the cortisol stim test. They came back negative, and I am now on a plane home (in just under 24 hours at Mayo) with no diagnoses, no further steps, no referral, and no suggestions about where to turn. What happened to Mayo’s commitment to find an accurate diagnosis and for the evaluation by a team of experts?

And what am I supposed to do now? I’ve still lost 50 pounds without trying and I’m still so tired I can’t function. When Mayo won’t help? Where do you turn? I’m so thoroughly disappointed in the Mayo Clinic I could scream – but I’m too exhausted to do so.

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

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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.

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@faithgirl30

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.

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@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.

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@faithgirl30

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.

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@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.

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@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.

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@suzanne2

@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.

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@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.

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@faithgirl30

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.

Jump to this post

@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.

REPLY
@jenniferhunter

@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.

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

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@suzanne2

@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.

Jump to this post

@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.

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@bustrbrwn22

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

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@bustrbrwn22 You are welcome and thank you for your kind words. I always try to use myself as an example if it can help someone else learn how to advocate for themselves. I didn't start out knowing how to do this and I grew up fearing medical procedures. I learned all of this the hard way and the funny thing is that my parents really wanted me to be a doctor and I got a biology degree with that in mind, but when it came to that decision in my young life, I knew that I could not handle the stress and trauma that doctors must deal with. I lived with those fears right up until I needed to face them when I went through spine surgery. I couldn't let my fear decide my future and I had to face it and deprogram it in order to have the surgery I needed to keep from becoming disabled. That is both an easy choice and a hard choice at the same time, and I was changed by that experience. So I will put the question out there… how does fear, anger or regret hold you back from making decisions that could better your life? How can you change that now?

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@jenniferhunter

@bustrbrwn22 You are welcome and thank you for your kind words. I always try to use myself as an example if it can help someone else learn how to advocate for themselves. I didn't start out knowing how to do this and I grew up fearing medical procedures. I learned all of this the hard way and the funny thing is that my parents really wanted me to be a doctor and I got a biology degree with that in mind, but when it came to that decision in my young life, I knew that I could not handle the stress and trauma that doctors must deal with. I lived with those fears right up until I needed to face them when I went through spine surgery. I couldn't let my fear decide my future and I had to face it and deprogram it in order to have the surgery I needed to keep from becoming disabled. That is both an easy choice and a hard choice at the same time, and I was changed by that experience. So I will put the question out there… how does fear, anger or regret hold you back from making decisions that could better your life? How can you change that now?

Jump to this post

@jenniferhunter I will ruminate over your question for a couple days. It really is a profound,
potentially painful question. Thanks for the therapy.

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@jenniferhunter

@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.

Jump to this post

@jenniferhunter Thank you Jennifer for sharing your story and trying to provide hope in the midst of challenging circumstances. I appreciate your reminder to advocate for what we need. That’s really difficult sometimes when you feel so lousy, but I’ll keep trying.

You asked about symptoms:

1. Overwhelming and totally debilitating Fatigue. I sleep 10-14 hours a day and never feel refreshed. This began about a year ago after my fifth spinal neck surgery. It was like someone flipped a switch one day. I used to be really active teaching and leading classes, providing spiritual direction and counseling. Now, a shower zaps all my strength in a day. A fifteen minute phone call with a friend requires 3 days of recovery. My husband tells people that my energy level has been at zero since my surgery, October 2019. AM cortisol levels have been consistently low but 2 cortisol stim tests seem to indicate that my adrenal glands are functioning. Still, I suffered a really extreme UTI a month ago that went from just showing symptoms to the worst I’ve ever had in just 3 hours. I ended up in the ER peeing pure blood. It was as though my body had absolutely no ability to fight infection. This scared me.

2. Nearly 60 pounds of unplanned weight loss. I’m really struggling to eat because I don’t feel well. Food can smell good and I can be hungry, but after 1 or 2 bites, I can’t eat any more and nothing tastes good. I try to eat anyway because I need the nutrition, but every day it’s a struggle. Even my favorite foods aren’t appetizing.

3. Just last week my primary care provider said that after reviewing several years worth of labs he noticed a pattern. He said I had “thick blood” – a consistently high red blood cell count and hematocrit and low lymphocyte count.

4. Daily chronic headaches. We initially thought these were a side effect of my last 2 neck surgeries, but now we aren’t so sure. I have undergone 5 cervical neck surgeries in the last 4 years. I am now fully fused between C2-T2 and have had rods placed in the back of my neck for stability. I recently went through my first round of Botox injections for migraines and torticollis/cervical dystonia. I lost a good amount of movement with this surgery and headaches were expected, but they may due to other issues as well.

5. Blood pressure variability – high one moment, too low (70/50) the next, with dizziness.

6. A profound sense that there is something terribly wrong. I feel off. I can’t necessarily point to why I feel this way, but I don’t feel like my normal self. Just once I would like to wake up in the morning and think “Wow! I feel pretty good!” Instead, after sleeping 12 hours I get up and think, “ it won’t be long before I need a nap. I’m still really tired.”

I should mention that my last neck surgery didn’t go quite as planned — as that’s the time frame when the extreme fatigue began. It was supposed to be a 6 hour surgery, but it actually took 8. The surgery went through the back of my neck and included the addition of rods which run from C2-T2 and involved the removal of a spinal cord stimulator that didn’t provide the pain relief we had hoped. My surgeon (who I love and trust with my life) punctured the dura while trying to remove a large amount scar tissue around the spinal cord stimulator paddle. This led to a spinal fluid leak that landed me in the ICU for 2 weeks as I experienced spinal headaches. In addition, I experienced severe pain post surgery. They utilized steroids to help decrease inflammation, but this led to the skin along the incision not healing and causing a sizable Seroma on the back of my neck. My surgeon was terrified that the seroma would become infected leading to sepsis, but thankfully that didn’t happen. Still, I had high CRP levels for months after the fact and I was on high dose antibiotics while we waited for the seroma to heal. After being discharged from the hospital, my surgeon actually made daily visits to my home to make sure I wasn’t developing an infection in my neck.

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