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.

@suzishep that is great news you have an upcoming appointment right after the New Year. I can understand how reading someone else's experience could cause you hesitation, however, that is just one experience among hundreds and thousands of success stories to consider. The Office of Patient Experience was established to allow for the one-off experiences such as you read above, to be improved and to create the best experience for each patient every time.

Can I ask what location you will be visiting on January 4th?

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@suzishep

I have an appt for the first time at Mayo in Rochester on Jan. 4th. Now I am wondering if it’s worth my time, money and effort to go. Praying you’ll find a treatable diagnosis!

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@suzishep Understandable your hesitation! I can tell you I have made the trek from Michigan 2x and I am so glad I did. I will not hesitate to go again should I find the need for expert medical advice.

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@suzishep I’m sorry if my post is causing you to rethink your trip to Rochester. Yes, even though I didn’t have a great experience at Mayo, I would still highly recommend you go and see for yourself if Mayo is the right place for you. Many, many people travel to Mayo each year, and most have a much better experience than I did. Please don’t cancel your trip because one individual didn’t receive the level of care they had hoped for. You may very well find the answers you need. And if so, I will rejoice on your behalf. I didn’t post to try to get others to seek care elsewhere. I was genuinely confused by my experience and needed to know if I misunderstood what Mayo offers patients.

Best wishes and I truly hope Mayo will be a terrific experience for you. Please reach out if there are other questions people can answer for you.

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My advice is never give up. Regroup and take your battle to your affliction. Find moments of inspiration to go at it a different way. I have received very good care at Mayo Rochester and Jacksonville. I've also seen specialists at Cleveland, and IU Health Indy. Take a nugget of positive movement from each visit. My perspective is you are in the end your best and sometimes only champion of your own health. You have the most vested interest to keep up the fight. Don't take no for an answer. Be the first to prove everyone wrong and find your way forward. I was given a slim chance to survive esophagus cancer to even live 1-5 years. I am in year 12. Never look back, be thankful, build on what makes you strong.

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@esophaguscancer

My advice is never give up. Regroup and take your battle to your affliction. Find moments of inspiration to go at it a different way. I have received very good care at Mayo Rochester and Jacksonville. I've also seen specialists at Cleveland, and IU Health Indy. Take a nugget of positive movement from each visit. My perspective is you are in the end your best and sometimes only champion of your own health. You have the most vested interest to keep up the fight. Don't take no for an answer. Be the first to prove everyone wrong and find your way forward. I was given a slim chance to survive esophagus cancer to even live 1-5 years. I am in year 12. Never look back, be thankful, build on what makes you strong.

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Hi @esophaguscancer, great motto "never give up." I invite you to also take part in the cancer groups here on Mayo Clinic Connect, for example:
– Cancer: Managing Symptoms https://connect.mayoclinic.org/group/cancer-managing-symptoms/
– Head & Neck Cancer https://connect.mayoclinic.org/group/head-neck-cancer/ (Esophageal cancer discussions are currently found here, although we will be opening an Esophageal Cancer group soon.)

There is also a monthly Zoom meeting for Esophageal Cancer support: https://connect.mayoclinic.org/event/esophageal-cancer-support-monthly-meeting/?date=2021-02-19
Welcome.

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@esophaguscancer

My advice is never give up. Regroup and take your battle to your affliction. Find moments of inspiration to go at it a different way. I have received very good care at Mayo Rochester and Jacksonville. I've also seen specialists at Cleveland, and IU Health Indy. Take a nugget of positive movement from each visit. My perspective is you are in the end your best and sometimes only champion of your own health. You have the most vested interest to keep up the fight. Don't take no for an answer. Be the first to prove everyone wrong and find your way forward. I was given a slim chance to survive esophagus cancer to even live 1-5 years. I am in year 12. Never look back, be thankful, build on what makes you strong.

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Thank you, @esophaguscancer for your inspiration. You’re right – we are our best advocates. Only we know the details of what’s ailing us. I’m really encouraged to hear your survival story and how you have outlived your illness timeline. I bet you have an interesting story to tell about how you’ve overcome the odds.

Of course, there are also times when we need others to advocate on our behalf. Since my earlier posts in this thread, I have been diagnosed with a severe case of ME/CFS Myalgic Encephalitis/Chronic Fatigue Syndrome and I’m struggling to find the energy to keep searching for help. Yet, I’m doing my best read through research studies as I’m able. Finding doctors who believe ME/CFS is worthy of their time is of course an ongoing challenge.

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