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Can't Get 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.

Interested in more discussions like this? Go to the Visiting Mayo Clinic Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 26, 2020
In reply to @annielizabeth "What do you do when the office of Patient Experience won't help with a serious issue?" + (show)
@annielizabeth

What do you do when the office of Patient Experience won't help with a serious issue?

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@annielizabeth, Feel free to send me a private message or use this contact form https://connect.mayoclinic.org/contact-a-community-moderator/

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Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Nov 27, 2020
In reply to @faithgirl30 "@jenniferhunter Oh, Wow! Jennifer this is an absolutely amazing and reflective response to my post. It..." + (show)
@faithgirl30

@jenniferhunter Oh, Wow! Jennifer this is an absolutely amazing and reflective response to my post. It both brings me encouragement to see how deeply you reflected on my constellation of symptoms, and sadness because it was this kind of conversation I had expected to have with my doctor at Mayo last week. This was exactly the level of professional medical assessment that brought me to Mayo and it brings me hope that this kind of integrative reflection exists.

I will spend some time over the next few days reading carefully what you written, but thank you for what genuinely feels like an act of love. On this Thanksgiving day I am thankful for the ability to find compassionate, empathetic and caring people in some of the most unexpected places.

I read your story (thank you for sharing it with me) and I found great hope in your own story of courage and the ability to overcome great odds to discover healing and second chances through medical miracles. I’m so thankful you have regained the ability to paint and to utilize the vast array of gifts you have been given for the good of the whole world. Thanks again for writing the above post. It brought tears to my eyes.

Also, @roch i want to thank you for your question about a possible allergic reaction to the implants in my neck. There is now more metal in my neck than bones, and I think this is a valid question to explore. It’s not one I had considered until now.

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@faithgirl30 Thank you for your kind words. They brought tears to my eyes. I do put a lot into helping people who I think really need my help with understanding medical issues and getting past the fear. I am glad Colleen invited me into this conversation. Gratitude is very powerful, so pass it on every chance you get. You will have these conversations with your doctors so don't worry that it didn't happen on the first try. It will when you find the right doctor. You know what to do now. Write down what you want to discuss at your appointments so you won't forget. There is a saying that "love" is letting go of fear. Forgiveness goes a very long way too in helping you heal yourself. You are already ahead because you understand this. Let it be your inspiration to find inner strength and healing. You've got this, and we're here if you need support.

You might like this discussion about Art for Healing and you can find some pictures in my post on page 1 with Dr. Fogelson and his painting. Scroll down until you find it. https://connect.mayoclinic.org/discussion/art-for-healing/?pg=1#chv4-comment-stream-header
On page 20, you'll find a video of mine. https://connect.mayoclinic.org/discussion/art-for-healing/?pg=20#chv4-comment-stream-header
On page 24, you'll find a video of Dr. Fogelson's portrait. https://connect.mayoclinic.org/discussion/art-for-healing/?pg=24#chv4-comment-stream-header

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1 reply
annielizabeth | @annielizabeth | Nov 27, 2020
In reply to @jenniferhunter "@faithgirl30 Thank you for your kind words. They brought tears to my eyes. I do put..." + (show)
@jenniferhunter

@faithgirl30 Thank you for your kind words. They brought tears to my eyes. I do put a lot into helping people who I think really need my help with understanding medical issues and getting past the fear. I am glad Colleen invited me into this conversation. Gratitude is very powerful, so pass it on every chance you get. You will have these conversations with your doctors so don't worry that it didn't happen on the first try. It will when you find the right doctor. You know what to do now. Write down what you want to discuss at your appointments so you won't forget. There is a saying that "love" is letting go of fear. Forgiveness goes a very long way too in helping you heal yourself. You are already ahead because you understand this. Let it be your inspiration to find inner strength and healing. You've got this, and we're here if you need support.

You might like this discussion about Art for Healing and you can find some pictures in my post on page 1 with Dr. Fogelson and his painting. Scroll down until you find it. https://connect.mayoclinic.org/discussion/art-for-healing/?pg=1#chv4-comment-stream-header
On page 20, you'll find a video of mine. https://connect.mayoclinic.org/discussion/art-for-healing/?pg=20#chv4-comment-stream-header
On page 24, you'll find a video of Dr. Fogelson's portrait. https://connect.mayoclinic.org/discussion/art-for-healing/?pg=24#chv4-comment-stream-header

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It is easy for you to say to let go of fear. You are not in my place. Why don't I matter?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 27, 2020
In reply to @annielizabeth "It is easy for you to say to let go of fear. You are not in..." + (show)
@annielizabeth

It is easy for you to say to let go of fear. You are not in my place. Why don't I matter?

Jump to this post

hi @annielizabeth, the message to which you replied was from Jennifer to Faithgirl. Sometimes it can be confusing. If you are subscribed to receive an email notification every time a new post is made to this discussion, it can be easy to think that each message is directed to you. On a forum like this one, everyone sees each message.

You do matter. It is not easy to let go of one's fears.

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suzishep | @suzishep | Dec 15, 2020
In reply to @faithgirl30 "I want to thank each of you for sharing your stories and resources. I continue to..." + (show)
@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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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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1 reply
Moderator
Amanda Roe | @amandajro | Dec 15, 2020

@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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suzanne2 | @suzanne2 | Dec 15, 2020
In reply to @suzishep "I have an appt for the first time at Mayo in Rochester on Jan. 4th. Now..." + (show)
@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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faithgirl30 | @faithgirl30 | Dec 15, 2020

@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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EsophagusCancer | @esophaguscancer | Feb 15, 2021

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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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 19, 2021
In reply to @esophaguscancer "My advice is never give up. Regroup and take your battle to your affliction. Find moments..." + (show)
@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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