Connect
My Disappointing Experience at Mayo Clinic Rochester
I’ve debated whether to share this, but I feel a responsibility to let others know what happened to me at Mayo Clinic in Rochester. I had high hopes and trusted the reputation of Mayo, but my experience was frustrating, expensive, and ultimately unhelpful. I hope by sharing my story, I can help someone else avoid going through what I did.
After struggling for several years with food sensitivities and a mix of troubling symptoms (some typical, others unusual), I submitted a request to be seen at Mayo. The next day I received a call from an intake specialist who reviewed my records in real time. She found something concerning and scheduled me with the gastroenterology department two weeks later. I was so relieved—finally, someone seemed to take me seriously!
I read all about Mayo’s “Patient-Centered Care” approach: a world-class team of specialists working together in one place to listen to your story, understand your goals, and provide a comprehensive diagnosis and treatment plan. Unfortunately, that’s not what I received.
I took time off work, drove over 8 hours, and spent thousands of dollars on lodging, gas, and preparation to be there for 5–7 business days as advised. I carefully filled out my health goals on the online patient portal and typed out a detailed page of my health goals and symptoms to ensure I communicated clearly with the medical team.
When I arrived, I had some labs done and then went to my first appointment in Gastroenterology. I waited an hour past my appointment time. A resident doctor came in, glanced at my records, and immediately offered a diagnosis. He was ready to send me home after just one additional test—far from the multi-day, multi-specialist evaluation I was told to expect. When I mentioned other symptoms, he dismissed them as unrelated (without much explanation as to how he knew that). I handed him my typed sheet of health goals and symptoms, hoping someone would take a broader look, while he stepped out to speak with the attending physician.
After a while, the attending physician joined us. He agreed to run a couple more tests but also downplayed my concerns. Again, I tried to share information about my full range of symptoms, and again I was told they likely weren’t related.
Due to delays in Gastroenterology, I arrived late for my radiology appointment. I was told no one had called ahead, despite the gastro team promising they would. Thankfully, radiology still saw me.
Growing uneasy, I contacted the Office of Patient Experience, explaining that only one department was involved in my case and that I had broader issues that might not be solely gastrointestinal. They said they'd look into it, but it could take several days. Meanwhile, I was losing valuable time and money—waiting without knowing if any other care would be coordinated.
Then, I got a call from the resident doctor with my test results. A few hours later, the attending doctor also called with results—but they were completely different from what the resident had told me. Worse, neither seemed familiar with the imaging results when I asked questions. The attending doctor also hadn’t seen the list of symptoms and goals I had submitted online and handed to the resident.
I asked for a referral to the Food Allergy Clinic while I was still in Rochester. He refused, saying they were waiting on other test results. I waited over two weeks for those results—only to be told that the lab couldn't use the blood samples collected during my visit. No one at Mayo notified me about this until I followed up. I suspect the test was never ordered, but I have no way of proving that.
Since returning home, I’ve stayed in contact with the Office of Patient Experience. They’ve apologized and promised to review their processes and “do better in the future.” I appreciate the acknowledgment, but it’s hard not to feel like it was a standard response.
Final Thoughts:
I truly wanted Mayo Clinic to be the answer—I believed in their mission, their reputation, and their approach. I trusted them. But my experience left me with no answers, two conflicting diagnoses, lost time, lost income, and thousands of dollars in expenses.
Please advocate for yourself from the moment you walk through the door. Don’t assume everything is coordinated behind the scenes. Don’t assume anyone has read your records or submitted information. Speak up early and often.
Unfortunately, I didn’t get the care I expected based on the Mayo Clinic website claims. I hope you do.
Like
Helpful
HugInterested in more discussions like this? Go to the Visiting Mayo Clinic Support Group.
Connect
@lorimuir, I appreciate your sharing your experience at Mayo Clinic. Thank you for reporting the matter to the Office of Patient Experience. It is regrettable that your visit was not what you expected and that it didn't live up to Mayo Clinic's mission. I can only imagine that you are gutted (no pun intended) after investing not only dollars and time, but also hope. That's hard.
Your tips are well noted about advocating for yourself. Will your case be reviewed to reconcile the differing diagnoses? What is next?
-
Like -
Helpful -
Hug
3 Reactions@colleenyoung after leaving Mayo Clinic I have not continued care with them. After receiving two different diagnosis I've lost all trust. I've heard great things about the Cleveland Clinic and may try them. To be honest, I'm really disappointed with my experience and haven't been able to move forward yet. Obviously, finances play a big role in if/when I will be able to seek other treatment. I requested a price adjustment from the Office of Patient Experience, they have ignored that request. I'm in shock, I've heard so many great things about Mayo and I didn't have that experience at all.
-
Like -
Helpful -
Hug
4 Reactions@lorimuir
Hated to read your experience. When a patients is under so much stress and anxiety over a health issue adding more stress and anxeity really does not help.
I know you said you were done but consider contacting paitent advocacy again with your full story. I know you no longer want to consider Mayo but your report to patient advocays can help that office worked with providers to see what went wrong. It is my understanding that when you complain about a division of Mayo that complaints goes to the head of the department from patient advocacy.
I did this many years ago through advocacy (spell) so my post comes from my experience with this. Patient Adocacy was great but the response from the head was not. But this disapointed in Mayo only has come from one division not my experience with all other divisions.
I am a patient at Mayo. I was seeing a PCP and psychiatric medication specialist/counselor who turned out to be trainers to doctors on patient communications and interface.
They took my interaction saying the way I was communicated with in their opinion should not have happened. They said shows they needed to focus do more on their ongoing training on this subject. They told me wouls address my negative interaction through their training program.
Cleveland Clinic is outstanding medical instution. My wife went to the one down in West Palm area. The diagnosed her with cause of her migranes. No other specialist at other medical facilities were able to diagnose the cause and the diagnoses. This diagnoses allowed them to provide treatment plan and resolved it.
Keep trying and again sorry for your interaction at Mayo Rochester as I promote going to them in my post.
-
Like -
Helpful -
Hug
4 ReactionsI had a similar experience in GI. I am a patient with doctors in several different departments & have had great care. My child, also with the same challenging genetic condition as me, had terrible GI issues so I was able to get in her into GI. Without going into it all we basically had the same experience with a resident and attending physician. Dismissed her from the start and sent on our way. I didn’t know there was a patient experience person I could call thought. It was a total waste of time and money for us too. I’m so sorry you had this experience from the start.
-
Like -
Helpful -
Hug
1 Reaction@jwool89 I am a Mayo Rochester patient. I have seen a local (near where I live) Mayo trained gastroenterologist recently and she was wonderful and she asked questions and took interest in helping with other issues beyond just her specialty. The information a patient provides and the way you communicate with your doctor matters. They are forming an opinion that starts with what a patient says. If the clinician doesn’t get accurate or complete information, they are working with a disadvantage. It helps to know what information might be important to share. I can’t speak to someone else’s visit, but all of my experiences at Mayo have been stellar.
-
Like -
Helpful -
Hug
2 Reactions@jenniferhunter I have a challenging health condition and many years of seeing specialists so I know how to present information and accept their recommendations in a professional, non-judgmental manner. I speak highly of my specialists at Mayo Clinic Rochester and have recommended them to many others suffering from my condition. Unfortunately in medicine, no matter where you go, you are going to experience less than stellar treatment at some point. Unfortunately this one situation was there. Instead of complaining I found our child the care that she needed without making it a huge deal at Mayo. This is why medicine is individualized, and I am fortunately in a position to have a choice.
-
Like -
Helpful -
Hug
1 ReactionI'll have to add mine. I'm probably one of the few who has gone through both Mayo (Rochester) and MD Anderson. Several years ago, I had surgery on both common femoral arteries. Unfortunately, both sites became infected with E. Coli, so there was follow-on surgery and months of IV antibiotics. I was left with severe lymphedema in both legs, so I got a referral to Mayo from my surgeon, who had trained at Mayo. I was accepted and assigned to a surgeon. I was not happy with the assignment, which was not to the surgeon on staff who specialized in the bypass procedure I wanted, but to a general plastic surgeon. I called, asking for a transfer and was told that it would set back my entire schedule by several months, so I acquiesced. At Mayo, I went through a multi-step process, being assured along the way I was a good candidate. Finally, I met with the surgeon. It was about a 15 minute interview, he in his scrubs, obviously between procedures. Basically, he lectured me on why I shouldn't even be considering the bypass procedure at my advanced age and dismissed me. I felt very much I had been "bait and switched," after the max amount had been extracted from me and Medicare.
Now, for Anderson. Early this year, I was diagnosed with esophageal cancer. Mayo didn't even cross my mind. Over the years, I've represented scores of doctors and heard consistently that there was only one place to go - MD Anderson, and I was accepted. My case could involve three different disciplines - surgery, radiology and medical oncology. I med with my three doctors FIRST, not last. That was one big difference. I had already mentally dismissed surgery, based on age, side effects and probable benefit. The surgeon bowed out graciously. Only then, did I begin the round of tests and got all good news. The cancer was confined to the esophagus, no distant lymph nodes involved, etc. My two-month checkup after therapy (chemoradiation, with proton radiation) was very strong and I go back for my six-month in less than two weeks, so I'm very hopeful at this point, as they had been at two. To me, at least, for cancer, there's not much of a choice. I'd do exactly the same.
Now, for failings of both, and I suspect most large such institutions. Don't ever assume that the right hand knows what the left hand is doing. If your malady or maladies involve more than one department, make sure they're communicating. It will take some effort on the patient's part. They both seem to resemble more a collection of semi-autonomous fiefdoms than integrated wholes. They have departments, like scheduling, trying desperately to coordinate the entire effort, but the patient can't assume it will happen automatically. You need to be your own advocate and make a nuisance of yourself, if necessary. This is my unvarnished opinion and experience. YMMV...
-
Like -
Helpful -
Hug
3 ReactionsI want to start by saying that I’m a very positive person, and this post feels more like a complaint and that's not the direction I want to go. That said, several people encouraged me to post this to help others—especially future Mayo patients—understand the importance of advocating for themselves. That’s the reason I’m sharing my experience.
I should also mention that, outside of the two GI doctors I saw, the rest of the Mayo staff were truly outstanding. Everyone I interacted with was friendly, professional, and helpful. During one of my tests, I experienced an emergency event, and I was amazed at how quickly a team responded—an ambulance even arrived. They took my health seriously, and I’m incredibly grateful for that.
That’s why I was so surprised and disappointed by the care I received in the GI department. I begged the attending doctor to look at my medical history and send me to other divisions and he refused, telling me he was waiting for a blood test result before he would send me elsewhere and I should go home for now. Unfortunately, the problems didn’t end after I left. I had been told that blood test was being processed, but when I followed up a couple of weeks later, I was told they couldn’t run the test after all—likely because it hadn’t been properly ordered and the blood was no longer usable. They offered to have the test done locally, but at that point, I declined. It just felt like it wasn’t meant to be, and I gave up and cut my losses.
For those who mentioned the Office of Patient Experience, I want you to know that I did continue to work with them for several weeks. My mom even sent letters to board members and Mayo’s CEO. We’ve received multiple responses expressing regret, acknowledging that mistakes were made, and promising improvements in the future. I truly hope that’s the case.
My message to future patients is this: don’t wait for them to coordinate care across departments—bring it up on day one, at your first visit. Even though I did exactly that, and even though I had filled out all the patient portal information and handed the doctor a detailed, typed medical history, my concerns were still overlooked. That paper was never referenced, and I left feeling like a number rather than a patient.
If this helps even one person avoid the same frustration, then sharing it was worth it. Thank you again to everyone for your support.
-
Like -
Helpful -
Hug
4 ReactionsThank you. I’m worried the same is going to happen to me as my issues are much broader than they probably realize. What steps should I take to make sure my symptoms are addressed
@kathyann0811 Welcome to Connect. Come to your appointments with an open mind and ready to ask educated questions. First, define what your biggest concern is and if you need a specialist, what specialty is the right place to start? If you come in with undefined problems and seeking help for pain without an underlying cause diagnosed, it will be more difficult for a specialist to help.
Look up information about any diagnoses that you have so you understand them. Write down questions you have to bring to your appointment. While you are at an appointment, if a question comes up, ask it. Do as much as you can to provide accurate information to your specialist without overwhelming them with lots of medical history that isn't relevant to the reason you are here now. That will waste time. Research specialists that you want to see. I chose my spine surgeon at Mayo after consultations with 5 local spine surgeons failed to find the correct diagnosis. It can be trial and error to find the right doctor sometimes. If you have new symptoms, keep an accurate diary of when it started and how fast it is or is not changing. If you need the help of a general family doctor to help you narrow down the directions for your health care, seek and ask questions with your primary care doctor. Generally speaking, it is probably easier to get into Mayo with a specialist for a defined problem that that specialist can address. Many people try to get help for neuropathy and overwhelm the capacity of Mayo to accept that many patients.
This discussion may offer more tips on seeking appointments with specialists.
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/
-
Like -
Helpful -
Hug
6 Reactions