Who has had a bad experience at the Mayo Clinic

[atsin310]

We just returned from the Mayo Clinic in Rochester, MN and had a horrible experience, from start to finish. I was wondering who else has had such a bad experience as we did?

To summarize, my wife has an upper spinal lesion (C1-C3) and almost died 3 yrs ago. The lesion is tumor-like but has not yet been diagnosed as to the cause to this day. Prior to the spinal lesion being diagnosed, she had been sick on and off every year for the prior 10 yrs.  She had 2 sinus surgeries, lymph node removal, etc etc.  They passed her around from doctor to doctor, without a diagnosis as to what is causing all of the problems.  So, finally 3 yrs ago, the spinal lesion was found and was operated on twice in Los Angeles (not at Mayo) and was stopped (the insides have been destroyed), but the lesion is still present.  Since the surgeries, my wife has had several problems occur including tumors in her breast, her right side of her body is numb, muscle spasms, back pain, severe headaches, gastrointestinal issues, etc.  She is currently disabled and is in severe pain most days. So, after 3 years of going from doctor to doctor, only to not be diagnosed....we tried the Mayo Clinic.   We were hoping that a combination of Neurologists and other specialists would identify the cause of her past and current issues (possible autoimmune disorder, for example).

When we arrived at the Mayo in Rochester, the first Internal Medicine doctor to see her was a complete jerk. He did not read her history nor did he listen to her at all.  He was impatient, arrogant and did not seem to care about the patient (my wife) and her issues. So, they assign her to a number of doctors over the next 3-4 weeks.  Here is some of the important part of our bad experience --  They supposedly order prior medical records and pathology slides from your prior doctors to assist in the evaluation.  But, apparently someone didn't do it correctly the first day she was there....and the doctors were all asking for her records and slides.  So, after a week and a half go by, and still no slides or records, she takes it into her own hands and re orders the items to be sent. Meanwhile, the doctors seem to be clueless and not willing to read into her history at all nor could they do much without the slides, except for look into current symptoms.  So, there were 3 sets of pathology slides ordered (2 sets from the spinal lesion surgery; 1 set from a skin graft showing possible Scleroderma traits that just appeared on her back 3 months ago).  All of them arrive by week 2 and a half.  Then, the kicker....they lose the spinal lesion slide from her first surgery. This is a set of slides that are irreplaceable. It was taken from her spinal cord. You can not obtain a new sample.  The Internal Medicine doctor who is responsible for her case did not know the slides were lost until we had to complain to the office of patient. It was one of the nurse's at the front desk that told us they were lost.  So, by week 3, my wife has gone thru a number of tests, some were good, some were questionable.  Either way, the slides were lost. The doctors didn't take her seriously and shunned her away...again without any diagnosis.

Finally, a few weeks after she returns home. We get a letter from the Internal Medicine doctor summarizing the outcome.  It was interesting to note that he mentioned that they had found a few potential issues (more tumor-like issues) in her body. Yet, he also said she was just fine....yes, in the same letter.    Nothing was done and they left her untreated and undiagnosed.  

If this is an example of one of the best rated hospitals in the U.S., then I feel sorry for people going to bad hospitals. Because, the Mayo Clinic has been a complete waste of time, money and suffering.  We will be writing to several news papers, TV news, Medical Boards, etc.  We are also going to ask our attorney what rights my wife has.  I am sorry to say that I will never recommend the Mayo Clinic to anyone in my family.

Please share your bad experiences with the Mayo Clinic here in this blog forum.

[3dogs1cat]

Mayo in Jacksonville was horrible. Neuro doesn't care what causes the neuropathy even though it is in black and white, low level b vitamins. Tons of test. GI dr saw all levels are low and agrees can be the cause of many of my symptoms not just neuropathy and I was told to take a supplement. I do. I have no stomach and don't absorb! Return hime with same answers that I knew before I went. Low lab levels. No one listens and no one cares. Wanted to send me to pain management. Let's get another person hooked on pain meds instead of let's see how we can get her levels up. What happen to treating the whole person ?

[Mayo_Neurology_is_Horrible]

I would caution folks as well against the Mayo Clinic. I saw a young neurologist who wouldn't let me answer his questions - hyperactive or on some kind of stimulant - diagnosed me with brain lesions and nothing to worry about or get treated. Previously I had been diagnosed with MS by numerous Doctors and was having violent vertigo episodes. I figured the great Doctors at Mayo could help connect the dots.  Boy was I sadly mistaken.

My medical records were never reviewed by the nurses or Doctor - they took all my papers and put them in a folder. They are not online nor were they viewed. My complaint to their patient affairs email address after multiple trips, MRIs, balance/dizzy tests got me a standard form letter sent to my house, nothing more, two weeks after the email. So frustrating when I'm unable to drive or do anything with my kids.

I am not wealthy - huge regret as this was a complete waste. Consider the Cleveland Clinic - they are great from my brief experience and their scheduling takes care of everything for you (unlike Mayo, where that is up to you).

Some great Doctors but some really, really terrible Doctors get in there. I won't even begin to tell you the issues getting things scheduled weeks apart for one session (doesn't work well if you have to fly there). Worst place I have been, which says a LOT. Supremely disappointed - tried to open a BBB complaint but they said they don't handle - I have to contact State Medical Board.

At this point not worth the trouble - just warning others about this place. Look at the reviews online for the Doctors you get. Even at Mayo - some are absolutely incompetent.

[Bentleyalivia]

Don't let anyone try to discourage you into thinking it's not the mayo clinic that is terrible. They are the absolute worst. More people need to speak up about them. I moved to the Minnesota area for the so called world renowned healthcare, only to quickly realize that they are nothing but ******* trying to fill their pockets. They are a disgrace. DO NOT MOVE HERE FOR THE HEALTHCARE!! I don't have experience with the main hospital in Rochester but I caneed tell everyone that the mayo clinics scattered around MN are absolutely horrible. I am trying to tell as many people as possible to stay away from the f***ed up institution.

[Grayfancy]

I just returned from Phoenix Arizona mayo clinic. I had I appointment there for Dr.Byrne in hepatology. I have a 6.1 cm tumor and two other large tumors in my liver.  I looked at the CT scan of my liver and it scared me. I went there for I biopsy and I treatment plan. The first meeting with Dr. Byrne  was a nightmare. We never got started on any kind of a treatment plan because he would not do a biopsy. He did a MRI and colonoscopy. My liver is in extreme pain in my liver is enlarged. The first meeting with his doctor was about 45 minutes because he was trying to convince me not to have a biopsy. I went to the complaint department because I could tell we were getting off on the wrong foot. The girl that took the complaint was a joke. She was not there for me, she was covering the doctors butt. I called John Noseworthy in Minnesota and could not get through to him in anyway. There is no CEO are executives at Mayo to complain to. The way I look at it if you don't have a proper complaint department to respond to complaints, you don't care! Mayo is highly overrated! If this point I would not take a animal to this place.  Mayo is riding at her right now but with this kind of treatment they won't be riding how long. Doctor Byrne  was a arrogant and professional doctor.  The treatment plan was MRI and colonoscopy. I leave Arizona mail clinic in extreme pain with my liver and stomach swollen. I have been diagnosed with metabolism. My stool and P is turning yellow. My liver has stressed my body to the point I am starting to have A fib and heart problems. I don't expect to live another year. Mayo hepatology department in Phoenix Arizona has my blood on their hands! John Noseworthy in Minnesota could care less about my health care! This was not a mistake it was deliberate bad treatment!

[Kay10k]

Yeah. My husband and I had our son about 4 (coming up on 5 months now) ago at Methodist Hospital and went to Mayo Clinic here in Rochester. At Methodist the nursing staff filed a complaint about my husband and I with Child Protection and CPS knocked on our door two hours after we arrived home with our son. But that's another story. At Mayo Clinic we saw the Neurologist because there were concerns they had about the size of his head saying he wouldn't be able to lift it. We had an ultrasound done on his head before this and the results came back that everything was fine (not too much fluid which they say can cause abnormal head growth) but since they found out my husband has Cowdens (an intestinal disease where there are polyps throughout your intestine) they're concerned that our son could have it and that it's causing his head size and low muscle tone in his arms. Not only this but the Neurologist said that it could cause a tumor in his brain and she was smiling as she said this, as if she was happy about it. And the Neurologist said it without even doing a test or getting an actual diagnosis. Prior to this a nurse named Kellen Lambeau not only made fun of my husband because of his head size but made us come back for a weight check even though she knew we had a public health nurse and baby steps worker checking his weight and sharing it with the hospital. They were abusive, rude, demeaning, and insensitive. They called my husbnd a know it all, painted him as emotionally abusive toward me even though I made it clear the emotional abuse was from my sister (because they asked at Methodist if I had ever been abused), and said that I had possible cognitive function impairment without even running a test or doing a brain scan. I wouldn't send anyone to Mayo Clinic either, particularily not to Neurology. They had us one day in the pediatrics department from early in the morning to well past three in the afternoon and would not allow us to leave and schedule the second appointment after the consultation for the day after. A nurse ran out when we tried to leave (patient experience told us we could and after my husband called them) and was rude and angry and told us they were going to bring us into a back room. It was as if she was speaking to a child who was going to be punished. There's so much more but long story short Mayo Clinic (and Methodist Hospital's) bedside manner is severely lacking. It's all in service of retaliation against us because my husband stood up for us at Methodist hospital after our son turned blue after his first breastfeeding because they had'nt cleared the amniotic fluid out of his lungs properly and when my husband asked one of the staff at Methodist to come over to me and explain what they were doing and that everything was going to be okay (I was terrified and couldn't get up because I had an epidural) they got angry with us both. Don't go to Mayo Clinic. They will treat you as less than a human being.

[tt0t250]

Mayo Clinic is Rochester is one of the most fragmented, disorganized institutions on earth.  I had a horrific experience there as well in 2014.  I flew from Miami and was told to plan to spend 2 weeks there.  After committing to airfare and hotel, I arrive and they have one appointment scheduled - basically tell me to fly back to Miami and return when they can schedule more appointments.  Of course, I do this and return only to have them mess up the schedule again and tell me to fly home and return in 3 weeks - which I didn't as I'd spent over $4000 in airfare and hotel at this point for me and my wife..  Their "OPS"  (Office of Patient Services) got involved and apologized.  In 2015, we called OPS and they agreed to try again and promised to handle everything.  One week later, we get a schedule reflecting 5 appointments in 3 different months!  Once again an apology.  What is most disheartening is that, in 2014, after seeing 5 of their specialists (none of who communicated with each other in any detail), I was sent home without a diagnosis.  In 2015, they suggested repeating all of the same tests.  The internist and cardiologist were both distant and seemed rushed.  The cardiologist diagnosed me as having "no heart issues" without any explanation for my symptoms.  Overall, it cost a lot of money and time.  They might be effective if you have a textbook case....but so would my regular doctors locally in Miami!  

[allmymarbles]

I don't think you can fault the Mayo Clinic for not coming up with a diagnosis, but the incompetence is something else again. That would infuriate me, especially given the outrageous cost of medical care.

My daughter, from the ages of eight to 12, was a semi-invalid. No diagnosis and I took her to top-notch doctors. The greatest part of the problem was that no one listened to me. I said it was due to an accident; the "experts" said it was an infection and ignored me.

So, for the first time in my life, I went the alternative route. Within three weeks my daughter was pain free and moving normally. A few months later she was riding a bicycle. The advantage to alternative MD's (and I mean proper doctors who also practice alternative medicine) is that they listen to you and don't treat you like an idiot.  

[ud1uhgz99ma8]

Mayo clinic neurology is appalling. They are in network with my insurance company, my primary care doctor said I needed to see a specialist. They denied me an appointment saying the care I had already received was adequate, despite my primary care doctor telling me to go and see a neurologist. Ended up going to the University of Minnesota which was a great experience and much more professional.

[gonetopots]

Unfortunately, my experience at the Mayo Clinic wasn't great. I wouldn't say I had a negative experience, but they missed some very big things concerning my health. They did a lot of testing and told me i "just had POTS". And then missed my underlying Ehlers-Danlos Syndrome, my Intracranial Hypertension, my chiari malformation, and my craniocervical instability.

It goes to show that no hospital is perfect. I made a video sharing my experience there: https://youtu.be/tq0eKd3PiFE

[not_a_Mayo_fan]

My family member had a transplant at Mayo in Rochester in 2018. I found this thread because we've been mortified by how awful my family member's experience has been, especially given Mayo's world-renown reputation.

Disorganized. Inconsistent. Arrogant doctors. Focus on their "way" of doing things rather than the needs of the individual patient. Surprisingly antiquated views on progressive treatment models. Factually inaccurate medications lists. Forgetting that my family member's transplant was slightly different than the norm. They "lost" my family member one day during or after an endoscopy; we got several different answers as to whether the endoscopy was done and if our family member was in recovery or what.

On more than one occasion, the same doctor, nurse, or staff person contradicted themselves in the same conversation.

We couldn't get straight answers, even to simple questions. This became very frustrating, as recovery after a transplant includes meeting several milestones along the way. Every time we thought we reached a milestone, we were told, "no, that isn't the milestone, this is the milestone." One emotionally crushing blow after another as we tried to progress through recovery. I believe it significantly impacted my loved one's recovery.

[bob65456151]

Be careful.  Mayo is number 1 because they play dirty and manipulate patients.   It is well known in Rochester that nobody ever wins a case against the mayo cartel.   They never admit they are wrong and change medical records and drop patients.   They dont spend much time with patients and never review medical history because they want to see as many patients as possible in the shortest amount of time.  When they get really lazy they will say it is all in your head and label you mentally ill.   They train the staff to believe that 40% of all the patients are hypochondriacs to justify this.   The more they screw up the more $$ they make and fake diagnosis they can string the patients along with.  All the big drug companies use mayo to test all their drugs  and corner the market as they control the FDA too.    It is a big revolving door with Mayo, big pharma, and FDA to make sure the rates are as high as possible and patients have record disease rates year after year.  

Studies show that for everyday ailments your normal doctor in smaller areas are just as good.   If you have a more complex disease, go to a university where you are more likely to find better talent because the average mayo doctor doesnt have that great of resume since they just cover up their mistakes.   I got a professor when I swiched from Mayo to the U of M and much more intelligent answers.   Plus my MD had 2 DUIs at mayo who screwed up my care.

[caregiver222]

I am the last person to defend hospitals, but an anecdotal experience is not sufficient to condemn an institution. I am sure there are patients with many positive experiences at the Mayo.

Physicians are human and bureaucracy exists everywhere. The handling of slides and specimans is a problem everywhere.

You have my sympathies, because it is clear your wife did not receive appropriate care, but that fact is, this could happen in any hospital. It's the "nature of the beast". Medicine is not perfect, nor are institutions.

This not a "blog forum", but a place where patients ask for information regarding their diagnosis and treatment. Not to rag on specific institutions.

And in any specific case there are often a "lot of missing pieces".

Your wife has my sympathies.