Who has had a bad experience at the Mayo Clinic

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.

[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.

[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.