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Here’s a summary from a recent patient story: At 76 I was diagnosed with a 3.5 mm brain aneurysm. I went to Mayo for another opinion. Today, I’m playing golf, cooking for my family and having a good life.
March 4, 2010 at 5:36 pm |
My previous comment was my overall opinion of Mayo Clinic. I may have given the impression that i think they are perfect. I have never found a doctor, hospital, or anyone else that didn’t make mistakes. That includes Mayos. I have been upset many times with the Clinic but i still trust them to do the absolute best they can to help me.
March 3, 2010 at 5:30 pm |
I have been coming to Mayo Clinic Rochester since 1988 when i brought my wife there for treatment. I was so impressed that later when i had problems i came to Rochester. I have never been disappointed with the care i have been given. When i walk in the door i relax completely with the knowledge that no matter what i am at the right place. Since 1988 i passed my experiences at Mayos on to all my friends and even strangers. I hope that i have helped them to go to Mayos and help themselves.
March 3, 2010 at 1:40 pm |
I suffered from headaches on a daily basis from October ‘09 – Feb.’10 that were deliberating. I had many days that I couldn’t get out of bed due to the pain. I went from from doctor to looking for help. I went to at least 4 doctors and had many tests ran & still had no answers. One of the doctors finally referred me to the Dr. David Capobianco. He ordered blood tests, MRA & MRV on the 1st visit. I had to wait on my insurance to approve the MRA & MRV. Dr. Caponbianco called me about 20 minutes after the test with a diagnosis. My husband and me were so impressed with the quick turn around time. I had low spinal fluid pressure. He recommended me getting a blood patch. Dr. Caponbianco put the request in to get me an appointment for the blood patch, but the clinic didn’t have an opening until 3/2. I called the Pain Clinic and requested to be put on the cancellation list, but hadn’t heard from anyone. Dr. Caponbianco called me to see how I was doing. I had a very bad weekend. I wasn’t able to eat nor get out of the bed. He called the pain clinic and was able to get me in the following Monday for the blood patch. The blood patch worked and I have been feeling great. Dr. Caponbianco called me two times after the patch to see how I was doing. We have been so impressed with him. He is so personable. I would recommend him to anyone that needs a Neurologist. As a matter of fact, I have already recommended him to a lady that works with my husband.
February 2, 2010 at 4:35 am |
In June 2009, while checking a spot on my lung, the image caught the top of my kidney. Further examination reveal that I had kidney cancer. It was very early and was surgerically removed. Fortunately, I did not need chemo or radiation treatment.
I feel very fortunate becasue kidney cancer does not have warning signs. I appreciate my care coordinator,Ann Thompson, the Radiology and the Urology Departments
December 24, 2009 at 8:25 pm |
In January, 2009 I was diagnosed with thymoma, cancer of the thymus gland, a rare cancer. I was 57 years old and had been in excellent health. Prior to my surgery, the local thoracic surgeon assured me that the cancer was benign, hadn’t spread and was totally outside the pericardium, the sack around the heart. When he performed the surgery, he found that the majority of the softball-sized tumor was inside the heartsack, with the rest of the tumor growing through the pericardium. The tumor was cancerous and had spread to the left lung, necessitating the removal of a small portion of the lung. Unfortunately, the tumor was encasing a portion of the left phrenic nerve so the nerve was severed resulting in the left diaphragm no longer being functional.
C/T and PET scans after surgery showed that cancer remained at the pulmonary artery, at the right hilum and in the lining of the lung, making it stage four cancer. Chemotherapy reduced some of the cancer. Radiation was being considered, but the thymoma specialist said that no matter how much the radiation might shrink the remaining tumor it would be impossible to ever do surgery to remove it. He said that my tumor could not be removed without also removing my right lung and that I most likely would not survive that surgery, but if I did survive I would be a pulmonary cripple. I was terminal and not being given any options.
It was at this time that I called Mayo Clinic for an appointment. I was given an appointment in 2-3 weeks. I needed confirmation of the dismal prognosis, or some hoped for options. After some tests August 11 and 12, I met with the Mayo oncologist and surgeon at 4 PM, August 13. Dr. Deschamps told me he could remove my tumor, and just my tumor. Surgery was scheduled for the next morning when he successfully removed the tumor and I am now in remission, cancer-free. I have no doubt that Mayo Clinic saved my life.
December 10, 2009 at 10:56 am |
The Mayo Clinic saved my life, I retired in Feb 06, In March, I notice I was feeling poorly and my ear was half it’s original size. By May, I was going blind. June , I had blisters and liesions all over me. August, huge lumps all over my body, and by Sepetember, in the hospital with what I thought was a heart attack. I had been to 16 doctors and three hospitals in the Atlanta area, No one had clue. I was blind, couldn’t walk, breathe, or take care of myself. I went to the Mayo Clinic in Nov and Dr Steven Yetterberg took the lead. After a week of exams from various Docs, I was told I had Relapsing Polychondritis an auto immune system problem. I was given a treatment schedule and returned tho Atlanta. The good folks at Emory picked up from there and I am happy to report, that after 5 cornea trans plants ,Dr W. Barry Lee, and a lot of chemo theapy Dr. Robin Geleka , I am back. I can walk, see, and even play a round of golf. Thank You MAYO CLINIC.
October 6, 2009 at 4:15 pm |
Just as the previous poster had great hope that the Mayo Clinic would determine the cause of his wife’s illness, my husband and I also shared that same hope. I have had a variety of problems and pain for about 6 years and no one doctor has been able to pinpoint the cause. They have run batteries of tests and, while some tests came back with definitive findings, the doctors were uncertain how to treat me.
After doing weeks worth of research this summer, we found that the Rochester Mayo Clinic had a sub-specialty that deals with these types of problems. Even though we were uncertain if the office was the correct one, the phone triage staff twice told me that, even if it is not, they would send me to the right place.
Unfortunately, after about 30 seconds of meeting our primary physician, we knew that we were going to be greatly disappointed. She introduced herself and then said, “I don’t know why you are here. You are in the wrong office.” She had not read through my history before my visit (which I was told she would) nor did she look through any of my previous medical records until she was in the room with us. Despite the test results and my doctors’ findings, she disagreed and said she did not think there was a problem at all even though this was not her specialty.
To appease us (because we must have looked shocked having driven half-way across the country to be dismissed so quickly), she ordered several tests and made an appointment with another physician. We appreciated the time that the other physician spent answering our questions even though she was unable to determine the cause of the problem.
Since the tests came back normal, my husband and I both pressed and asked questions in the final meeting with our original doctor trying to determine the cause of my pain and other symptoms. She had no answers and asked if we wanted her to order additional tests. It really appeared to us that she was appeasing us versus trying to find the answers to my symptoms.
We were greatly disappointed since the Mayo Clinic is supposed to be the best in the country. It was set up in such a way as to get to the root of a patient’s illness even if that root is hard to find. Unfortunately, while we appreciate the friendliness of most staff and know the Mayo helps many ill people, their system did not work for us at all.
October 6, 2009 at 5:01 pm |
Well Jennifer your experience sound like the usual run around that is prevelent in todays “Modern Medicine”
It is a crap shoot that depends on the Doctor you start with and who they “know”
In my opinion, you would think and expect that Mayo would have a better system that would not allow failure in such a cavalier fashion knowing that a patient puts a great deal of time and money and HOPE into their journey to Rochester.
As I said in previous posts, it seems Mayo like others in medicine pick the “low hanging fruit” and if a diagnoses isn’t revealed in a couple of referrals then it’s goodby to you without even a suggestion of what or where to go next.
No one is rewarded to take ownership of your problem so no one does.
Good luck to you.
Sam Leonard
September 4, 2009 at 7:53 am |
I left Mayo Clinic in Rochester disappointed in their service.
My wife has had chronic pain for nearly 5 years. The pain is located in one area of the body and has progressed from a random flareup to a now constant dibilitating pain. Threfore we went to Mayo last month.
We were in Rochester 23 days and she went through a number of tests. Some tests showed some abnormalites but the Doctors felt none are cause of her pain.
Once finished they told her to live with the pain and go to a pain clinic. GOODBYE
I could not beleive that Mayo would give up their search for the cause of her pain. We even called back and begged one Doctor to rethink what could bedone next. Their answer was that the Doctor and his PA would review and call us back. We waited several days and no answer came so we left town.
She continues to suffer terribly and we have no idea what to do now. We know that somewhere there is a doctor that knows how to find the answer.
My conclusion for Mayo is that they are a beautiful organization, very efficient, very busy and successful, BUT seem only interested in the “Low hanging fruit” that pass through their doors in hoards on a daily basis. Once they see that the soluition is difficult it is GOOD BYE to you.
September 4, 2009 at 1:18 pm |
I’m sorry to hear about your unsatisfactory experience. I have forwarded your note to a colleague in our office of patient affairs, and she will be following up with you.
September 18, 2009 at 9:11 pm
I was contacted via email by the Supervisor of Patient Affairs on 9/4 so I called her on Tuesday 9/7 and told her most of the details regarding my wife’s disappointment with the outcomes at Mayo.
It was about a ten minute call. I gave her patient number and name and she said she would get back to me.
So here I am 11 days later and no response from her.
I really didn’t expect much from her but a pat on my butt anyway. In my opinion Mayo has a system problem that is not the fault of the doctors we visited. They did their best.
Our “vision” of Mayo was once accepted into the “Gold Standard” of medicine for the entire world that we would not be let go until Mayo had exhausted every avenue to research my wife’s condition. After 5 YEARS OF THIS CONDITION WORSENING WE WERE VERY HOPEFUL WHEN MAYO ALLOWED US TO COME TO ROCHESTER
Instead we experienced what I would expect in small town USA. 1. Assigned to one Internal Medicine doctor.
2. Referred to a couple of other doctors who had no answers but “knew someone that might know” and after a third Doctor could not reach a conclusion we were sent back to Internal Medicine to be dismissed.
Why would Mayo allow us to leave without our case being escalated to a higher level? Perhaps to specialists who are not bogged down like the Doctors we visited who have a heavy schedule of appointments and live in a Medical World of Billable Procedures only and no time for research. They either have an answer or they don’t.
Why would the top Medical Institution in the World run us through a small “Loop” of Doctors and call it quits?
Where’s the pride?
Where’s the medical professional that says “There must be someone that has seen this problem before”
“What more can we do”
“Who can we network with to broadcast this special case”
“How can we make the patient feel we care and are doing all that is possible to reasearch this and are not going to give up”
How could we be let out of there without even a refferal to another institution that might be of help?
This has to be done on a systems or Policy level
Thus I explain my previous comment that, in my opinion, Mayo is picking the low hanging “Billable” procedures but,….. present them with a difficult pain complaint which is localized to one area of the body and once they run out of “Billable” ideas it’s out the door for you.
Now I even more disappointed when the patient affairs Dept drops the ball on our case.
Less than a week after leaving Mayo my wife had to go to a local emergency room suffering from dibilitating pain and spasams. She was given a injection of Muscle relaxer and Predisone. Plus a three week regimen of heavy doses of Predisone which has been helpful in reducing her pain to a more tolorable level. This emergency room gave my wife more releif than Mayo Rochester did in over 3 weeks.
I still hold out hope that your institution will continue to explore an answer to reach a diagnosis and cure of my wife’s condition
August 1, 2009 at 6:35 pm |
On 7-9-08 I was transported from another hospital ER to the Mayo Clinic in Jacksonville, I had a sudden onset of a bad headache.The cat scan showed a subarachnoid hemorrhage. On 7-10-08 I had a craniotomy (brain surgery). From my admission to my discharge the staff was very caring and supportive. The chief of neuro did my surgery, THANK YOU DR. WHAREN for saving my life! Because of God and Dr. Wharen I am a miracle and I’M ALIVE AND WELL. I had my one year follow-up on 7-28-09, I’ve recovered 100%.
June 22, 2009 at 2:56 pm |
Mayo Clinic saved my life by doing absoutely nothing !!! At the age of 76 I was diagnosted with a 3.5 mm brain aneurysm and was told by a Neurologist that I had two choices, both involving major surgery. I went to Mayo for another opinion. They told me that I had three choices. The third choice was doing nothing. They were doing a study of small brain aneurysms and found that more people were lost to surgery than not. So, three years later, I am still playing golf 3 times a week, cooking for my family and having a good life. My MRA’s show the aneurysm to be stable. Thanks to Mayo Clinic for doing nothing !!!!!
June 20, 2009 at 10:51 am |
I want to thank Mayo clinic for helping to understand disease I had been given wrong information about when I was diagnosed a few years before. Fibromucular Dysplasia is not well known but I was able to go to Mayo and they explain it so I have a better understanding.
June 18, 2009 at 8:43 pm |
I’ve been trying to decide if I should bring my husband up there, but I don’t want to spend all that time and money to be told the same thing other Drs have told me. How do you know when to go?
June 17, 2009 at 11:27 am |
I went to the hospital with kidney failure in 2005 after I had my first child. I was in the hospital on an average of 3 weeks out the month for the next almost 3 years. I went to 5 different doctors and had every test done imaginable atleast 5 times. My parents got me an appointment at the Mayo Clinic in Minnisota and with in 3 days Dr Lightner had figured out that I had Bi-Lateral Renal Reflux and had me set up for surgery. I am so greatful that she has given me my life back and I can spend more time with my kids instead of in the hospital. The Mayo Clinic is truely a God sent for me and thousands of others.
June 8, 2009 at 12:22 pm |
I cannot put into words what a WONDERFUL experience my husband, Noel, and I had at Mayo Clinic, Rochester. Noel was diagnosed with Bickerstaff Brainstem Encephalitis (BBE) and has been left a quadraplegic. This has been extreemly tramatic to our family including a daughter 19 and a son 16. NO ONE at Mayo Clinic has seen it before. We went there for a second opinion. Dr. K. Stolp has been his Physical Medicine and Rehab doctor. She and her team have been terrific- so compassionate, thourough, wholistic, knowledgeable. She spent over 2 hours our first time with her!! She is truly fantastic and I can’t say enough good things about the Mayo clinic experience. Even the sleep dr. Noel saw helped with Noel’s transfer to a bed so we could address his care needs! Everyone should get their medical care there!! The BEST medical care and team of professionals I have ever seen and experienced!
May 8, 2009 at 5:08 pm |
Totally blind, paralyzed, by no known source, Mayo clinic told me the waiting list is so long, I should look for another facility, to diagnose my condition. How lovely of you to turn me away, in my hour of need.