Share Your Mayo Clinic Story


We want to hear from you!  Add your own Mayo Clinic story, or comment on the previous story by clicking on the Comment link at the bottom of this post.  

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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.

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33 Responses to “Share Your Mayo Clinic Story”

  1. Lynne Says:

    I was recently hospitalized for lung cancer surgery @Mayo in Jacksonville,Fl. After having a thorocotomy, tow wedge resections, I was moved to my room which was on the ICU floor. within the first 2 hours after waking I realized that the nurses there has no experience taking care of a lung cancer patient after surgery. They kept apologizing for not knowing what to do for me because they only care for terminal patients who are not ambulatory and will not be getting well. thay had no knowledge of how to work my pain delivering machine and every shift had to ask for help.they had noidea that they were supposed to be rolling me to prevent blood clots . they did not know how to even work the JP drain to make it work properly. they did not even come when my alarms went off because they were busy with other patients (they only had 4 patients per nurse team of 2). No one told me that I would be coughing up blood clots. No one helped with coughing or breathing exercises as I was told would happen. Just getting a bed pan could be a good hour wait since no other nurses would help me except the two assigned to me. No water was offered or bathing. when ringing for a nurse to help me, the desk would cut me off before I had a chance to tell them what I needed. One nurse told me in the 4 years she had worked there, she had never walked a patient before. Every morning when the dr came in for rounds, he would be upset that the nurses were not doing what was required for my post-surgery care. I was put on the wrong floor he said. Since my bed was the only bed available in the hospital, that was the reason for poor care. Every shift change would apologize because they had no experience with caring for someone like me. I was not even walked until 48 hours after my surgery due to lack of knowledge. My story goes on with more mistakes and unknowledgable nursing care. I think it’s incredible that a hopital like Mayo provides such sub-par care for their patients due to lack of beds available. I believe this hindered my recovery

  2. Jeff Says:

    RE: Proton Therapy

    I am a cancer survivor who had proton beam radiation therapy two years ago. I more or less stumbled across this life saving treatment option doing research on the Internet. From my perspective, the addition of the Mayo Clinic Proton Beam Therapy Program is great news and will help other cancer patients gain access to this option.

    Well done Mayo Clinic!!

  3. Gerry Says:

    I’m a “healthy” 56 year old, marathon runner, living in Michigan when in September 2010 while shaving I noticed a small bump on my neck, under my jaw line. Having absolutely no symptoms of anything being wrong and having never been sick or had spent a single day in a hospital I called my primary doctor for a consult. He thought it was probably a swollen gland, prescribed antibiotic and said to give it a couple weeks. After two days I asked to have it tested to be sure it was nothing. On October 7, 2010 I was told it was tonsil cancer that had spread to a minimum of one lymph node in my throat. It was bad and it needed to be removed with possible radiation and chemo to follow. I chose to contact Mayo immediately…they scheduled me to see Dr. Eric Moore the following Tuesday (12th)…after his examination he confirmed the diagnosis and recommended surgery for the tonsil AND a neck dissection. I trusted his recommendation and the surgery was completed the following Monday the 18th of October. They were right – it was the worst sore throat I could imagine but they said because I acted quickly AND was in good overall health, the cancer was contained and no radiation or chemo was prescribed.

    The entire experience was one I wouldn’t want to repeat, however the doctors, nurses, and entire staff at MAYO were first class all the way, with the patient being given the highest priority, I would recommend Dr. Eric Moore and his team highly. They kept me constantly informed, they took time to answer any and all questions, and THEY GOT ME HOME! HEALTHY!

    I feel absolutely blessed to have been given the care I received. I’m going back for my regular visits and feel great. I’ll be running the Jacksonville FL marathon on Feb. 13, 2011 just over three months since my surgery then running the Boston Marathon in April. Its good to know that when life throws such a curve, if you’ve prepared yourself and with good care, you can beat anything! Thank you Dr. Moore and thank you MAYO for being there….

  4. daniel lundy Says:


  5. Amy Says:

    The other thing that I forgot to mention is my height and weight I am 5’2″ and weigh 106 lbs. a totally normal body to mass index ratio. So weight has nothing to do with it.

  6. Amy Says:

    I went to Mayo Clinic after 8 years of sciatica type pain that no one has been able to pinpoint the cause of or give me any relief, I live in a rural area. I cannot sit on a chair. At work the only thing I can sit on is a ball. At home I lay on the floor. Riding in a car is horrible and yet I spent 16 hours in one, one way, to get to the Mayo Clinic. Mayo is supposed to be one of the top diagnostic hospitals in the U.S. What a joke! I was sent to James M. Beckley, M.D.. He barely examined me and at one point was looking at my left leg when the pain is on my right side. I know I am a tough case that is why I went to Mayo they are supposed to care and succeed where others have failed. I was told that perhaps I need to exercise more and that I just need to go home and live with the pain, I was not a surgical candidate. I had the MRI of my back and brain sent to them and they did take an x-ray of my hip. But nothing is wrong with my bones, I think is a nerve, muscle issue. I asked about Piriformis Syndrome and he said he did not even believe in that. They have info. on Piriformis Syndrome on the Mayo web site and one of their doctors is telling me it is not legitimate condition? I pushed for a neurological consult and he said he would see if they had an opening. I was sent to J E. Ahlskog, M.D., Ph.D.. This doctor was very nice, and very old. He spent more time examining me and asking me questions but he specializes in Parkinson’s disease. He reviewed my MRI with me and seemed to at least care. When I said most of my pain was in my pelvis and right leg he said he could not read a pelvic MRI so he could not tell me about that. I though neurologists understood the nervous system? If I had a pinched nerve would a neurologist not be the one to know how to find it? He did suggest a different drug for me, which I will try but no one really wanted to find out what was wrong and fix me. If they had really thoroughly examined me and really looked at me and could not find anything I would have been ok with that. But no one really cared enough to keep trying or suggest another doctor. So much for the great brain trust that Mayo was supposed to be. One site on the web suggested an Electromyography (EMG) (FAIR-test) and a neural scan are the best ways to look for Piriformis Syndrome. Dr. Beckley said it was an expensive test and like I said before he did not believe in that disorder anyway. I wish I could transfer all my pain to him and then tell him to go home and live with it. Would I really drive across three states, take time off work for me and my husband, and spent my limited hard earned dollars if I was not desperate for help and answers???!!! I am also having problems with my right arm although I am not sure it is related. It is debilitating mentally, emotionally, and physically. Why become a doctor if you really don’t care about your patients? And really how can Mayo be the gold standard? My local doctor spent more time looking at me. Needless to say I left the clinic totally defeated and in tears. My husband hugged me and told me we would not give up. Save your money DO NOT go to Mayo Clinic.

  7. AJ Says:

    Do not come hear if you are in the middle of a major depression, unless you feel that powerpoints, videos, and 1 class on CBT daily will be helpful. The nurses are nice but my main Dr. was lacking. Uncomfortable as it is to be in a hospital for depression, you think your “team” would spend more then 3 to 15 minutes with you daily. I was feeling suicidal or I wouldn’t have went. Left feeling worse, but said what I needed to say in order to get out. No individual therapy, unless you call very nice nurses talking to you when you are having a melt down.

    I had the worse panic attack I ever had in my life there. Looks like that ward gets the leftover furniture from every other area in the hospital. It is very drab and depressing. I was not even asked for my life history of depression until the 5th day I was there by a social worker. I spent hours taking test that revealed that I had trouble telling people what I really wanted. Hmmmm, I asked for a replacement Dr. and was told no. To tell her she hurt my feelings. I told them I did not want to pay someone to tell them they hurt my feelings. Then when I asked to leave, they made me sit down with the same Doctor. I am sure they are wonderful for many things, but this is not one of them. No real advanced therapy that I saw and they do not stabalize someone who is in the middle of a trauma. By the 8th day I had enough. I am still struggling but seeing my local Doctor and trying to hang in there for my children. He was shocked to see what the daily schedule was and said he would never send anyone to Mayo again.

    Not happy at all, and I am sure I will be less happy when the bill arrives considering I was worse when I left then when I came…

  8. Jessie W Says:

    I can honestlly say I am not at all pleased with Mayo Clinic in Scottsdale AZ , I am a 38 year old woman that has suffered severe joint pain and flu-like symptoms along with other horrible symptoms for the past 5 years. The first time I went there I saw a Rheumatolotist that looked at my joints and said he could not see anything and treated me like it was all in my head. The second time exactly a year later I went hoping they could find it and I received a diagnoses of fibromyalgia, and felt better mentally at least think everything was figured out. Just 3 months later I was on my death bed with severe flu symptoms and pain, I thought I was going to die. Went to my regular family physician who suspected an autoimmune disease and sent me to a rheumatologist and was ultimately diagnosed with Sero-Negative Rheumatoid Arthritis just 45 minutes after my x rays were taken. He was smart enough to actually x-ray my joints instead of just looking on the outside and saying oh I don’t see anything wrong. You would think after all of the training and it being (Mayo Clinic) they would dig a litttle deeper to try to find the problem. I know there are great doctors at Mayo, but a couple of the Rheumatologists I had were not at all worth driving all the way from Amarillo Texas to Scottsdale Arizona, but I did because I was desperate for answers. My bloodwork showed nothing, but it was all over my x rays. I have it in every joint in my body including my jaw, I have my hometown Rheumatolotist to thank for that, I should have went to him in the first place but was told by other doctors that I would be better off going to a place like Mayo. I stayed in Arizona a full week to see other doctors including a phsycologist so they could see if I had some kind of mental disorder. That is what made me so angry. Only we know our body and when someone that high ranking like one of the doctors at Mayo tells you it may be depression or some other B.S. don’t listen to them. In fact go to one of your home town doctors, I guarantee there are some great ones out there. I promise you that!!!

  9. Heather C Says:

    My experience at Mayo Clinic Rochester was less than satisfactory. I have been struggling with endocrine issues for 10 years and finally my local doctor told me that I needed to go to Mayo to have it figured out. I sent all the requested information to Mayo and was told I would get a call if they decided to “take my case”. I waited 2 months with no word from them and then finally got a letter in the mail telling me when I needed to be there- with no information on what doctor I was seeing. I called them and asked if that is how appointments are made at Mayo, they just give you a time and you have to be there, without a phone call. I was told that someone should have called me to make an appointment and that they were sorry for the mistake.
    I pushed that aside, very hopeful that I was going to get answers so I drove several hundred miles to Rochester. When I got there, I was taken into a room and a nurse began starting to prep me for some kind of test. When I asked her what she was doing she asked my name and found that I had been checked in as the wrong person- they were about to run a test on me that was supposed to be for someone else!! This had me worried but I pressed on in hope.
    When I finally got registered as myself and saw Dr. C, he very much treated me like a number. He never once looked me in the eye- he just asked a few questions, looked at test results, poked around at my neck and dismissed me.
    I stayed 2 more days going through tests (some uncomfortable), but I felt that progress was being made. I returned home and waited for the report. When I got it, it put me in tears. The main genetic test that I went there for was not ordered- the doctor told me later that he “forgot” to order it, and another main test got messed up in the lab. The report basically said that none of the tests that WERE done were valid due to medication I was on so they had no answers for me. This, I felt, was unacceptable. I left 5 messages for Dr. C over a two week period- none of which he returned. I finally filed a complaint with the patients advocate department and he called me that night- only to tell me that I should have been off my medication to get good results. When I asked him why I was not told that before I went all the way to Rochester he had no answer. So, trying to still find help, I asked him what I was to do next to find answers and his answer to me was “I did my part”.
    after this I knew I was going to get nowhere and reported back to the patient advocate that due to the fact that there were no valid tests performed, I should not be responsible for the cost of their neglect. He said he would take my case to the board that oversees that department.
    I then received a letter from Mayo stating that Dr. C’s were deemed appropriate. When I called to ask what exactly was appropriate and what tests were done that they deemed were appropriate or were done correctly, they had no answer, but just told me I had no other course of action.
    To say that my experience was ridiculous in an understatement. I would never and will never recommend that anyone goes to Mayo Clinic Rochester. In fact, I will make sure that people know to not even consider it. If they want real help, they need to look elsewhere.

  10. Patient X Says:

    My review of Mayo has been mixed thus far. Like any other clinic, there are great doctors (even fabulous ones) and some not so great. I would suspect however, that an organization like Mayo would strive for perfection 100% of the time. By this I mean compassionate investigation and thorough care, not necessarily a treatment or cure, as this is not always possible.

    As someone from another country, I am paying for my care 100% from my own bank account. I came to Mayo because I have been suffering from illness since infancy and have not been able to find any answers or solutions back home. I have had a very negative experience overall in terms of healthcare provision. I expected Mayo to try their best to help me resolve my poor quality of life.

    This is what seemed to be the case on Day 1. My internist was superb, great care. The testing I had done I was also very pleased with. Very thorough, great staff, short wait times, very organized. I was happy.

    Day 2 comes along and I have my first of specialist appointments. The department of genetics was fabulous, I met a wonderful, caring, personable, and highly intelligent doctor who exemplifies what a doctor should be. My doctor was beyond superb. However, after meeting with a doctor in the thyroid clinic, I could not believe that I wasted so much time and money (and travel costs) to be told the same (lack of) answers that I have been told for two decades by local doctors who had no clue as to how to help me.

    Worse still, some of the differential diagnosis/explanations by the Mayo doctor as to my problem were contradictory. I was told the issue would resolve after treatment of another condition (which doesn’t necessarily fit my clinical history), alongside an alternate explanation that stated this problem affecting my thyroid absorption would never go away on its own (as it would be due to another condition that I have that is not treatable moreso than am I treating it now).

    In other words, as the doctor himself stated, he doesn’t know what exactly is going on or what to do and has never seen this before. Exactly why I came to Mayo. Why else would I be here? He strangely asked me what I thought it was (at least he was including me in my care, which I appreciate, but really I was hoping he would have the answers since he is supposed to be the best of the best), but when I gave possible considerations or alternate ways to treat the condition, I was essentially dismissed and told not to worry about it. All I care about is getting better. Period. This is what I’m willing to pay big bucks for. This is why I am here. Perhaps someone could explain how a person who is constantly too sick to function, as has been for 2 decades since childhood can “turn off” the feelings of frustration when they are being told they should shut up and continue to limp along towards the end like this. I was essentially told that since my test was fine right now, I am doing great and shouldn’t change anything. Despite the fact that this test result will change at any given time so this fraction in time means nothing. Hence why I am seeking answers.

    We discussed alternate dosing issues but I left being told they were either impossible (I would think the Mayo pharmacy could compound a drug if Big Pharma doesn’t sell a particular formulation), impractical (what’s impractical is sending me home to live like this), or investigations (don’t tell me about an experimental drug that *may* help if you’re not giving me a prescription). I left with no prescriptions or answers. Or help. Essentially it’s fine to Mayo if I continue on in this fashion, even though I begged them to help me when no one else can. Yes it’s rare for this particular condition to affect someone like this, but it IS affecting me, and “rare” shouldn’t be a puzzling presentation at the Mayo Clinic. If I’m the first case they have ever seen, I would think this would be interesting to them, and at least warrant further investigation outside the “common” realm of tests that I have had done for the past 2 decades.

    I left the clinic in tears (and I NEVER cry) because I essentially felt like I had a cancer diagnosis (life changing), except that there is no chance for treatment, remission, or a cure. I won’t be able to ever complete my education (I am still fairly young), have a family, be employed (I am too sick to work), or have any quality of life. I am being told that even if my problem will resolve (which I am skeptical about), I have to go back home to live like this for another 7 weeks until further testing can be done. And the doctor suspects this test will answer nothing. Perhaps I am being too picky, but I expect to get what I paid for ($475 to be told I should “relax”), and those answers were not there. I am considering not wasting my time with any other specialist consults in regards to my endocrine issues and will cancel my further appointments. If Mayo is ranked #1 in this area, it must not be in autoimmune endocrine issues. Perhaps they primarily deal with Type 2 diabetes (the common form related to obesity and poor diet, etc.). There were a lot of overweight people in the waiting room, so maybe this explains things. In that case maybe you’ll get help. If you have an autoimmune endocrine issue, I wouldn’t bother.

    If you have a rare cancer, brain tumour, or require treatment for a rare neurological disorder, Mayo probably IS your best bet and will save your life when no one else can. GO.

    If you have an autoimmune disease (the most underfunded, misunderstood, and understudied group of diseases), or some rare uncommon presentation of related issues, Mayo, like the rest of the medical field, likely cannot help you. In fact, if your case is not straightforward, simple, and “classic” (including classic presentations of rare diseases), I’m wondering if they can help you at all. And the specialists most likely will not go out of their way to find out what’s going on. It’s not only about billing and money (but I’m sure that’s part of it), because some of the treatments I would want are not cheap. They would still make money off me. It’s that they don’t or can’t take the time to do it. Which is ironic as I thought Mayo was known to think outside the box and off the beaten path.

    Although the doctor was kind and friendly, I still have more questions than answers. I want answers and solutions. Or admit you have no clue what to do for me. At least admit that. I want my $475 back, as that was a wasted visit. I have been scheduled to see another doctor but honestly I am beat down and don’t want to go, even though I am optimistically and desperately seeking help. I still hold Mayo in high regard as they are leaders in the field and are highly efficient in diagnostic testing. I am very happy with their diagnotic testing. However, don’t be surprised if you don’t get the treatment your were seeking.

    My personal is, if you have $20,000-$30,000+ to spare, and don’t really care what the outcome is, go to Mayo with no expectations. I don’t regret coming to Mayo, but it is not at all the outcome I expected. If you are really looking for a bang for your buck, and expect Mayo to wine and dine you while they solve problems your MD back home cannot, don’t bother. Apparently I am still going to suffer, and I’d rather suffer with that extra money in my bank account….

  11. MaryAnn M Says:

    Don’t wait another second – for those who have doubts about Mayo Clinic. My husband was under the care of Dr. Jack Leventhal, Pulmonoligist – first class doctor. We did not have to wait for an appointment to the Jacksonville, Florida, Mayo Clinic. We were shown respect and concern by everyone from the volunteers to the Doctors. No waiting – if your appointment is at 10:00 that’s what time you see the doctor. They were thorough, careful, informative and organized. Up to the minute research and knowledge provided us with a diagnosis and line of treatment. Everyone else told us to give up ! So hurry – make your appointment!

  12. Brent K Says:

    For 6 months I had chest pains and irregular heart beat. I was in the ER 3 times. Finally, I was told to go to Mayo to see a cardiologist.

    I was assigned to Dr. Johnston. The first time I saw him, he asked me why I was even there and made me feel like I was wasting his time. He told me I was fine and just to ignore my symptoms. When I asked him questions, he had to Google the answer on the computer right in front of me.

    To get answers, I had to beg him to let me wear a Holter monitor. Thankfully, that diagnosed that I was having runs of PVT and SVt in my heart. I researched methods to prevent that on MY own and now I am doing better.

    • Cindy Says:

      I had a bad experience with Dr. Johnston in 2007. He was rude, did not listen, did not address any of my questions and seemed to have no idea what to do. It was a total waste of my time and money to have an appointment with him.

  13. Wayne Says:

    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.

  14. wayne r smith Says:

    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.

  15. Sue N. Williams Says:

    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.

  16. William Kendra Says:

    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

  17. Nancy Collier Says:

    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.

  18. George Taylor Says:

    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.

  19. Jennifer Says:

    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.

    • Sam Leonard Says:

      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

  20. Sam L Says:

    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.

    • Lee Aase Says:

      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.

      • Sam L Says:

        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

    • Rebecca Thill Says:

      I had a similar experience when I chose to go to the Mayo Clinic in Rochester in June of 2008. I drove over 600 miles to seek treatment at the facility there because of the reputation of the best physicians being on staff there.

      I had been suffering severe sinus infections for over a year with two surgeries and no relief. I was examined by Dr. McDonald who at that time was the Chief Internist in the ENT department. After a very brief look at my sinus, no test were done, he agreed with the last doctor that I had seen. In fact, his report was almost identical to the infectious disease doctor that I had seen before going to Mayo. The both stated that I should try to stay off of antibiotics for as long as I could and just deal with the pain and discomfort. The whole exam and consult took less than ten minutes and I was sent home.

      Two days later I went to KU Med in Kansas City. A CT Scan was done. The infection had spread from the frontal, maxillary and ethmoid sinuses to the sphenoid sinus. I was told by the head physician there that if surgery wasn’t done that the infection could spread to my brain and even become fatal. I had the surgery and it has taken two years of intensive treatment to finally resolve the problem which Dr. McDonald negated.

      I contacted the patient advocate at Mayo about this and was told that Dr McDonald was no longer there as he had completed his internship and was now a practicing physician. He could not tell me where Dr. McDonald had gone to so that I could speak with him and he also told me that if I contacted Dr. McDonald that he would have no access to my records at Mayo and would not probably remember seeing me as a patient. I was told that I could send in a report about all of this, but to be brief and consise. I decided to wait until I had finished my treatment at KU Med, but now it doesn’t seem like it will get me anywhere to file the complaint.

      I am just letting people know that The Mayo Clinic does not always stand up to their reputation and you do not always get the best care there. In fact, if I had followed the recommendation of Dr. McDonald and not obtained medical treatement elsewhere, I fear for what might have happened to me.

      It also scares me to think that this physician is practicing somewhere and might again tell someone else the same thing he told me. Be your own advocate and don’t always trust what you are told by one doctor.

  21. Kathi Henton Says:

    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%.

  22. Valerie G. Archer Says:

    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 !!!!!

  23. fmdlife Says:

    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.

  24. Amber Says:

    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?

  25. Tammy Says:

    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.

  26. Sonya Says:

    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!

  27. Frank Louis Loverme Says:

    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.

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