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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.
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.
I was denied also at the Minnesota location. I then applied at the Florida location and 2 weeks later they called me with an appt time of March 5th,2013
Total time spent waiting for a response up until my appt was 5 weeks. Have you applied at all 3 locations?
I was told that they prioritize referrals from Mayo alumni. We found a former Mayo doctor in L.A. and got an appt the same day she called in the referral.
Find a former mayo doctor or alumni who can help refer you.
Thank you for your comment, Liz. Every specialty department has different appointment availability that may affect the waiting period before a patient can be seen. We do not require that patients have a referral from any physician prior to requesting a consultation. Certainly, our Mayo Clinic alumni are a valued group of physicians and we greatly appreciate their referrals to our practice. Thanks again!
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!
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.
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?
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.
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 !!!!!
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%.
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.
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.
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
I am 68 and Mayo Clinic has been my primary medical care providers since I was 28. They have always been thorough, conservative and focused on my total health. They have always approached my rare allergies and surgical risks with the utmost respect for my life and family. I am alive because of both there and my persistants. In the end we are responsible for the level of care we recieve. We need to be able to communicate in a manner that serves our best health care. Doctors are not super humans, they are only as good as there experience and the tools they have at their disposal, and especially the patients ability to communicat. If Mayo Clinic said they could not figure it out, then it has to be something they have never seen before, or it can be managed at a pain clinic. We would all like to have the easy fix and sometimes there is’nt one. You hope for a cure and there was’nt one. It seems that you are fortunate to have found and emergency department that decided to shut down your wife’s immune sytem with steroids and if that is working then it is obviously a problem with her own body turning on itself. There are only so many tests . It sounds like the emergency room took a shot in the dark and decided that the only thing that might work is steroids. These are drugs not without consequences over the long haul. Your wife may also be dependent on pain pills and wants them, thus knows if she gets to the emergency room, she’ll get them. Please don’t take this the wrong way. She could even be very sensitive to pain pills and have an adverse reaction as far as her nerve endings and sheaths. I am allergic to narcotic type drugs and it affects my nervous system.
I know that the squeaky wheel gets the grease and we do have to raise our hands and open our mouths now and then. I wish you both well as I know you are on the ride as well as she.
I am not a Dr. Sam L but did anyone ever think of fibromyalga?
I am very sorry to hear this, but my experience was very similar.
I had a spinal injury in my neck in 2000 and have had all kinds on neurological problems ever science. I had fusion surgery in 2012 and now have different debilitating symptoms that come and go. Some of them have become so bad that I can’t care for myself at times. Out of desperation for help we sold everything we had to raise the money to go to the Mayo. After 2 months of preparation and having everything faxed that they asked for notes on MRI’s of C spine etc. We arrived and they did not even know we were there. Even though on the outside the place was beautiful the testing rooms were outdated and dirty. During one test they had forgotten about me and left me prepped and in a bed for an hour and a half. All of the money and time was a waste they did not even examine either of the MRI of my c spine. They had no time and were not interested in diagnosis of anything not simple.
The Mayo in Rochester is just living on their reputation and only interested in the “low lying fruit”
We returned home not only without a diagnosis but without anyone even looking at the problem only at irrelevant stuff $$$$$$.
Don’t waste your time money or resources on the Mayo
Hi Marie,
We’re sorry you feel your experience at Mayo Clinic was unsatisfactory. We have an Office of Patient Affairs, and if you wish, you can call and talk to them about your concerns.
Minnesota: 507-284-4988
Florida: 904-953-2019
Arizona: 480-342-2651
My husband was diagnosed with Stage 4 cirrhosis of the liver and told he needs a liver transplant. We only have one hospital that does liver transplants in our state, and they have done only 1 liver transplant since 1991. I began my search for a hospital to take him to with Mayo Clinic of Jacksonville, FL. Everyone was so nice that I spoke with and very helpful. My husband has no health insurance as he was diagnosed just before beginning a new job. Of course, that now means that his cirrhosis is a pre-existing condition and no insurance he could get would cover it, outside of medicare. I was told by several staff members, and I read on Mayo Clinic’s web site, about their charity program. Yesterday, my husband was called and informed that he has gotten through the review process and that before he can see a doctor, he will need to provide a $15,000 deposit. I called back and asked the gentleman about the charity paperwork. We are now waiting for a doctor to approve my husband for charity. He was told that he has 1-2 years left without a transplant. I am setting on ready to donate him however much of my liver I need to donate him. I am a universal donor….but noone will take him. No one will give him a chance. If this doctor does not approve him, I don’t know what we will do. Every other hospital I have called has a $200,000 deposit requirement. If we can’t come up with $15,000 then 200 is out of the question. He is currently trying to get disability so that he will be able to get medicaid…but that process could take longer than he has left. I am scouring the internet for anything I can find to help. I can only hope that someone sees this and can help.
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.
Did Sam’s wife visit the pain clinic as her Mayo doctor recommended? A doctor’s recommendation won’t work if the patient chooses not to follow it. I suffer from chronic pain and did learn to “live with it” quite successfully after completing the program through the pain clinic.
Medicine doesn’t always have a magic cure. Sometimes we have to live with just getting good treatment.
I am sorry that your wife had a bad experience with the Mayo Clinic but as someone who’s life was changed for the better by the Mayo Clinic I am insulted to hear you say that they will only take the “low hanging fruit”. When I came to the Mayo Clinic in December of 2010 my case was not simple. I was taking 14 different medications and my case required consultations with endocrinology, neurology, opthamology, gastroenterology, psychiatry, orthopedics, and women’s health. Not everything that the doctors told me made me happy or was what I expected to hear. However, the amazing teamwork of those departments and the technology that they employed allowed them to swiftly reach a diagnosis and come up with a treatment plan that brought me back to health. Just a year and a half later I take only four medications, have a job at a fortune 100 company, and am half way through my masters degree. I am sorry that your wife does’t have a success story but please don’t insult those of us who do.
Do not give up. I had abdominal/hip/leg/back pain and no answers for 5 years. I am female and most doctors indicated (without words) that it was in my “head”. Even Mayo told me, “You will have less pain in your leg when you have less stress.” Sent me on my way with exercises and a Tens machine. One year later I went back, upset that I hadn’t been able to do the excercises and walking, pain every single day!!! Told them they HAD to find out what was wrong! This time they found it with a soft tissue scan! That was in 1989 and the problem was a Desmoid Tumor, which they removed. It had caused many different pains as it was attached several places.Mayo isn’t perfect, believe me, but I know I had the best surgeon for my rare problem.
Your experience sounds identical to the one I had. The doctors couldn’t seem to figure out what was causing so many of my symptoms, and refused to acknowledge a prior diagnosis from Johns Hopkins. After 17,000 worth of tests, and 12 days later-even though many of the tests had many abnormalities-they said it was probably just stress, and I should go through their pain program as well! I also asked for second opinions, as my main doctor left the day after my first consultation to run the Boston Marathon!! But I was denied, and never did even get many of my tests explained. I even spoke with patient advocates while there and they were even worse than doctors. Such a waste of time and money, but most of all, such a loss of hope.
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.
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
Sorry to hear that. Almost the exact same thing happened to me. Just know you are not alone.
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.
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.
So glad to hear about your experience at Mayo, hope you are still cancer free. I have been diagnosed with Thymoma type B2/B3 recently and had surgery to remove it 4 weeks ago. I have seen 2 different oncologists in Chicago area and they have different opinions about further treatment. I am looking into coming to Mayo clinic for opinion about further treatment. Who was your oncologist at Mayo clinic?
Thank you
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
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.
I have an appointment in July 2012 with Dr. Capobianco. I am coming from another state. I am very worried about the money. We have already lost everything once and I am scared of visiting the Mayo Clinic, not getting any answers and again losing what we have tried to regain. I have been suffering with headaches all of my life, but the past 5 years have been a nightmare. I have progressively got worse. I really need help and am to the point now where I think I am going to die. I have been to every reputable doctor in the metropolitan area that I live in to no avail. If they cannot help me, how do I know Dr. Capobionco can? I’m really scared and worried. Any words of encouragement or wisdom are welcome. Thanks.
Sherry,
I’m considering the Mayo Clinic too for a different health issue and saw your post. I’m terrified of the financial aspect as well.
I have had migraines since age 14. I haven’t had them as bad as they used to get (they used to be blinding – the kind with aura, and I would vomit and have to stay in bed with the blinds closed and a cold cloth over my head all day). In adulthood they are more of a chronically strong headache that I have learned to live with until I found a neurologist who helped me get them under control. He is in private practice. His name is Dr. David Larsen and he is in Naperville, IL. If you have a chance to see him before your appointment at the Mayo Clinic, it’s worth a shot. Headaches are his specialty. He had my headaches under control immediately. Best of luck to you. I hope they get everything figured out quickly so you can get back to living a healthy and happy life.
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.
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.
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.
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.
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!
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….
Thank you for your honesty. I am at Mayo now and an bitterly disappointment in the care I have received so far. I have an autoimmune disease, too, and will likely leave disappointed. There is strength in numbers, even if there isn’t always strength in science.
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.
Wow. I’m so sorry you had such a horrible experience, but I want to thank you for sharing your story with us. I’m feeling even more hopeless now but at least I know that going here will be a waste of time and money. I’ve already had this experience with the other doctors I’ve been seeing. I don’t need it at the so called “top notch” facilities. Maybe I should try another country’s healthcare system. It seems America’s is garbage. HEALTHCARE PROVIDERS, EMPLOYERS, AND INSURANCE COMPANIES: THIS ISN’T A GAME!!! PEOPLE ARE DYING!! IF YOU NEGLECT THEIR CARE OR PREVENT THEM FROM OBTAINING ADEQUATE CARE, YOU ARE RESPONSIBLE FOR THEIR DEATHS!!
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!!!
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…
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.
I know this is an old post but did you ever firgiure out what was wrong? im going through the same thing as you and need help!!!
Does anyone know if they currently treat Piriformis Disorder at Mayo?
Yes, we do have physicians that see this disorder. To inquire about an appointment, please call 507-284-2111.
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.
BACK IN 1999 I WENT TO MAYO FOR A GENERAL PHYSICAL AND DR. STEVEN YETTERBERG TOOK THE LEAD SINCE THE ONLY SIGNIFICANT PROBLEM I KNEW OF WAS AN ARTHRITIC CONDITION-GOUT. THAT’S BEEN UNDER CONTROLWITH DIET AND DAILY COLCHICINE.
DR. YETTERBERG ASKED IF I HAD EVER HAD A COLONOSCOPY AND I REPLIED IN THE NEGATIVE SINCE STOOL SAMPLES HAD NEVER DISCLOSED ANY PROBLEMS.NEVERTHELESS HE PRESCRIBED ONE AND IT DISCLOSED COLON CANCER, WHICH MAYO THEN ELIMINATED BY HEMICOLONECTOMY.
FOR OVER 10 YEARS I HAVE BEEN HAVING REGULAR COLONSCOPIES, THE LATEST OF WHICH WAS AFTER A THREE YEAR HIATUS AND NOW I CAN WAIT FIVE YEARS BEFORE THE NEXT.WHEN I MENTIONED MY MAYO EXPERIENCE TO THE DOCTOR IN NYC WHO CONDUCTED THE LAST C’SPCY HE OBSERVED THAT DR.YETTERBERG’S DECISION SAVED MY LIFE. THANK YOU DR.YETTERBERG.
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….
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!!
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
Lynne, your concerns have been forwarded to the Office of Patient Affairs.
At age 22, I began to experience some speech difficulties. By age 23, I had a full blown speech “slurring,” over the course of a couple of days, so much so that my PCP sent me to the ER to get a CT Scan to check for a stroke or brain tumor. All results were normal; however, my speech was not improving, so I was evaluated by a local neurologist, who, after dozens of tests that can back normal, told me I had Myasthenia Gravis, and prescribed Mestinon. Shortly after, I developed a series of outter ear infections, so I was evaluated by a local rheumatologist, who, after dozens of test came back normal, told me that I had Relapsing Polychondritis, and prescribed Prednizone and Methoxtrate. For the following months, I went to over a dozen specialists in my hometown, all of whom said that all of my results were completely normal. After almost a year of thinking that I had some terrible neurological and rheumatological diseases, my rheumatologist referred me to Mayo Clinic, Rochester. It was there that I saw Dr. H. Luthra, who then referred me to Dr. K. McEvoy, who found that I have NONE of those diseases, but, instead, an anxiety-induced speech disorder. THANK YOU MAYO CLINIC for giving me my life back. With speech therapy and anxiety-management, I am basically fine today. Today, I am 25 years old and will be graduating with a Masters in Education/Counseling in May.
Five years ago this month I was having between 3-17 seizures everyday. Since having the surgery at the Mayo Clinic in Rochester, I have yet to have another seizure. After the proceedure, I had to relearn how to read and write in English and had to completely relearn my Spanish (I had graduated with a BA in Spanish two years prior to the surgery), but now I am living in Managua, Nicaragua and teaching English classes. My short term memory still requires me to write down EVERYTHING and I did lose some peripheral vision. However, I’d say it was more than worth it to have the procedure when I did. THANK YOU SO MUCH, MAYO CLINIC!!!!
I would like to see seasoned health care providers/educators that know their stuff but also know how to listen to my needs and what is important to ME!!!!! Since Mayo is already WELL known as the institution that leads with their variety of SURGERY……….balance your reputation and come out of the prehistoric era…..offer education on alternative methods or complimentary methods to treatment and health care rather than automatic presciptions to pills and surgery. Create and bolster the reputation you claim……make the NEEDS of the patient come FIRST not the money…..LISTEN to the patient and offer education on “energy therapies” and ways I can take care of my health and promote healing. Try empowering the patient!!!!! Provide opportunities to learn and try Chi kung, relaxation techiniques, accupressure,accupuncture, manipulation therapies, time management, new ways to look at stress, provide comfort and care to the hopeless so even if you don’t have a cure MAYO can provide or start the patient HEALING-whether or not there is a cure!!! Randomized Control Trials and Evidenced Based Medicine is fine but I don’t want to be dead before you feel “comfortable” about explaining non surgical options…….let me believe you are the best in the world…offer me OPTIONS not just surgery and pills….begin a HEALING patient centered wave from the Mall of America that will bring others back to you again and again, NOT for new prescriptions and surgeries but for EDUCATION on how to increase my health and renew joy and purpose in living at any and every age! Offer expertise for an inner healing…..mind-body-spirit. Thank you for asking….I hope you listen to the pulse of 2011 and beyond.
My husband experienced 10 years of success with his transplanted heart. In Dec 2009, he had valve surgery on his replaced heart. The following day, he suffered a minor heart attack that resulted in his becoming a dialysis patient three days a week.
Since the surgery, he develop hiccups, presently hiccups that keep him awake at night. He has sought help but with little assistance.
The following treatment have not stopped the hiccups:
-sliced lemons held under his tonque provide temporary help
-the nonprescription drug, Biotin, help for a period
-Gabapentin caused a reaction and he can’t get a prescription even though small dosages appear to help.
Does anyone have similiar experiences and have found a treatment that works?
I see 2 doctors at the Mayo, Scottsdale for a life threatning rare blood disease. Staff is great here but the doctors leave a lot to be desired. They walk out on you if they have a meeting or are running late.. They do not touch, examine or take your blood pressure, even when you go in and say it’s very high. You never get to talk to your doctor unless you have an appointment if something serious happens to you at home. They do not care what you have to say or how you feel. I’ve seen more attentive veterinarians. I ask the allergist I see there to fill out some paperwork…he said I don’t have time and walked out. Let your oncologist here do it he muttered. Guess what…oncologist didn’t have time either, he had a meeting also. Save your money instead of going to a big business money maker who could care less about sick people. To this day I am in constant agonizing pain after spending thousands at this rip off facility
Dear Ms. Guerrieri,
I am very sorry to hear that you have had such a bad experience at Mayo Clinic in Arizona and we do thank you for bringing it to our attention.
It would be best for you to contact the Patient Adminstrative Liaison’s Office, Monday – Friday, 8:00 a.m. to 5:00 p.m. and they will be able to address all your concerns. Thank you again.
I have been a patient of Mayo Clinic for many years and have always been amazed at the quality of your doctors and nurses. This last week I was even more impressed with the actions of Linda Schwartz, RN.
While doing her regular inspection on my ICD, she noticed, a little something which just was not right. Instead of passing this up Linda kept at it, even though it was way over her knowledge base. She spend many hours researching and seeking help from others. The doctors and Linda did find the answer to a problem.
I’ve had this problem for many years and could not get any relief.
I am now in the process of correcting errors made to me by others. Thanks to her keen sense of duty I will get better.
So, Linda Schwartz, RN, you are my hero.
Edward Sheer
Edward,
My wife has an ICD and has almost from day one said that it doesn’t quite feel right constantly giving her discomfort. If this is the scenario that you experienced, I would be interested in hearing what Linda found and the corrective action.
Thanks
Jack
Survivor Septic Shock,complete organ failure,fungal infection, resulted from a doctor accidentally puncturing my intestines during surgery. My family says I was swollen like a balloon, I remember my hands and feet peeling so bad & my hair falling out from daily CTs.
My story:
I had surgery on Dec 17,2008 to remove my kidney for what we were told, was advanced stage kidney cancer. We now find my Dr records show only renal mass, presumed TCC of the kidney, and not a single biopsy done before or during surgery that confirms any cancer, and my family was told immediately after surgery I was Cancer free. Then just the other day after the 12th request for ALL medical records(don’t understand why this is such a struggle). We again, find even more disturbing information. I never saw any oncologist,that my PCP & Urologist clearly told us I was seeing, only (PCP,Urologist,Radiology)and now we are finding information that just turned up in my latest records request showing an Ultrasound I had on 11/11/2008 clearly indicates NO left or right renal mass, No bladder mass, No uterine Mass and a urine cytology shows negative for cancer cells another traumatic story, so I will stop and discuss the septic shock trauma from this surgery.
12/17/2008, during surgery for Left Laparoscopic nephroureterectomy,left aortic and interaortocaval lymph node dissection, right iliac and obturator lymph node dissection my intestine was accidently punctured.
12/17/2008 – 12/19/2008, I laid in a hospital in terrible pain for 2 days begging for help and was told by nurses & doctors I was being a baby and they just gave me more pain meds. I also find out no blood work had been done except Hct & Hgb and they were both Low and my urine output was very very low, maybe something that could have been a clue for the future, how about total blood work after a major surgery.
On 12/19/2008, the last thing I really remember for many, many months was looking into the eyes of my husband and telling him I was dying. He rushed to get help and General surgery stepped in and rushed me to emergency surgery, I was in Septic Shock. I spent 20 days on life support in ICU and survived only to be discharged quickly on 1/16/2009 with tubes and open wounds and the doctors & hospitals knowledge that I had another huge 9 cm abscess in the left flank that they couldn’t reach through the abdominal incision, Major respiratory issues, etc. Well of course my husband had to rush me back on 1/21/2009 and then more drains added until they finally they did a flank surgery on 1/23/2009. I also had over the course of my treatment many blood transfusions, mixups in my treatment orders and various other traumatic events. Well,I finally left the hospital early March 2009, and had home health & my husband nurse my wounds at home for months, until all drainage tubes,wound vacs an
d open wounds healed in late July 2009. Since I am a strong willed person & a fighter that has never let anything get me down,(but this trauma),I fought my way out of the bed, wheelchair, walker, and was told by my doctors to walk,walk,walk. Only to find out around Sept/Oct 2009, that the additional pain I was now noticing was my abdominal wall tearing in the lower pelvic area, because of the infection, then the next month they found 2 more inguinal and ?? in my upper abdomen. My doctor didn’t feel I was physically or mentally ready for another major surgery to repair them until after the 2009 holiday, but then the problems started as I was out of work for a year and lost my job and insurance. So there went my multiple hernia repair surgeries, and all care, since I could pay cash. I think that was the point I started wanting to know more about all that had happened to me, I was then told I had to ask questions through their risk manager and was never able to talk to any of m
y doctors and labeled “CRAZY”, I know this as the nurse thought she hung up the phone when she called to cancel an appointment and continued talking to the office personnel on my vm about how Georjean Parrish, this CRAZY person will be calling upset we cancelled her appt.
I new I wasn’t crazy for thinking they should be responsible for completely fixing all the medical issues they created, but since I couldn’t pay and had no insurance, I was sent numerous letter asking me to quit asking questions & that as of 4/30/2010 I needed to find new doctors, and I didn’t even understand all that had happened to me to be able to explain to a new doctor. My PCP basically acted ignorant to all that had happened to me and never referred me to any needed services, for R lower lung paralysis, asperating from being intubated twice,etc. Blood issues,etc.
The the last PCP I found to treat me after my medicare started, got frustrated with my questions and didn’t have enough time in her schedule to accommodate me, so here I sit home bound with no life, no car to find a doctor, no correct abdominal supports, since now the doctor I discussed surgery with is worried it has been so long that there will be issues with scare tissue and adhesion, so until something ruptures or my intestines get incarcerated/strangled, he say to leave well enough alone.
OK, I can kind of agree that God has gotten me this far he wouldn’t let me down now, but days when I am so sick, I get scared. I struggle to pay for the medicines I take, since medicare doesn’t cover and AZ doesn’t offer supp plans if under 65.
I live on daily Miralax and now a very limited diet, low carb,low fat, low cholestorol, no caffine, no dairy, only water, water and more water, 1 glass of tea per day since I can’t eat a lot of meat with my hernias and have been told last month my blood work is terrible & my 1 kidney is compromised. I feel like I am limited to bread and water and don’t dare try and ask for more specific info as to why for fear of loosing another doctor, because I ask too many questions.
Yes, I thank God everyday that I survived Septic Shock, so I can be here with my husband, children and grandchildren, I just wish I could get completely well and feel better and have my life back.
So much for life after Surviving Septic Shock, I really do try to stay Positive and Hopeful, but that doesn’t seem to be working very well, somedays. I just want to be healthy again and able to LIVE my life.
Thank You, for listening
Georjean Parrish
My name is DeLanie. I am 18 yrs. old. I would like to thank Dr. Alexander Shin, Dr. Robert Spinner, and Dr. Allen Bishop from the Brachial Plexus Clinic and all who were involved in the care that I am recieving for a brachial plexus injury I sustained due to a car accident in Feb of this year. I am so greatful to Dr. Guppta in Louisville, Ky for referring me to them. I am unable to use my left hand at this time but hopefully when I go back to Rochester in April for surgery they will be able to give me back some function of my hand again. I traveled a long way and was treated well, I appreciate the care I was given and pray that when I travel back in April that they will be able to help me to be able to use my hand again.
Unfortunately, I had a horrible experience at Mayo Clinic in Jacksonville. I had gone there seeking help with my migraines and coming up with a new preventative plan. I felt the doctor I saw was made me feel like I was a waste of his time. I had taken a day off of work and driven 5+ hours to go to this clinic and was basically pushed out the door like a piece of trash and no consideration for my time or effort in getting there. I would tell you that there is a reason that UAB in birmingham has a 9 month wait… there caring attitude and desire to help a patient in need was way more than Mayo ever could be, but you will have to put up with poor communication after your initial visit. I probably should have done just that.
Nicole, Thank you for sharing this with us. Please call the Office of Patient Affairs in Jacksonville and discuss your experience. Their number is: 904-953-2019
Gallbladder removal laparoscopally
I am having a burning and stabbing sensation in the abdomen along with sharp shooting pain in my right shoulder blade. I have unexplained brain lesions that need to be looked at every year through an MRI. Recently I went for the routine MRI while the MRI machine was doing its thing my stomach was burning worse than ever, I felt like being fried from the inside out. Xrays were taken of the abdomen and it seems like staples were left in there. Are staples a normal thing to leave inside the abdomen after gallbladder removal laparoscopolly? WOuld this cause me harm in the future? Is this a normal reaction. THe gallbladder surgery was performed 10 years ago. I can not get an answer anywhere. Please help with any information.
Matilda, we are sorry to hear about the problems you are having; unfortunately, we cannot diagnose conditions, provide second opinions or make specific treatment recommendations through this correspondence. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The numbers can be found at mayoclinic.org.
http://www.sepsisalliance.org/faces/georjean_parrish/
The Faces of Sepsis
Georjean Parrish – survivor
I am a survivor of Septic Shock, complete organ failure, and fungal infection – the result of a doctor who accidentally punctured my intestines during surgery. My family says I was swollen like a balloon. I remember my hands and feet peeling so badly and my hair falling out.
My story:
I had surgery on Dec 17, 2008, to remove my kidney for what we were told was advanced stage kidney cancer. We now find my doctor’s records show only renal mass, presumed TCC (transitional cell cancer) of the kidney, and not a single biopsy done before or during surgery that confirms any cancer. And, my family was told immediately after surgery I was cancer free. Then, just the other day after our twelfth request for ALL medical records (I don’t understand why this is such a struggle), we again, found even more disturbing information.
I never saw any oncologist that my PCP (primary care physician) and urologist clearly told us I was seeing. I was only seen by my PCP, urologist, and a radiologist. Now we are finding information that just turned up in my latest records: a request showing an ultrasound I had on November 11, 2008 that clearly indicates NO left or right renal mass, and a urine cytology (test) shows negative for cancer cells. This is, though, another traumatic story, so I will stop and discuss the septic shock trauma from this surgery.
December 17, 2008: During surgery for left laparoscopic nephroureterectomy, left aortic and interaortocaval lymph node dissection, right iliac and obturator lymph node dissection, my intestine was accidently punctured.
December 17 to 19, 2008: I laid in the hospital in terrible pain for two days, begging for help. I was told by nurses and doctors that I was being a baby and they just gave me more pain meds. I also found out that no blood work had been done except for hematocrit and hemoglobin – and they were both low. My urine output was very, very low, maybe something that could have been a clue for the future: How about total blood work after a major surgery?
On December 19, 2008, the last thing I really remember for many, many months was looking into the eyes of my husband and telling him I was dying. He rushed to get help and general surgery stepped in and rushed me to emergency surgery. I was in Septic Shock. I spent 20 days on life support in ICU and survived only to be discharged quickly on January 16, 2009, with tubes and open wounds – and the doctors’ and hospital’s knowledge that I had another huge 9 cm abscess in the left flank that they couldn’t reach through the abdominal incision. I also had major respiratory issues, among other things. Well of course, my husband had to rush me back on January 21, 2009. Then, more drains were inserted until they finally did a flank surgery on January 23. I also had, over the course of my treatment, many blood transfusions, mix-ups in my treatment orders, and various other traumatic events.
I finally left the hospital early March 2009 and had home health care. My husband nursed my wounds at home for months, until all drainage tubes, wound vacs (a method to help wounds heal) and open wounds healed in late July 2009. Since I am a strong willed person and a fighter that has never let anything get me down (but this trauma), I fought my way out of the bed, wheelchair, and walker. I was told by my doctors to walk, walk, walk. I then found out around Sept/Oct 2009 that the additional pain I was now noticing was my abdominal wall, tearing in the lower pelvic area, was because of the infection. The next month, they found two more inguinal hernias and we don’t know how many in my upper abdomen.
My doctor didn’t feel I was physically or mentally ready for another major surgery to repair them until after the 2009 holiday, but then the problems started as I was out of work for a year and lost my job and insurance. So there went my multiple hernia repair surgeries and all care. I think that was the point I started wanting to know more about all that had happened to me; I was then told I had to ask questions through their risk manager and was never able to talk to any of my doctors and I was labeled “CRAZY.” I know this as the nurse thought she hung up the phone when she called to cancel an appointment and continued talking to the office personnel on my voice mail about how Georjean Parrish, this CRAZY person, will be calling upset we cancelled her appointment.
I knew I wasn’t crazy for thinking they should be responsible for completely fixing all the medical issues they created, but since I couldn’t pay and had no insurance, I was sent numerous letter asking me to quit asking questions and that as of April 30, 2010, I needed to find new doctors. I didn’t even understand all that had happened to me to be able to explain to a new doctor. My PCP basically acted ignorant to all that had happened to me and never referred me to any needed services, for right lower lung paralysis, aspirating from being intubated twice, blood issues, etc.
The last PCP I found to treat me, after my medicare started, got frustrated with my questions and didn’t have enough time in her schedule to accommodate me, so here I sit home bound with no life, no car to find a doctor, and no correct abdominal supports. Since now the doctor I discussed surgery with is worried it has been so long that there will be issues with scar tissue and adhesions, until something ruptures or my intestines get incarcerated/strangled, he said to leave well enough alone.
OK, I can kind of agree that God has gotten me this far, he wouldn’t let me down now. But days when I am so sick, I get scared. I struggle to pay for the medicines I take, since medicare doesn’t cover and AZ doesn’t offer supplemental plans if you’re under 65.
I live on daily Miralax and now a very limited diet: low carb, low fat, low cholesterol, no caffiene, no dairy, only water, water and more water. I have one glass of tea per day. I can’t eat a lot of meat with my hernias and have been told last month my blood work is terrible and my one kidney is compromised. I feel like I am limited to bread and water and don’t dare try and ask for more specific info as to why for fear of losing another doctor because I ask too many questions.
Yes, I thank God everyday that I survived Septic Shock, so I can be here with my husband, children and grandchildren, I just wish I could get completely well and feel better and have my life back.
So much for life after Surviving Septic Shock, I really do try to stay Positive and Hopeful, but that doesn’t seem to be working very well some days. I just want to be healthy again and able to LIVE my life.
Thank you for listening
I wish I could say all wonderful things about Mayo, but my experience was far from wonderful. I was diagnosed with a large unterine fibroid in 2010. By the next year I had become so sick I could hardly get off the couch. I went to Jacksonville Mayo and Dr. Chen was professional, not overly nice, but her nurse was and helped me by explaining a painful procedure I was having done.
Dr. Chen recommended Focused UltraSound or Hysterectomy. I chose the least invasive ultrasound, but it was only done in Minnesota. My insurance BSBC agreed to pay for it since I had met my deductable, they just needed prior approval from Mayo. I informed Mayo of this via email and a 3-way call between Mayo, BCBS and myself. I was assured everything would be taken care of.
My husband and I made the 2 day trip from Florida to Minnesota November 2011. When we got there I asked again if all had been taken care of regarding the insurance. Patty reassured me it had. The procedure was uncomfortable and stressful the nurses were nice and I was on my way after 10 hours. I wish I had been sent home with pain medication, because it was severe at times. I was told I would be great in 48 hours. I wasn’t. The drive home was unbearable at times.
Now 6 months later I still have the fibroid and looking into getting a dreaded hysterectomy. I’m also getting billed in full by Mayo because they never got the prior athorization. This somehow slipped through the cracks. So not only did I waste a lot of money, time and pain on a procedure that didn’t work, but now I’m also responsible for the bill because Mayo didn’t do what they promised.
The staff is very nice, but not so nice that I would put up with this negative experience.
I’m sorry you feel your experience at Mayo Clinic was unsatisfactory. We have an Office of Patient Affairs, and if you wish, you can call and talk to them about your concerns.
Minnesota: 507-284-4988
Florida: 904-953-2019
Arizona: 480-342-2651
GLORY TO GOD. I THANK GOD FOR DIRECTING ME TO MAYO CLINIC IN JACKSONVILLE FL. FOR THE CUTTING EDGE SURGERY SUCCESSFULLY DONE BY THE SKILLED BLESSED HANDS OF DOCTOR HORACIO J. ASBUN AND HIS TEAM THE ANGELS OF GOD. DX. LARGE DUODENAL ADENOMA INVOLVING THE AMPULLA NOT AMENABLE TO ENDOSCOPIC RESECTION,PANCREAS DIVISUM. PROCEDURE–LAPAROSCOPIC PANCREAS PRESERVING SLEEVE DUODENECTOMY 2.CHOLEDOCHOJEJUNOSTOMY 3.PANCREATICOJEJUNOSTOMY 4.DUODENOJEJUNOSTOMY THERE WERE TWO THINGS I DID NOT WANT TO HAPPEN,CUT MY ABDOMEN LEAVING INCISION NON REMOVE PART OF MY HEALTHY PANCREAS. DR.ASBUN WAS ABLE TO AVOID DOING EITHER. NO ABD. INCISION AND DID NOT REMOVE ANY OF PANCREAS. DR. ASBUN’S SKILLS REMOVED ALL THE TUMOR AND I WENT HOME 7 DAYS LATER. I HAD NO NAUSEA OR VOMITING AND I FEEL GOOD 30 DAYS POST-OP. DR. ASBUN YOU ARE BLESSED AND YOU BLESSED ME AND MY FAMILY. THANK YOU
I have been seen at Mayo on three diferent occasions by several doctors. All the staff have been polite and professional. On my first visit I was seen by Dr. Wells and Dr. Thomas in pulmonology. I found them to be polite and careful and the only suggestion in that regard would have been an explanation for why some of the tests were ordered. (Partly my fault…I should have asked.) I was also seen by a Dr. Strand in the speech department who was VERY nice and kind and provided an excellent discusiion of my diagnosis and treatment and did not make me feel in any way demeaned for my problems with the explanation she gave.
I also seen Dr. Mokri in neurology. This was a terrible experience! I have had a couple of missed diagnoses in my life but I have never had such a terrible experience with someone acting like I was lying or not trying or neurotic with no real” problem. Because I was having some speech difficulty I had written my questions out so I would not be misunderstood but he only remarked that I should know doctors didn’t have time to read a book when he came in. I then attempted to ask a question and was interupted by his saying he wanted to know about my previous times there. I looked blank because this was my first trip until I realized he was referring to two times in the past in which my doctors had tried to refer me and I had been turned down as they were too busy to see me. This really had nothing to do with why I was there so I felt confused. He next spent his time arguing about a previous diagnosis that had been confirmed for years by multiple doctors and objective testing.(This was while I was still sittng there and before he had examined me in any way.) I offered my medical records to him which would have confirmed that but he shooed them away. His next questions had to do with how that and another accident had happened and when he found out one was related to work he really took an attitude (even though my work place had accepted it long ago and offered settlement and it probably had nothing to do with the problems for which I was seeing him.)Unfortunately, if you have ever had a work injury you are probably very familiar with the type of prejudice and lack of proper treatment that can cause. During the exam for which I had driven all day the day before (having had to go home and come back again) and for which I was most anxious to have a diagnosis (being extremely worried about what was going on) I made every effort to do exactly what he said exactly as he said it. Some things I did with ease and others were problematic for me as has been true for many years. My husband was present and later verified that the parts he could observe which involved different forms of walking were either done with difficulty or with ease but without variation. Ater the exam he ordered one test and remarked I WILL find out whether or not you have had (previous diagnosis)! I remembered thinking how bizzare the whole exam and questioning had been and puzzling over his tone of voice thinking he sounded threatening and not understanding it. That night in the hotel I read where he had implied in my records that I had not cooperated with his exam, that all my efforts were “variable” as well as comments that he basically found nothing wrong in spite of what would has been recorded as an abnormal exam by multiple doctors before him. He had his nurse call results of the one test they did and offered no explanation for my problems at all. I spent the entire night awake and crying not believing what he had written. I later wrote to him asking him to include other test results that I had given them that were pertinent and to reconsider the tone and wording of his charting as I felt it could prejudice doctors in my future care but he refused. A later contact with another neurologist there was more positive but still provided no answers and I believe that in spite of his kindness he was influenced by this doctor’s charting (and lack of it) before he came in the room and that because of that a diagnosis has been delayed for something quite serious. I also learned that they had not scanned test results into the record that I had assumed were there for him and the later neurologist to see. I remain depressed over how I was treated, over how much we spent trying to obtain a diagnosis and how I believe the negative charting influenced even the kinder doctor and of how that may impact my future care. I am very scared over what they may have missed because of this. I do not know if I will ever go into a new doctor’s office and feel trusting again. In spite of my earlier positive experience I feel this colors my entire perception of Mayo and I will most likely never return or recomend it to anyone else. I suspect the best thing would be to have the names of the specialist you want to see from another doctor but that is impossible for most of us who live so far away. Thank God for my docs back home who have so supported me through everything I have been through even though they do not have all the answers! If I should find their attitudes changed toward me because of what this this arrogant uncaring doc charted I don’t know what I will do.
We appreciate that you have taken the time to share your experience with us. It seems that your past experiences at Mayo Clinic had been positive. So, we are extremely sorry to hear that your neurology consultation did not meet your expectations and provide the answers that you were seeking. It would be best to contact the Patient Affairs Office and bring this situation to their attention (507) 284-4988. Thank you again!
The second neurologist has conferred with me over the phone and by writing since my visit. This is more time than most doctors would have given. I am still upset over the negative experience and how I believe it has effected my continuing care but I am considering returning for some testing anyway since I still do not have an answer.
The bad experience was my second trip but as it was within a few weeks time period I considered it all one.
In fairness to the other doctors who seen me it is possible that I might return to one of them in the future or that I might refer someone else specifically to them in the future if I can ever put enough time between me and the really awful experience.
I am truly disgusted by my experience with the Mayo Clinic dermatology department. Words alone can not express my utter dissappointment. My doctor looked at one page of my medical file (did not examine the medicines I had been on), was extremely rude, and did absolutely nothing. The doctor then suggested putting me on meds that I have already been on long term. This was a waste of my time and money. I know doctors are not supposed to be in the business of customer service; however, I did think they deserved to at least pretend to listen and look at patients concerns.
Amy, we’re sorry you feel your experience at Mayo Clinic was unsatisfactory. We have an Office of Patient Affairs, and if you wish, you can call and talk to them about your concerns.
Minnesota: 507-284-4988
Florida: 904-953-2019
Arizona: 480-342-2651
I am very out of breath and went to Mayo Rochester fall of 2011. Many tests were run, heart, blood, xrays, etc. I am obese. I brought other tests from local doctors. I was sent for thoracic surgery for enlarged lymph nodes in my chest area. The only diagnoses was inflammation.
There was no follow up by the doctor, no confirmation or results of the TB test. I was hung out to dry and I believe it was because I am obese.
Just last week my local dermatologist who is treating an autoimmune problem, heard about my inflammation problem. He is from the Mayo Clinic. He wanted to know what Mayo was doing about the breathing problem. He looked at their records and saw blood tests that weren’t run for sarcoidosis and told me to go to a pulmonary dr.
At Mayo Rochester last fall, after my surgery and tests, Dr. Graves suggested I cancel my pulmonary appointment as he thought they would not find anything further than being obese. My spirometry was good. I agreed and cancelled the appointment.
When I came home from the dermatologist last week, I cried because a doctor actually cared!!! Now I don’t know if I should return to pulmonary at Mayo Rochester or make a local appointment in Minneapolis. I know I will NOT see Dr. Graves again. I understand from an infectious disease doctor elsewhere when a patient is out of breath, the first thing they do is run blood tests for fungus.
Before surgery,I asked Dr. Graves if he had run fungus blood tests and his reply was that there wasn’t any need to. What if the surgery would have found a fungus? I had three months of neurophathy from the surgery–and it might have been unnecessary!!!!
My chest scan recently still shows enlarged lymph glands and my breathing is getting worse.
I have previously had major surgeries and cancer diagnoses at Mayo Rochester and a lumbar fusion at Mayo Scottsdale, all with great doctors and results. However, before back surgery, Mayo Rochester sent me to the pain clinic. They gave me exercises which made my back worse. I called and wanted to get an appointment to return sooner than three weeks. I was told, ” We are not an emergency clinic. Come back when you are supposed to.” I am so happy with the fusion at Scottsdale with Dr. Patel.
I am very disapointed with Dr’s at Mayo clinic in Rochester Minnesota.I was reffered up there by my primary dr because of recurrent infections,a cyst showing up on the back of my head and a cyst showing up in my sinus cavity.All i know is that by me explaining to Dr.Fleming in internal medicine how I feel by running alot of ct’s and mri’s they found actually something wrong.I was reffered to see a neurologist about the cyst and the pain that I have in my left arm.I even told the neurologist that once I tell him when this all started he would treat me different.He said that I dr so and so solemly swear and give u my word as a dr no matter what u say will not change the way I treat you.Finally I told him that the pain in my left arm all started after I had surgery on my left wrist and elbow about that time he jumped up out of the chair running to the door saying I was born with cyst on the back of my head.well me and my mom know for a fact that I wasnt. THen comes they way I was treated by Ann Thompson.I seen her to go over some of the test results.she basically said I am a medical enigma because blood work comes back a little bit abnormal but ct’s and mri’s shows alot of thickening in my bladder my stomach my esophogus and few other issues.she tried to say I was born with the cyst and when my mom said we know for a fact I wasnt all she did was get rude and say interesting.well any way we left mayo with more questions that answers. I was sopose to go back for more testing but I had to call and cancell the appointment because I got in a car accident and had to wait for my car to be fixed well I contacted Mayo about going back and the dr I was reffered to refuses to see me for what ever reason.The reason why I think he wont is because of the lies that was reported back to him by the neurologist saying because of the subjective material I told him he thinks I need to see a psycologist and by the lies that was told to him by Ann thompson like for example there is no lumps in my skin when I know my body better than anyone and the Lumops are getting bigger that dr in my hometown feel them.I guess the answer will come for what is wrong with me when I end up dead because I was refused to be seen my the dr I was reffered to there.I have steadily tried to get a appointment to come back but never recieve a reply I guess people is right if you have some strange rare problem going on you might as well forget about mayo because if it is not a simple answer you wont get help.
We’re sorry you feel your experience at Mayo Clinic was unsatisfactory. We have an Office of Patient Affairs, and if you wish, you can call and talk to them about your concerns.
Minnesota: 507-284-4988
If I were you I would go to Cleveland Clinic for answers. I think much depends on what doctor you get at either place but I had a terrible experience at Mayo and then went there and was dx…as well as being treated with more respect.
I had to cancel my appointment last month. After being admitted to our local hospital from the ER the pulmonologists and hospitalists at St. Johns in Maplewood treated me and advised against travel. I received excellent care and I’m continuing with their work up and follow through. I appreciated your follow through thank you letter.
In 96 mayo saved my life as I had a brain tumor. Just out of the blu in October 2012 my vision went bad in one eye and extreme pain from waist down my blood pressure went up and my pulse well over a hundred. None of the local doctors could figure it out. They sent me every ware with no results. So I went back to the local doctor and he suggested Mayo. After the doctor and my self fought for 2 weeks to get me in there, I was denied.
After telling my wife I was gonna just gonna lay on the couch and drink beer and die. My heart rate went down to at least a 100 bpm. Then I decided to look at my Email. Their was a Email from Mayo asking for a donation for some research project.WOW
My pulse went from a 100 bpm to 175 bpm. I was disgusted and angered you don’t wanna help me but you want my money. Funny! I’m useless , on STD and have no extra money and need to conserve funds so when I’m gone my wife can keep the house and feed our son.
So I emailed back to Mayo with my frustrations about there request and how they denied me. Not thinking I would get a response. I was shocked and impressed when I checked my Email later and there in the inbox was a response from Mayo.
There response sent me into a whole body numbness. With a pulse of 200 bpm. They sad sorry and that some people have more acute problems than you. and I could file for a review though. And how do they know how acute a person problem is with out even seeing them.
So I forwarded the Email to my wife at work. She was mad and her and her staff started to wright a letter to the paper and the media with all this info. I asked her to wait. Ill try one more time to get in to Mayo.
So I went to an old school doctor who spent an hour and a half with me he compared all my recorded back to 1996. He contacted me a day later with his finding. he sent me a letter with that info and what kinda doctor I needed to see.
So I tried one more time to get an appointment at Mayo through there online appointment request. With in one hour I received a
call asking for more info, I faxed it to them right away and about 2 hours later they called me with an appointment.
I have been down there most of this week and will be back next week. I’m up in neurology/surgery. I have two doctors working on it. One Doctor is beyond excellent and One is average. Both have gave me there time. I feel I know what the problem is and it is visible to the doctor on multiple scans. The two doctors don’t think that’s the problem at this time. But not ruling it out. They have sent me off to other departments that are not there specialty to rule out other possible cause. The best part is the two doctors in neurology are the ones following me through in other areas not related to them. Now that’s how I remember Mayo back in the 90s.
Don’t give up hope. They have some saying about hope. hold them to it. If after all this and they tell me they don’t know. Ill be the guy sleeping in a sleeping bag there. They have every medical resource available there and they can figure it out if you get a doctor that is willing and if you don’t, get a diffident doctor.
I remember one of the doctors asked me what my time frame was ,and how much I wanted to travel back and fourth. Um odd question I thought. But I’m here to stay to get on my feet or go home and die are my only options. pulse is staying right around 100 bpm now. cant imagine ticker can tack it to much longer like that. So I do have my sleeping bag handy just in case they say I don’t know.
My opinion would be to just show up there. If you have Insurance or some cash. There is nothing they cant check out.
http://www.sepsisalliance.org/faces/georjean_parrish/
The Faces of Sepsis
Georjean Parrish – survivor
I am a survivor of Septic Shock, complete organ failure, and fungal infection – the result of a doctor who accidentally punctured my intestines during surgery. My family says I was swollen like a balloon. I remember my hands and feet peeling so badly and my hair falling out.
My story:
I had surgery on Dec 17, 2008, to remove my kidney for what we were told was advanced stage kidney cancer. We now find my doctor’s records show only renal mass, presumed TCC (transitional cell cancer) of the kidney, and not a single biopsy done before or during surgery that confirms any cancer. And, my family was told immediately after surgery I was cancer free. Then, just the other day after our twelfth request for ALL medical records (I don’t understand why this is such a struggle), we again, found even more disturbing information.
I never saw any oncologist that my PCP (primary care physician) and urologist clearly told us I was seeing. I was only seen by my PCP, urologist, and a radiologist. Now we are finding information that just turned up in my latest records: a request showing an ultrasound I had on November 11, 2008 that clearly indicates NO left or right renal mass, and a urine cytology (test) shows negative for cancer cells. This is, though, another traumatic story, so I will stop and discuss the septic shock trauma from this surgery.
December 17, 2008: During surgery for left laparoscopic nephroureterectomy, left aortic and interaortocaval lymph node dissection, right iliac and obturator lymph node dissection, my intestine was accidently punctured.
December 17 to 19, 2008: I laid in the hospital in terrible pain for two days, begging for help. I was told by nurses and doctors that I was being a baby and they just gave me more pain meds. I also found out that no blood work had been done except for hematocrit and hemoglobin – and they were both low. My urine output was very, very low, maybe something that could have been a clue for the future: How about total blood work after a major surgery?
On December 19, 2008, the last thing I really remember for many, many months was looking into the eyes of my husband and telling him I was dying. He rushed to get help and general surgery stepped in and rushed me to emergency surgery. I was in Septic Shock. I spent 20 days on life support in ICU and survived only to be discharged quickly on January 16, 2009, with tubes and open wounds – and the doctors’ and hospital’s knowledge that I had another huge 9 cm abscess in the left flank that they couldn’t reach through the abdominal incision. I also had major respiratory issues, among other things. Well of course, my husband had to rush me back on January 21, 2009. Then, more drains were inserted until they finally did a flank surgery on January 23. I also had, over the course of my treatment, many blood transfusions, mix-ups in my treatment orders, and various other traumatic events.
I finally left the hospital early March 2009 and had home health care. My husband nursed my wounds at home for months, until all drainage tubes, wound vacs (a method to help wounds heal) and open wounds healed in late July 2009. Since I am a strong willed person and a fighter that has never let anything get me down (but this trauma), I fought my way out of the bed, wheelchair, and walker. I was told by my doctors to walk, walk, walk. I then found out around Sept/Oct 2009 that the additional pain I was now noticing was my abdominal wall, tearing in the lower pelvic area, was because of the infection. The next month, they found two more inguinal hernias and we don’t know how many in my upper abdomen.
My doctor didn’t feel I was physically or mentally ready for another major surgery to repair them until after the 2009 holiday, but then the problems started as I was out of work for a year and lost my job and insurance. So there went my multiple hernia repair surgeries and all care. I think that was the point I started wanting to know more about all that had happened to me; I was then told I had to ask questions through their risk manager and was never able to talk to any of my doctors and I was labeled “CRAZY.” I know this as the nurse thought she hung up the phone when she called to cancel an appointment and continued talking to the office personnel on my voice mail about how Georjean Parrish, this CRAZY person, will be calling upset we cancelled her appointment.
I knew I wasn’t crazy for thinking they should be responsible for completely fixing all the medical issues they created, but since I couldn’t pay and had no insurance, I was sent numerous letter asking me to quit asking questions and that as of April 30, 2010, I needed to find new doctors. I didn’t even understand all that had happened to me to be able to explain to a new doctor. My PCP basically acted ignorant to all that had happened to me and never referred me to any needed services, for right lower lung paralysis, aspirating from being intubated twice, blood issues, etc.
The last PCP I found to treat me, after my medicare started, got frustrated with my questions and didn’t have enough time in her schedule to accommodate me, so here I sit home bound with no life, no car to find a doctor, and no correct abdominal supports. Since now the doctor I discussed surgery with is worried it has been so long that there will be issues with scar tissue and adhesions, until something ruptures or my intestines get incarcerated/strangled, he said to leave well enough alone.
OK, I can kind of agree that God has gotten me this far, he wouldn’t let me down now. But days when I am so sick, I get scared. I struggle to pay for the medicines I take, since medicare doesn’t cover and AZ doesn’t offer supplemental plans if you’re under 65.
I live on daily Miralax and now a very limited diet, because of CKD/Stage 3: low carb, low fat, low cholesterol, no caffiene, no dairy, only water, water and more water. I have one glass of tea per day. I can’t eat a lot of meat with my hernias and have been told last month my blood work is terrible and my one kidney is compromised. I feel like I am limited to bread and water and don’t dare try and ask for more specific info as to why for fear of losing another doctor because I ask too many questions.
Yes, I thank God everyday that I survived Septic Shock, so I can be here with my husband, children and grandchildren, I just wish I could get completely well and feel better and have my life back.
So much for life after Surviving Septic Shock, I really do try to stay Positive and Hopeful, but that doesn’t seem to be working very well some days. I just want to be healthy again and able to LIVE my life.
Thank you for listening
Serious Complications Following Robotic Surgery
http://www.zimmreed.com/Da-Vinci-Robotic-Surgery/63870/
Robotic Surgery Claims on United States Hospital Websites
http://onlinelibrary.wiley.com/doi/10.1111/j.1945-1474.2011.00148.x/full
I had a terrible experience in the neurology department at Mayo Rotchester. Basically I was labeled as just being neurotic. I ( I wonder how often this happens to middle aged women by male doctors) I later found out they hadn’t looked at my records and had missed important results. They refused to go back and include them in their charting even though I sent copies and they were the reason I was there. I was able to go to another prestigious clinic and obtain a diagnosis.
I do not think I would ever return there because I feel any other doctors would be prejudiced by their charting. To those of you who have had a bad experience also I would say that doctors are human wherever they practice. They have prejudices, they can jump to conclusion, they can miss things and misdiagnose things. They might treat the next patient just fine and you got them on a bad day but at Mayo they will never ever admit that one of their own might be wrong or have missed something or that they themselves did. Don’t give up.
HI Beth, We’re sorry you feel your experience at Mayo Clinic was unsatisfactory. We have an Office of Patient Affairs, and if you wish, you can call and talk to them about your concerns.
Minnesota: 507-284-4988
Florida: 904-953-2019
Arizona: 480-342-2651
Since I was last seen there I have contacted patient affairs and they really can do absolutley nothing when your problem is with a doctor. I am well past middle age and have had multiple surgeries and hospitilizations in my life but I have never had such horrible treatment as I did in the neurology department here. The worst part was that not only did we have to go elsewhere for a diagnosis but they recorded my neurological exam innacurately including recording testing that was not done which means the next doctor seeing me coulc think there has been a change when there has not. They used language in my permanent record that is prejucical and could cause me to be treated badly in the future and when I wrote them asking that they make an amendment on my chart to at least note all the abnormal tests they refused. Apparently it also just made them mad. I have been so distraught over this that I finc myself crying all the time and I can’t hardly eat. I am 5’6 and I’m down to 99lbs. I cannot tell any of my doctors what is wrong because everyone thinks Mayo is perfect and I do not want them prejudiced about what was written about me. I do not know if there is any use in contacting the department chair or not. I feel like they all just cover one another’s back there rather than taking care of the patient and I suspect it will just antagonize the doctor further. Does anyone else have any experience with contacting a department chair over an issue like this?
I like Mayo clinic. They have very good facilities and doctors. My family is well taken care of by the Mayo doctors.
However my child had trouble with the VOLUNTEERING DEPARTMENT AT MAYO. Their instructions for young volunteers are not clear and the staff at the coordinating department is not a friendly lot. They do not provide clear deadlines for applications and for busy young people you should not provide multiple deadlines – one in the application form and one in the website. Even though all the forms were sent in by my teenager on time, they rejected him well before the application deadline based on some technicality.
Thank you for sharing your comments with us regarding the Arizona Volunteer Program. We are sorry to hear that your son had a negative experience with the application process and will certainly forward your comments to the Volunteer Coordinator. Thanks again.
I would like some information about my wife. She has been passing out off an on since August last year, she has been in and out of ER several times and been to hewr Dr s. and they cut her blood pressure meds and have her wearing support hose and a has been wearing a back brace hoping that would stop her from passing out. It has worked for a while and now she has started passing out again. I was hoping there was a Dr. there that could help her over this. It is wearing me down as a carfe taker. Please help. Thank you very much.. Joe
Thank you for your note. We are sorry to hear of the problems your wife is having. Unfortunately, we are unable to diagnose or make treatment recommendations through this correspondence. I am attaching a link from our website that may provide some helpful information for you, http://www.mayoclinic.com/health/orthostatic-hypotension/DS00997, and if you’d like to schedule an appointment at one of our Mayo Clinic locations the numbers are Arizona: 480-301-1735 Florida: 904-953-0853 Minnesota: 507-284-2511.
A year ago my herpetologist told me that due to testing I needed to go to the Mayo clinic. I could not get in because I did not have someone to be with me. I had no one. They could not recommend anyone that would stay with me up there. I have little to no money and would not be able to pay them much and thought maybe that was the reason. A year later and I continue to get worse. I have a dog and had no one to care for him and they also couldn’t help me in that area either. I am lost as what to do. I’m new in FL and don’t have friends but even if I did I was told they would have to stay with me for a minimum of two weeks. In our financial world I know of no one that could take that much time off work for 2 weeks. I am so scared and don’t know what to do. I contacted churches that said they couldn’t help me. Where do I go from here.
I contacted Mayo after having sever headaches, diziness and 3 ER visits within 1 week. I had been sitting at home for 3 weeks with no answers from doctors in town. So I thought this was the place to go. They said I should see Internal Medicine and they can setup a plan from there, when they gave me the name of the doc it was for a cardiologist. But they said they do it all the time, it’s part of their internal medicine and they will setup a plan for me once I get there.
Well I got to my first appt. And the cardiologist didn’t seem to care much about my main chief compalint of headaches, diziness, unable to go to work for 3 weeks. He said he was much more worried about my hypertension which I’ve had under control over 6 years and had actually gotten an opion at Mayo many years back. I told him I was here for my headaches, diziness and ER visits symtpoms. He said that was part of his job as a cardiologist. He set me up for all these appts for hypertension which I didn’t need at all. He sent me to a Neuro. I asked him the doctors back at home thought maybe my adrenal glands were affected. He said that’s not part of his job once again.
I went to my appts. I went to the Neuro who bascially spent less than 20 mins w/ me listening and had me walk, touch my nose. And said I have no clue what’s going on. Hope things get better. I asked him if there was anything we can look into and what about my adrenal glands is that a possibility? he said that was out of his expertise. He offered to order a bunch of tests, which he said would offer no answers (not sure why he would want me to go through them then). I said since you don’t think they are useful I will not.
That was it… Cardigologist says it’s not his job. Neurologist says it’s not his job. Clearly cardiologist dept does not act as a internal medicine doctor too. Oh and the best part I was left with over $2000 out of pocket bill to pay.
I thought Mayo would spend time looking into the issues, rather they gave up without even trying. Doctors don’t talk to each other. no one seemed bothered. you always hear these great PR stories about how they spent so much time and found the issue, they truly are PR stories. b/c that’s not what happens when you actually go there. Neither doctor has read through my reports before I got to the appt. They also did not know exactly why I was there.
I am confused on what’s really happening at Mayo. Are they really that good? It seems like if your symptoms don’t fit neatly into a disease then they are clueless. I thought Mayo was good at looking deep into issues and coming up with diagnosis. While I realize they can’t diagnose all problems.
I wasted a week there. I think Mayo Clinic doctors need to realize people come there from all over the country and are looking for answers. At least don’t be rude to your patients. And come prepared. We are paying ALOT OF MONEY to be there. It’s just another day at your job for you, but to us it’s our last resort…
I am sorry you feel your experience at Mayo Clinic didn’t go well. I encourage you to call the office of patient affairs and see if they can help you:
Mayo Clinic Rochester
Attn: Office of Patient Affairs
200 First Street, S.W.
Rochester, Minnesota 55905
Telephone: 507-284-4988
Mayo Clinic Jacksonville
Attn: Privacy Officer
4500 San Pablo Road
Jacksonville, Florida 32224
Telephone: 904-953-2030
Mayo Clinic Arizona
Attn: Patient Administrative Liaison Office
13400 East Shea Boulevard
Scottsdale, Arizona 85259
Telephone: 480-301-4938
I want to follow up and call out the nurses, and desk staff. I think these people were very friendly and some of the nicest people. I wish doctors were even 50% nice like them.
Thank you for your post. If you have the time please feel free to submit again and we will review.