Need Patients' Experience with Mayo Clinic. Is it worth it?

Posted by David @nycdave7, Jan 19, 2019

Hello, I was wondering if there is a substantial difference in quality between a top 1 hospital compared to a top 10 or 20 hospital in the nation. So I am a 25 year old, 135 lbs, 5'10'' male who eat well, sleep well, and exercise. 2 Years ago, I had laser eye surgery where I was a very healthy individual have not gotten sick or the cold for 14 years. Part of the recovery regimen was using corticosteroids for 6 weeks and I developed systemic effects. Immediately, I had the swollen face & angioedema. One month later, I had a blood pressure of 160/100 with a heart beat of 100 at rest. Stopped since then (a bit over 2 years) and I still have the symptoms ( chest pain, headaches, light headedness , and concentration problems). I went through various doctors (about 25), including endocrinologists and neurosurgeons at Weill Cornell, Mt. Sinai, and NYU Langone in addition to private practices. I have some lab tests that showed slight to moderate elevated cortisol levels via. the 24 hour urine cortisol test and midnight salivary test. The doctors here seem to not care and are not really helping. i was wondering if it is worth the time and money to go out of network to the Mayo Clinic at Rochester, Minnesota or keep on trying in NYC. Losing hope and starting to get depressed.I have also had 1 slightly elevated reading of ACTH and morning Serum cortisol

Interested in more discussions like this? Go to the Visiting Mayo Clinic Support Group.

You can self refer, and I would encourage you call immediately. I am 71, and had ear surgery at Mayo, Rochester when I was 10. Several local specialists had multiple ideas of what to do. My parents took me to Mayo, I was thoroughly assessed, and surgery was done and all was well. I took my now ex-wife to Mayo 25 years ago, and had an exam myself. They pulled up my ancient records immediately. There is no better place to have your situation addressed in the collegial manner in which the physicians work.

REPLY

We were at the Rochecter, Minnesota. It was very thorough. My husband was electrocuted with on visible injuries but 4 months after he had a blood clot pass through his heart into his lungs. For a year almost he had health issues that the neurologist would tell him it was anxiety. Finally in Dec 2008 we went to Mayo. They set you up with appointments concerning your health issues, go over your previous test and procedures performed and results. We had approximately 8hrs of Monday to Friday appointments for 11 days. Although he was told that no medical electrocution would not cause this to happen, we found answers for other issues. He still has issues i believe is caused from the electrocution because it seems like temporal lobe epilepsy, blood pressure issues, and heart rate all seem to be the effect of the bodies electrical currants. He had issues to where after cardio exercise blood pressure and his heart rate gets power then normal. He to a break from his workout because he messed his knee up from over stretch. He would work our for two hours. Now starting back to exercise and diet his blood pressure is dropping again to the point of almost passing out but heart rate stays 54-74 with pressures low. Any back to our visit at Mayo i do feel it was definitely worth going.

REPLY

Yes, the Mayo Clinic approach is the gold standard. I paid extra and no regrets. Only a deep appreciation of their excellence.

REPLY

Sorry to hear about your ongoing medical issues. I went to Mayo 17 years ago for head and neck cancer. I live in a rural setting in North Dakota. The doctors and hospitals here in North Dakota's largest city wouldn't touch me after they diagnosed my cancer. They recommended Mayo or the University of Minnesota. I chose Mayo and I'm glad I did. The Mayo system is unlike any other medical facility I have encountered. Mayo takes a comprehensive approach to your health care. The staff is very thorough in their approach in caring for you're individual medical needs. I have made over 50 trips their over the last 17 years because of ongoing health problems. I understand your concerns about costs but I would recommend contacting the intake department. Maybe their is some monetary help they can offer you depending on your financial situation. Like others have said you may not get the answer you want but they will come up with answers for you. Their are numerous accommodations available for people who travel. People come from overseas to see the professionals at Mayo. I have heard Mayo Rochester is a larger campus with more healthcare options available. I won't go anywhere else if I have a serious health care situation. Good luck to you.

REPLY
@nycdave7

Hi Scott. Thanks for responding. I am aware of the other 2 satellite campuses Mayo has, but I heard the Rochester campus is supposed to be top notch and there is a quality difference as mentioned on the web.

If you don't mind, How much did it cost for your family to visit Mayo per trip (and duration of the trip)? Reason being is that my health insurance is out of network for Mayo, but it is a PPO. I called my carrier, but they did not provide a concise response so I would like to get an idea of how much Mayo would cost from the patients' experience. My main concern is that I might not get the help I need from Mayo but incur a 5 digit medical debt. The last thing I would want is for Mayo to say I don't know or dismiss my symptoms and have to be responsible for a large medical expense. Thanks!

Jump to this post

Hi Scott. My husband and I have all of our care at the Mayo Clinic in Rochester and they are top notch! We are fortunate that our insurance does cover visits to the Mayo. Even though our insurance pays the bills we do get a copy and from what we've seen they are comparable to other health care facilities. I think the business office will help you to get an idea of what an assessment visit would cost. We have never been disappointed at the Mayo, we are both healthy but have each had a surprise issue that the Mayo was able to resolve. I wish you luck.

REPLY

@nycdave7 What you might want to try first is a functional medicine specialist or environmental medicine doctor. They look at preventing problems instead of treating them with prescriptions. What I'm understanding from your description is that you had a reaction to steroids and have a lot a stress about what that may have done. The stress over this will affect your test results and health. I know living with uncertainty can be stressful, and sometimes health issues are out of our control no matter what we do, but you don't want that to lead to other health problems. You have to find a way to make peace with that situation and do what you can to seek better health. I do see an environmental medicine doctor who treats me for allergies with allergy shots, and he commented when another doctor gave me a steroid asthma inhaler and talked about the long term health effects and said things that the prescribing doctor didn't tell me. You'll probably get better information about this if you go outside of conventional medicine. That being said, and as young as you are, you have an advantage with your health. If you address the stress issues and get that under control, you'll give yourself better health for the rest of your life. Stress and anxiety contribute to the cause of about 80% of diseases. This may be all you need to recover, and seeing more doctors might be adding more to the stress if they don't find an answer. I am a Mayo surgical patient, and I was very impressed with my care and had a great recovery, but I do better as a patient outside of conventional medicine for my immune and allergy related issues. Mayo is a wonderful place and a great place when all else fails which you can keep in mind, but the costs do add up and they are very thorough in testing. It sounds like you have already done a lot of that already. You can look at the website for the Environmental Health Center in Dallas. That was the practice started by the pioneer in the field, and they have medical volumes for sale in detail written for doctors.

https://www.ehcd.com/
You can also find physicians under the https://www.aaemonline.org/ under the resources tab.

For stress, I do recommend 2 books by Dr. Sood, a Mayo doctor with a mind /body practice. I found these after my surgery, and I did a lot to overcome my anxiety, and the books explained why my methods worked to deprogram my stress and fear. The thing to know is that our brains hold on to stressful things as a survival skill, and push the other happy thoughts out of the way. Just knowing that, gives you a way to work around it.

The Mayo Clinic Guide to stress free living and the Handbook for Happiness.
https://marketplace.mayoclinic.com/shop/healthy-lifestyle/book/mayo-clinic-stress-management-combo_752700

https://www.mayoclinic.org/biographies/sood-amit-m-d/bio-20054879
REPLY

@becsbuddy In my last post to you I meant Tapping is another tool you can use as I use different ones for my problems 😂

REPLY

Hey Scott

I am an 83 year old survivor (so far) of pancreatic cancer thanks to Dr. John Stauffer, surgeon at Mayo in Jacksonville, Fl. Jax Mayo is a seven hour trip for my wife and me, but I probably would not be alive today if I had not made the trip there back in October of 2018.
I was diagnosed with pancreatic cancer by local (Mobile, Alabama) doctors after very fortunately waking up one morning with jaundiced (yellow) skin as a result of the cancer.
The local oncologist and oncology surgeon both told me my tumor was sitting on top of an artery and surgery was not possible. They advised surgery might be available at some point in the future if I was still alive long enough for chemo to possibly shrink the tumor enough for the local surgeon to operate. You might not be aware, but in the case of pancreatic cancer, if surgery is not possible, your life expectancy is about six months. Obviously, I was upset.
There are six medical doctors in my and my wife's families and I do not consider doctors infallible. I also am a lawyer by training and profession and I am very good at research.
After receiving basically a death sentence from my local doctors, I spent many hours researching pancreatic cancer treatment and found Mayo's website actually advertising their doctor's ability to perform what is called arterial resection, which is removing the artery with tumor attached and splicing the artery back to working condition. Neither my local doctor nor my local surgeon had told me there were surgeons in other states and hospitals capable of performing this surgery. The Mayo web site actually depicted the surgery procedure.
After MRI on much newer (and clearer) equipment at Jax Mayo and also Cat scan, Dr. Stauffer advised my wife and me that he could operate and do an arterial resection if needed. After scheduling the surgery, we returned to Mobile to complete two more chemo treatments while awaiting surgery. I informed the local oncologist of my scheduled surgery and at that time he told me he was aware that M.D. Anderson had at least one surgeon who did arterial resections. He had not told me help might be available elsewhere until after I told him of my Mayo appointment. I had previously researched M.D.Anderson and was not aware they did the surgery, but I was concerned about some reviews of theirs saying that patients were more or less just numbers at M.D.A.
The care of patients at Jax Mayo is outstanding. You are definitely their primary concern. The physical facilities are amazingly beautiful. They believe art is a part of the treatment process.
Jax Mayo and I assume the other locations as well, say financial status should not be a determining factor in receiving their care. I understand their literature to say they will work with patients to assure they receive proper medical care regardless of their financial circumstances. I have Medicare parts A and B.
Technically, Jax Mayo does not accept Medicare in the usual sense. However, I pay only a fraction of their billing. My coverage pays some and I am reimbursed by Medicare or my Part B insurer for most of what I pay. Jax Mayo handles all this for me. I am sure they will politely discuss financial matters with you if you contact that department.
I can honestly give Jax Mayo five star rating in all aspects of my treatment. I have had one booking for second opinion on surgery; a booking and 6 day stay in their hospital for Whipple surgery for pancreatic cancer; a three month follow up (found to be cancer free) and a six month follow up (still cancer free). I will go back in late March or early April, 2019, for nine month follow up. Their care is worth the seven hours drive each way and motel and food costs. We usually stay at Hampton, about five minutes from the clinic as they offer a special Mayo rate.
Sometimes you will find a particular clinic or hospital that happens to have an outstanding reputation in the area of your illness that might not be the hospital of your choice, but if so, their expertise might warrant checking it out even if they might not be outstanding in other areas. I believe Mayo is generally ranked number one in the world generally, but even Mayo has certain areas in which they are recognized as particularly outstanding. Their staff, including their doctors, are salaried and have no reason to try to convince you to come there if they do not feel they have the expertise to treat your condition.
Hope this helps.
Charles Erwin

REPLY
@lioness

@becsbuddy In my last post to you I meant Tapping is another tool you can use as I use different ones for my problems 😂

Jump to this post

@lioness I’m a little confused but that’s not new. I di tapping as a way to handle stress and anxiety. Very useful at bedtime. Have a good day!!

REPLY
@becsbuddy

@lioness I’m a little confused but that’s not new. I di tapping as a way to handle stress and anxiety. Very useful at bedtime. Have a good day!!

Jump to this post

@becsbuddy I get confused alot too but Tapping helped me with pain in my back ,how I fractured my back it has helped me with any past blockages I had

REPLY
Please sign in or register to post a reply.