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

Hello @nycdave7 Nice to e-meet you here on Mayo Connect! This is Scott and I'm sorry to read about your healthcare challenges.

I am not familiar with your condition, nor am I any kind of medical professional, but I would like to relate our thought process, etc. when my wife and I have decided in the past to use Mayo Clinic.

My wife had three instances of health concerns during her life where she and I were simply not comfortable with the care/concern/actions of her medical team. in each case we couldn't get an answer from her team in Chicago at their top facilities so we went to Mayo.

What we discovered is that Mayo sees the different, rare, or unique healthcare situations over and over, whereas her docs in Chicago maybe saw it once or twice in their careers.

We didn't always get the answer we wished for at Mayo, but in her case we always got one! Plus the care she recieved was absolutely top notch and we never, ever regretted it!

While she went to the Rochester, Minnesota campus, are you aware they also have campuses in Florida and Arizona?

Hi @nycdave7
I would love to share a bit about my experience and I like to say absolutely without a doubt Mayo Clinic is worth every second of your time. I was seen be many top notch physicians at multiple locations including the Cleveland Clinic where one of my nephrologist insisted I go. But I received no explanation as to why my blood pressures were running on average 300/220 even after 4 hospitalization and Dozens of tests. At that point I didn’t care what the answer was I was just looking for A answer. I woke up one morning went to my see my routine scheduled physical therapy appointment (Shoulder issues) and I felt terrible he took my blood pressure which was higher than his cuff would go. With tears in his eyes he said “one of these days your going to die on my table”. I packed my bags and drove to Rochester!! In hine sight that was not smart!! But I had been their in the past and new I could go on standby to see a doctor. I ended up in St Mary’s Hospital ER with a mild heart attack sustained during my 5 1/2 hr drive up there. I was told by multiple hospital staff that I was extremely lucky because I was seen by the very best of the best which happen to be available upon my arrival. I am very blessed!

I am not saying to do that in anyway and everyone’s experience is different. I have been to Mayo Clinic many many times but 4 separate time frames and 4 different major issues. I live in Illinois and it’s a well worth it 5 1/2 hour drive one way. So now my Mayo Nephrologist manages my care with some help from my local endocrinologist.

My diagnosis was primary hyper- aldosteronism and discovered I had a tumor in my right adrenal gland. Adrenal glads produce hormones that control blood pressure. Multiple hormones including cortisol, renin and aldosterone. Anxiety, stress, and sodium all effect cortisol levels. Mayo Clinic specifically has numerous case studies on this very topic. My doctor there particularly has several he has written. Here is a link to some of his...
https://www.ncbi.nlm.nih.gov/m/pubmed/
Here is a link to request an appointment http://mayocl.in/1mtmR63 . If you request and appointment then the Nephrology department will call you to do a phone interview and discuss your case if you both feel it is something you want to do and they will have a doctor review and schedule an appointment. It is worth the phone interview.
https://www.mayoclinic.org/departments-centers/nephrology-hypertension/minnesota/overview
Has you physician given you any diagnosis? Has the physician discussed the adrenal glands and their effects on blood pressure?

Curious
Dawn

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!

Hi Dawn. Thanks for responding. The physician has not given me any diagnosis since my symptoms are consider mild compared to a classical cushing syndrome patient. They wanted me to do the dexamethasone suppression test and DDAVP test to rule out hormone secreting tumors in the pituitary gland, but I declined since the reason why my health is like this is due to external medication involvemen t (steroid eye drops). The doctors have ruled out adrenal gland tumors due to blood tests and scans. My symptoms and lab reports show that it would be highly unlikely to have a tumor due to mildly elevated results

If you don't mind, How much did it cost for you 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!

Hello @nycdave7 David. It was awhile ago and I know every insurance company is unlike every other when it comes to coverage, noncovered issues, approvals, etc., etc., etc..

We were out of our network and our uncovered clinic expense for the trip was just over $40,000. That said, there were post-surgical complications, an ensuing coma, and weeks of inpatient care and therapies. As I said each case/patient/situation/insurance carrier is truly unique.

Later, when we had other coverage I recall talking with the intake/business office pre-visit and they were able to give me an estimate of what my out of pocket would be.

We never, ever regretted our decision.
I hope this has been of at least some help.

Stength, courage, and peace! Scott

Thank you so much for your help and sharing your personal experience, Scott.

@nycdave7
My insurance company covered 100% so I’m not sure pricing but I also know they will work with your insurance company especially since you have had numerous opinions with no results. I encourage you to speak with their insurance department.
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance
I forgot to mention in my previous response.. I had no idea anything was wrong until I received a steroid injection to my shoulder. The cortisol shot caused an unusual reaction that triggered my issues. My doctors were very adamant that it was impossible to have a tumor and had done multiple MRIs and couldn’t find it however my particular tumor was only visible on a CT scan that they accidentally stumbled upon for an unrelated issue. I had a mildly high aldosterone but a extremely low renin level. Not all tumors are hormonally active. But any tumor in the adrenal gland reeks havoc on the endoctrine system. I’m definitely not saying you have a tumor!!! But I highly encourage you to get those tests. Those will be the first few tests you will have if you decide to go to Mayos. They will also do 24 hour urine a slug of blood tests and an 24 hr ambulatory blood pressure monitoring. But if you decide to go to Mayo I encourage you to have them perform those tests because timing is everything with those tests. If not done properly they will be a waist of time and money.

You have to be your own advocate. No one else is more invested then yourself. I would not be here today if I did not advocate for myself. I am a very strong believer in everything happens for a reason so let’s find the reason. 😉

As for my stay, my sister-in-law lives 2 blocks from campus so I stayed with her. She sold her house a couple months ago so I stayed in a hotel and they had a discounted rate for patients and I used the shuttle which runs throughout the day free of charge. My stays are usually 3-5 days depending on testing schd. If you let your medical team know your in a hotel they try their best to get stuff done quickly. Good news “I DON’T KNOW” is not in their vocabulary. I have been seen my Nephrology, neurology, Epilepsy, Cardiology, orthopedic surgeons, physical therapy, cardio thoracic surgery and pain treatment center in the course of 20 years. I have only been disappointed once but only because it wasn’t what I wanted to hear.

Have you notice any other changes? Like sleep patterns? More jumpy than usual? Since Cortisol effects your fight or flight system different times of the day or night. Has your doctor mentioned an adrenal vein sampling also known as AVS?

Dawn

Hi @nycdave7 - I'm sorry for your experience which must be totally frustrating and scary. And I totally understand your insurance concerns. I can't add much to what has been said by @IndianaScott, @dawn_giacabazi and others. The one thing I would ask is whether you have seen PBS' Ken Burn's documentary on Mayo Clinic? If not, I would encourage you to view that before you make a decision. For me, and many others, the basic core values of Mayo are so different than those of other health care organizations that it would sway my decision if I weren't already a Mayo patient and totally pleased with every aspect of my health care. Here's a link:
https://www.pbs.org/show/the-mayo-clinic/

Some of you cost / insurance questions might be answered at Mayo billing / insurance web site, you should read before making plans.
It would be real hard to give you an estimate of cost. It will depend on how many doctor appts and number and type of tests they order.
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/before-arrival
Hope this helps.

Laurie

It can be very expensive..i was in Jacksonville last year & the blood tests alone which they always do were $3000.00 an Mri pelvic & abdominal was almost $8000.00.,I am self pay so I try to get estimates ahead of time from their Intl dept..used to be easy at Rochester but now it seems to become more & more difficult,,,also they cannot tell you how much for a surgery because it depends what they find it is wonderful if money is no object otherwise...