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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

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omioften10 | @omioften10 | Aug 29, 2024
In reply to @goldwingmine "I was diagnosed with CKD about 6 years ago, for the first two years I saw..." + (show)
@goldwingmine

I was diagnosed with CKD about 6 years ago, for the first two years I saw a nephrologist that was assigned to me at the hospital. I am fortunate to live in Phoenix, so I transferred my care to Mayo. Even though it's a 30 mile drive for me, I also have all my labs done there. With the labs the results are available on the patient portal by the time I get home. For my first visit there
I was attached to a BP machine that took my BP six times and showed the average, which is what happens for each visit. I have never had that happen before, even for complete physicals.
Everyone that goes to Mayo is there for something serious, but everyone that you have contact with there, at least in my case makes me completely comfortable.....as comfortable as possible.

I have Medicare with a supplement that has no co-pay, and no deductible. So Mayo is financially viable for me. But be aware that Mayo does not take Medicare Advantage.

The original question was, is going to Mayo worth it.................................Absolutely

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My insurance company told me that Mayo would not accept my Medicare Advantage supplement. I call Mayo and they told me that this is false. My insurance is accepted and I have been seeing doctors there since February. I couldn't be more please with the care I have received.

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Mentor
Laurie, Volunteer Mentor | @roch | Aug 30, 2024

@omioften10

Glad you were able to be seen at Mayo. Insurance companies representative sometimes do not understand that Mayo has multiple locations and policy is different at each location. You did right thing by checking with Mayo, and I usually recommend checking with insurance company, but in your case, the information was incorrect.

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mombee39 | @mombee39 | Nov 15, 2024
In reply to @dawn_giacabazi "@nycdave7 My insurance company covered 100% so I’m not sure pricing but I also know they..." + (show)
@dawn_giacabazi

@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

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I have thyroid problems!
My assigned doctor is to overburden with many people needing help. She does not help me in any way!
I am very depressed, lost much hair tired and have gained 20lbs. I also have stiff person! I am stable with my stiff person. Cannot get in with another endocrinologist for 6 months. I need help now!
Dr.pittock is my neurologist
I need an endocrinologist now!!! Help me mombee39

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Mentor
Chris, Volunteer Mentor | @auntieoakley | Nov 15, 2024
In reply to @mombee39 "I have thyroid problems! My assigned doctor is to overburden with many people needing help. She..." + (show)
@mombee39

I have thyroid problems!
My assigned doctor is to overburden with many people needing help. She does not help me in any way!
I am very depressed, lost much hair tired and have gained 20lbs. I also have stiff person! I am stable with my stiff person. Cannot get in with another endocrinologist for 6 months. I need help now!
Dr.pittock is my neurologist
I need an endocrinologist now!!! Help me mombee39

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I truly believe that Mayo was worth it in every way. My husband has a complex type of cancer that attacks multiple fronts of health. We went to Mayo and they put him on a path to keeping this cancer under control, 14 years and counting.
Here is a link to request an appointment.
http://mayocl.in/1mtmR63
I understand these days it can be very difficult to get help. We waited 6 months for a pet scan locally, for husband, that is beyond unreasonable, but I hear it a lot.
Have you tried any other medical centers besides your regular doctor?

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darienneadams | @darienneadams | Nov 16, 2024

Our family receives care within many departments at Mayo Clinic Jacksonville.

They have an excellent team of doctors and support staff that look at you as a human with needs, not a notch in daily patient count.

We have never seen or received care with such empathy and compassion.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Nov 16, 2024
In reply to @mombee39 "I have thyroid problems! My assigned doctor is to overburden with many people needing help. She..." + (show)
@mombee39

I have thyroid problems!
My assigned doctor is to overburden with many people needing help. She does not help me in any way!
I am very depressed, lost much hair tired and have gained 20lbs. I also have stiff person! I am stable with my stiff person. Cannot get in with another endocrinologist for 6 months. I need help now!
Dr.pittock is my neurologist
I need an endocrinologist now!!! Help me mombee39

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@mombee39 You sound desperate! Are you just working with the doctors in your town? If so, have you considered a comprehensive medical center. It means that they take most all patients and have doctors for all types of situations. The same with university medical centers. Doctors at both usually do research. Can you ‘google’ and see what comes up in your area? Dr. Pittcock is your neurologist—Can you get a referral from Dr. Pittock?
When did the hair loss and weight gain start ?

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preacherswife1977 | @preacherswife1977 | Nov 18, 2024

I went to the Mayo Clinic. I was very impressed with everything. The dr called me in 6 months to follow up. I have also emailed her and she is very prompt to answer. I would highly recommend

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beachthing | @beachthing | Jan 2 2:46pm

I flew there and self-paid for a consultation and am glad I did. They did some testing, repeating what had been done at home. They also (two doctors at once, nice!) reviewed my case with me for two hours, verbally, and then had a Mayo radiologist look over my previous imaging. Nothing new came of the visit but I am glad I went. What if something had been caught that was previously unseen at home? It was good to know, even as I flew home unsuccessfully treated, incompletely treated, and barely diagnosed, that the doctors at home and the Mayo doctors are on a par. Mayo offered to take further steps but they admitted the steps could be done at home and did not push me to stay and pay them for those steps. It was simply awe-inspiring to see Rochester. There no words I can give to describe. Simply breathtaking -- the downtown blocks and also St. Mary's. The hotels, the people, the town itself are wonderful. I will never forget my trip.

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sjs1 | @sjs1 | Jan 9 12:50pm
In reply to @IndianaScott "Hello @nycdave7 David. It was awhile ago and I know every insurance company is unlike every..." + (show)
@IndianaScott

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

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The cost to visit the Mayo Clinic Rochester will depend on geographical and insurance variables. For traditional Medicare with a medigap supplement there was no out of pocket expenses for me except the airfare and hotel room. Yes, I would go again because there is peace of mind knowing you did all you can do to solve your medical issues. However, I didn’t live in a city like New York with top medical facilities.

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