Need Patient's 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

@dahlia391hlen

Hello — I went to Mayo Clinic after not being happy with the information and attitude I received from a local eye clinic/ophthalmologist. I knew of a Mayo eye surgeon's reputation and working with my primary care physician to get medical records sent to Mayo I was accepted as a patient and was able to schedule an appointment with that surgeon. I had cataract surgery combined with half membrane corneal cell transplant surgery in 2018. All that sounds like 'star-wars' stuff when I talk about it in my area. At Mayo those procedures are readily performed…not a few times a year, but throughout the year. My surgeon is an amazing fellow and the staff that works with him is amazing as well. I couldn't be happier with my results. My vision improved from 20/60 in one eye and 20/80 in the other to almost 20/20. I'm seeing the best I've seen in decades. People from all over the U.S. and from overseas come to the Mayo Eye Clinic. Mayo is a huge organization, but I never felt lost in the crowd or like I was just another number. I felt the confidence and positive attitude when I walked through the door for the first appointment. I live 700 miles from Mayo Rochester and have ongoing e-mail conversations with my surgeon which saves me trips back to Mayo. My Mayo surgeon was more than happy to partner with a local physician for regular follow-up appointments, again so I didn't have to travel to Mayo or to my University Hospital which is 2+ hours from my home.

Travel/transportation/accommodations can add up if you have to make multiple trips and/or stay for an extended length of time. There are residents in the Rochester area who welcome Mayo patients into their home and support them as their christian mission. I know of two people in my area who stayed in a church affiliated facility and they were very pleased. If you do decide to go to Mayo check with your local churches and you may easily find access to those accommodations. Donations are welcomed, but there is no charge in most of those facilities. There is also a Concierge Office and a Travel Desk at Mayo Rochester to provide information. All the hotels around the Clinic provide complimentary shuttle bus service to the Clinic on a regular schedule.

I did do EFT (Tapping) a few years ago and it helped tremendously with a banged up knee from a fall. It was taught to me by a TaiChi friend and it was easy to learn. Goggle Gary Craig and you'll find lots of information.

Mayo Clinic embraces integrative medicine – a combination of conventional medicine/technology and homeopathic principles. You may find that philosophy much to your liking.

If you get a chance try to find the Mayo Clinic documentary that was produced last year by Ken Burns.

My thought and prayers to you …. L

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Sounds like Rochester follows the same path of outstanding patient care as it little brother in Jacksonville.
Charles Erwin

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@dahlia391hlen

Hello — I went to Mayo Clinic after not being happy with the information and attitude I received from a local eye clinic/ophthalmologist. I knew of a Mayo eye surgeon's reputation and working with my primary care physician to get medical records sent to Mayo I was accepted as a patient and was able to schedule an appointment with that surgeon. I had cataract surgery combined with half membrane corneal cell transplant surgery in 2018. All that sounds like 'star-wars' stuff when I talk about it in my area. At Mayo those procedures are readily performed…not a few times a year, but throughout the year. My surgeon is an amazing fellow and the staff that works with him is amazing as well. I couldn't be happier with my results. My vision improved from 20/60 in one eye and 20/80 in the other to almost 20/20. I'm seeing the best I've seen in decades. People from all over the U.S. and from overseas come to the Mayo Eye Clinic. Mayo is a huge organization, but I never felt lost in the crowd or like I was just another number. I felt the confidence and positive attitude when I walked through the door for the first appointment. I live 700 miles from Mayo Rochester and have ongoing e-mail conversations with my surgeon which saves me trips back to Mayo. My Mayo surgeon was more than happy to partner with a local physician for regular follow-up appointments, again so I didn't have to travel to Mayo or to my University Hospital which is 2+ hours from my home.

Travel/transportation/accommodations can add up if you have to make multiple trips and/or stay for an extended length of time. There are residents in the Rochester area who welcome Mayo patients into their home and support them as their christian mission. I know of two people in my area who stayed in a church affiliated facility and they were very pleased. If you do decide to go to Mayo check with your local churches and you may easily find access to those accommodations. Donations are welcomed, but there is no charge in most of those facilities. There is also a Concierge Office and a Travel Desk at Mayo Rochester to provide information. All the hotels around the Clinic provide complimentary shuttle bus service to the Clinic on a regular schedule.

I did do EFT (Tapping) a few years ago and it helped tremendously with a banged up knee from a fall. It was taught to me by a TaiChi friend and it was easy to learn. Goggle Gary Craig and you'll find lots of information.

Mayo Clinic embraces integrative medicine – a combination of conventional medicine/technology and homeopathic principles. You may find that philosophy much to your liking.

If you get a chance try to find the Mayo Clinic documentary that was produced last year by Ken Burns.

My thought and prayers to you …. L

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Mayo Clinic is almost a sacred place since they hold such a high level of integrity, non profit. I recommend the recent film about them, it's biography.

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@nycdave7
Hi!
So sorry for the issues you are experiencing, especially at such a young age.
I am not a medical professional and I have not ever been to the Mayo Cliniic.
I have tried 3 or 4 times to get an appointment over the last couple of years for issues I've had concerning back pain (an after I exhausted non-invasive procedures).
Each time I was turned down because they had their quota of patients with similar issues.
I most recently tried again.
I've now had 2 spinal surgeries (which seemed to be successful as far as the pain is concerned); one on my cervical and one on my lumbar.
Since June, my legs have been weak, I cannot lift my toes or move my foot from side to side when I am standing, and I've fallen 2 times since I had my lumbar sugery a few months ago.
I have an appointment with a neurologist at the suggestion of my neurosurgeon.
I tried to get a Mayo appointment in Jacksonville, FL.
Again I have been turned down.
I was told I needed to see a neurologist in the spinal dept. but there are no appointments available.
Why do I mention all this? Because IF you CAN get an appointment, grab it. I would!

Good luck!
Ronnie (GRANDMAr)

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@debbraw

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/

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Mayo has just changed their patient computer system to one that does monetize procedures according to two doctors I know there. So they appear to have moved away from putting patients first and have joined the rest of the profit motivated system in this country.

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You are understandably concerned about the cost of treatment at Mayo because of the situation with your insurance. In August 2018 I saw a rheumatoligist, a nephrologist, and an endochronologist all of whom are experts in their fields. I was truly shocked when I saw that the cost of these visits was significantly less than local costs! And the care was exemplary!

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@danavetmom2

Mayo has just changed their patient computer system to one that does monetize procedures according to two doctors I know there. So they appear to have moved away from putting patients first and have joined the rest of the profit motivated system in this country.

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Hi @danavetmom2 There is a new national law requiring hospitals to be able to list the costs of each of their procedures and post them electronically. I believe this is part of the effort of the change over to the Epic system at Mayo. That said my local hospital uses Epic as well and they instituted it for its electronic record keeping ability, which as a patient I love! Every note and result is posted in my private account and available to me from home!

I truly believe Mayo continues to put patient care first.

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GO TO THE MAYO CLINIC THAT WHAT WOULD DO

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We live in Iowa and traveled to Rochester for my husband's transplant due to the care and expertise, even though we were only 25 miles from another hos[ital that did transplants. We are lucky in that it was a "center of excellence" so our insurance covered it. We can't imagine going anywhere else for his care. It was so wonderful and we are glad we made the choice.
Blessings,
JoDee

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Dave, I bounced around for almost a year seeing different specialists. Mayo diagnosed me in 48 hours. I have nothing but positive sentiments towards Mayo. A plethora of specialists converged upon me. My husband had to do battle with the insurance company, but they did end up paying after we hit our after pocket maximum. I spent over three weeks in the Mayo Hospital, and the care and facility was outstanding. This is not an understatement to say they saved my life. You are young; I would encourage you to pull out all the stops for your health. I am two years in remission and grateful for every day. I wish you the best.

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I have been a resident of Minnesota for much of my life and, like most Minnesotans, I have always felt that Mayo Clinic is the gold standard for medicine and that if I ever needed care for a critical problem that is where I would go without question. Well, now that I am older I have developed some conditions that have not been resolved successfully by my regular doctors. So I requested an appointment at Mayo. Much to my surprise, they turned me down. My doctor sent a referral, same result. Their reason was that I was getting adequate care in my home area. If that was the case, why would I need an appointment at Mayo? Anyway, in doing some research, I find that Mayo now prioritizes care according to a person’s insurance. If you are privately insured, you have priority over those on Medicare (even with supplemental insurance) or Medicaid. This was NEVER mentioned in Mayo’s correspondence to me or by the woman I spoke with initially on the phone to request the appointment. I provided my insurance information—including my Medicare number. This system is in place to increase Mayo’s profitability. I understand that Mayo Clinic is not a charity. But I deeply resent the implication by the Mayo web site that “requesting” an appointment is pretty much like making one—much the same as at any docto’s office.
Anyway, my long time feeling of health care security in Minnesota—that I could always count on Mayo to have my back—is gone.

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Yes, it's definitely worth it. I thought I had the best, but Mayo saved my life! Always ask your doctors how many times they have done a procedure, etc. Go where they do the procedure all the time!

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Thanks to all of these responses that are so encouraging and helpful. Obviously, we have a LOT of Mayo fans here – and I'm a big one. I especially want to welcome some of you who are new to posting in Connect: @jrswiontek, @myszka, @chemobile, @dahlia391hlen, @kaysey, and @peaches1234… thanks so much for your great descriptions of what your treatment at Mayo has meant to you. This is so helpful to many others. I hope you stay on here and help others with your rare insight.

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