Need Patient's Experience with Mayo Clinic. Is it worth it?

Posted by David @nycdave7, Sat, Jan 19 11:30pm

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

@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

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

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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

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@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 😂

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@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!!

Liked by healthytoday

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@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!!

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@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

Liked by healthytoday

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In 2008 I had 5 epidural steroid shots for a bulging disk and within 1 month I was all swollen, blood pressure was extremely high and I was ravinishly hungry. I did all the tests you mentioned and the 1st Endrocronologist couldn't find a thing. The 2nd Endrocronologist who had been in practice for years knew immediately that I was 1 in 100thousand that was highly allergic to steroids. Said it would take two years to completely leave my body.
I can't tell you yet if Mayo is better than the rest cause I am just getting started with them for my brain cancer but I do know it helps to have someone that has…so to speak…been around the block. Good luck to you.

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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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@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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@dahlia391hlen Wow, you hit the jackpot! I’m so happy for you! And lots of good info for the group. Thank you. Becky

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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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Absolutely Wow!!! What great information 👍. Thank you so much.

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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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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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