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

@rosemarya

@bosombuddy, I just happened to be strolling thru messages today, and saw your post. I extend a virtual handshake and a sincere welcome to Mayo Connect. I am also amazed at the level of care and the professionalism at Mayo. I received my organ transplant – my life – at Mayo in Rochester. I also live out of state (800 miles).
I would like to invite you to browse thru the Groups and the Pages on Connect. You will find many other patients who are sharing their experiences and supporting each other along their health journey. Feel free to join in anywhere.
If you would like assistance to locate a particular topic of conversation, let me know.

Blessings to you and your surgical team as you embark on your surgery.

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Thank you, Rosemary. I am new to this forum and the whole breast cancer adventure. I appreciate the hugs and the info to prepare for surgery. It is invaluable!

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@bosombuddy

Thank you, Rosemary. I am new to this forum and the whole breast cancer adventure. I appreciate the hugs and the info to prepare for surgery. It is invaluable!

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This forum can be confusing when you first get started. I have no breast cancer experience to share or to enable me to walk with you. I will be available to answer and help you in any way that I can, though. By using @rosemarya, I will get a notification – but I have a feeling that you will find others who are familiar with what you are facing if you look at what I am sharing below. Just click, and you are there.

Breast Cancer Discussions – https://connect.mayoclinic.org/group/breast-cancer/
Cancer Education Center – https://connect.mayoclinic.org/page/cancer-education-center/

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@rosemarya

This forum can be confusing when you first get started. I have no breast cancer experience to share or to enable me to walk with you. I will be available to answer and help you in any way that I can, though. By using @rosemarya, I will get a notification – but I have a feeling that you will find others who are familiar with what you are facing if you look at what I am sharing below. Just click, and you are there.

Breast Cancer Discussions – https://connect.mayoclinic.org/group/breast-cancer/
Cancer Education Center – https://connect.mayoclinic.org/page/cancer-education-center/

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That is exactly what I needed. Thank you so much, Rosemary!

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@bosombuddy

My experience has been awesome at JAX. So much so that I scheduled a bit of a tricky surgery at Mayo in a couple weeks. I have done my research locally (doctors and oncologists) but continue to be amazed at the level of caring and professionalism at Mayo. It would have been more convenient to do it where I live (out of state) but I feel I have one chance to get it right and I’ll deal with a little inconvenience to go there. Good luck, what do you have to lose?

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@bosombuddy this is exactly how I feel about MGH. I now go there for everything except my PCP. Its definitely worth the time. MGH is about 55 miles from me, to go there mid-day we leave 2 hours for travel. The doctors there are all wonderful though.
JK

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@contentandwell

@bosombuddy this is exactly how I feel about MGH. I now go there for everything except my PCP. Its definitely worth the time. MGH is about 55 miles from me, to go there mid-day we leave 2 hours for travel. The doctors there are all wonderful though.
JK

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@contentandwell , what does MGH stand for?

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@dandl48

@contentandwell , what does MGH stand for?

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@dandl48 Sorry, being originally from Massachusetts, and now in southern NH I assume everyone is aware. It is Massachusetts General Hospital.
JK

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@contentandwell

@dandl48 Sorry, being originally from Massachusetts, and now in southern NH I assume everyone is aware. It is Massachusetts General Hospital.
JK

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@contentandwell Thanks I should of figured it out been here to long forget a lot of Pa. @east

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Thank you all for your good insight. I will be going to the Mayo campus in Jacksonville for my second visit next week.My last one was right before they closed for Hurricane in 2016. Does anyone know if the Jacksonville campus is strong in urology?

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@emerg2trauma

Thank you all for your good insight. I will be going to the Mayo campus in Jacksonville for my second visit next week.My last one was right before they closed for Hurricane in 2016. Does anyone know if the Jacksonville campus is strong in urology?

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Welcome to Connect. I hope that this visit will less eventful that facing a hurricane!
When you are treated at Mayo Clinic, you might be seen by one doctor, however there is a team of specialists who will consult and participate in your care. All of the Mayo Campuses communicate with each other, too.
If you read my response about needing to go to Rochester, that is because of rare diagnosis.
Here is the Urology Dept – https://www.mayoclinic.org/departments-centers/urology/home/orc-20336012

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I expected more out of my Doctor at Mayo. He told me my MRI looked good however I got the report from Simon Med and it said I had a 1/4cm x 9mm x 4mm tumor. I don't know why the doctor didn't go over that and what it meant to me but he didn't. I was told I'd have my temozolomide by last Wednesday and still haven't heard a thing! I was told I'd get paperwork through the Portal right away. Then found out they can't send attachments through the portal! So I'm really not impressed at all:(

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I have smoldering multiple myeloma, multiple sclerosis, CHF, and high BP. I went to the Mayo Clinic about 15 months ago and had tests results that answered a lot of questions for me. It didn't change any of my diagnoses but I had answers for the first time. I had from 2-5 tests every day for 5 days. Like you, I am out of network and have a PPO. I called my insurance company and they told me I could get a second opinion anywhere I chose to go. The clinic costs to me were about $1500 as near as I can figure out from my old records, many a little more. I had expected to spend maybe $5000 so this was good. My airfare, hotel, and meals were extra, of course. I shopped around for airfares and hotel costs and stayed across the street from the clinic. I am thinking about going back again as it looks like I may need to start treatment for the myeloma and would want a second opinion on this aspect.

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@bjh369

I expected more out of my Doctor at Mayo. He told me my MRI looked good however I got the report from Simon Med and it said I had a 1/4cm x 9mm x 4mm tumor. I don't know why the doctor didn't go over that and what it meant to me but he didn't. I was told I'd have my temozolomide by last Wednesday and still haven't heard a thing! I was told I'd get paperwork through the Portal right away. Then found out they can't send attachments through the portal! So I'm really not impressed at all:(

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bjh369, This does sound confusing and disappointing for you. I suggest that you contact the office that you were expecting to hear from. There should be a phone number on your paperwork where you can reach someone about this.

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@rosemarya

bjh369, This does sound confusing and disappointing for you. I suggest that you contact the office that you were expecting to hear from. There should be a phone number on your paperwork where you can reach someone about this.

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They told me to inform them through the portal…so I just let them know what's been happening and how I felt about it….

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@karlene

I have smoldering multiple myeloma, multiple sclerosis, CHF, and high BP. I went to the Mayo Clinic about 15 months ago and had tests results that answered a lot of questions for me. It didn't change any of my diagnoses but I had answers for the first time. I had from 2-5 tests every day for 5 days. Like you, I am out of network and have a PPO. I called my insurance company and they told me I could get a second opinion anywhere I chose to go. The clinic costs to me were about $1500 as near as I can figure out from my old records, many a little more. I had expected to spend maybe $5000 so this was good. My airfare, hotel, and meals were extra, of course. I shopped around for airfares and hotel costs and stayed across the street from the clinic. I am thinking about going back again as it looks like I may need to start treatment for the myeloma and would want a second opinion on this aspect.

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Hi, Karlene. Welcome to Mayo Connect. That is great to hear that your insurance company was ready to support your quest to get a 2nd opinion. It is even better to hear that you got a lot of your questions answered. My experience (ogan transplant) tells me that with answers, I at least knew what I was facing, and I could prepare for whatever was in my future.

Here are a couple of sites where other members are discussing and sharing their experiences with related diagnoses. I invite you to participate anywhere. You can read, post comments, ask questions. You
https://connect.mayoclinic.org/group/blood-cancers-disorders/
https://connect.mayoclinic.org/discussion/multiple-sclerosis-ms-please-introduce-yourself/

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@bjh369

I expected more out of my Doctor at Mayo. He told me my MRI looked good however I got the report from Simon Med and it said I had a 1/4cm x 9mm x 4mm tumor. I don't know why the doctor didn't go over that and what it meant to me but he didn't. I was told I'd have my temozolomide by last Wednesday and still haven't heard a thing! I was told I'd get paperwork through the Portal right away. Then found out they can't send attachments through the portal! So I'm really not impressed at all:(

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Hopefully, this is an anomaly and will be quickly rectified. I was on Temozolmide and missed my first dose due to my insurance company dragging their feet. That drug was harder in me than the infused chemo. Good luck with it

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