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

@bjh369

I have a disk with MRI photos cause I ask for it at the time of my Imaging at Simmon Med on January 17th. That's why I would have thought the doctor would of explained anything new on the images at our January25th appointment. Frankly I don't think he did his homework and figured no one would notice I guess. So now we've been told we'll go over it at the next appointment March 22nd. But I am to have a new MRI before that! Doesn't make much sense to me.

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Sometimes more images are needed to check progression or change. Images over time can provide a valuable timeline to aid with diagnosis and treatment.
Another factor to consider is the quality of images. As patients, we often do not understand the minute details that are involved.

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@bjh369 Are you currently getting treatment? The doctor may want another MRI so their is a series for comparison. Keep a notebook handy and whenever you think of a question, write it down so you are prepared for your next visit. Keep notes on everything said! I wish you luck, keep us informed, please. Becky

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@nycdave7 I was reading you post and what you said is a good question. The mayo clinic is exceptional for year l didn't know what was going on with me after a TBI. And my pcp didn't even know and he told me that finally. Then in 2014 after l had my TIP surgery for liver disease. The doctors couldn't figure out why l.was still falling, slurred speech, tremors and disorientation. After going to the Mayo clinic and seeing several doctors and many test. I finally found out they did the TIP surgery wrong. And one of the extra veins in my liver is going a different way either of the normal way. I am still having some problems like slurred speech, falling and disoriented. I went to my new neurologist last month. I knew l went to the hospital but l didn't know what he looked like. I thought he was short and he is tall. And he wanted me admitted to see if l having seizures and they said they told me about this and l can't remember that. And l was arguing with them because they had made the appointment
Then they referred me to a GI doctor and his office said they called me and l told them l didn't need a GI. And l.dont remember that either. And l don't have dementia l had a PET test and a 4hr cognitive test at the mayo clinic and it came back normal but patients with hepatic encephalopathy will have memory problems when their ammonia levels are elevated. But l can do everything like any other person who doesn't have a sickness. I drive, cook, walk, shop, do garden work. And l took a landscape class and l am writing a book about my illness. And soonl.am starting a business helping others with disabilities. And l am reading more book then l every did in my entire life. So l think you will like it and you will get an understanding about your health problems and you will come back with confidence that you can overcome your illness. Good luck and enjoy yourself.

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Hi ill just say money aside Mayo is the best and i had a heart transplant in Arizona. I too would use them for everything but except for the actual transplant year Mayo is out of network for me also. I use federal blue cross blue shield and once i reached my maximum out of pocket which is 7000 everything else was paid. Tje billed charge just for the transplant was a little over 800000 thank God that was covered. But just recently i had to be hospitalized 2 weeks ago for a low hemoglobin issue and i know that week according to Mayo Account Service will bill the insurance about 80000. Now for me since my one year anniversary on 5 Jan 2019 Mayo became out of network. I have seen a few drs bills already and for a cardiac doctor ot will cost me about 500 for him but his PAs are better at 71 a day. Im still waiting to see what mayo will charge me. But like others have said they are worth it. But the part that impressed me the most is that for things that can be done outside of Mayo they work with follow up doctors to i sure that all the information available at Mayo was transferred to the outside drs. I have to continue treatment of my hemoglobin issue and the dr at Mayo called my outside hematologist and made sure he knows what the found and did at Mayo during my hospital stay. I really like there attitude when it comes to making sure the Patient care is there #1 priority.

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Why on earth did you have to have cortisone for eye surgery? I was on Cortisone for giant cell arteritis & it took me one year very gradually be able to stop… serious side efects.. Could not get the surgery I needed in Canada went to Mayo Jacksonville & had it done there: excellent care
Also have been to Rochester for Executive checkup again impressed. Not so much on my last visit at Jacksonville.. Although it is supposed to be non profit…all of a sudden like everywhere & anythi g else it has become very expensive..I had a new Internist who scheduled tests after tests without discussing with me & I had to cancell tests I did not need (they had been done very recently in Canada$
Even then my bill was huge & I did not leave with a solution because I felt I was a cash register so I interrupted the process not wanting to end up with a $100,000.00 bill!

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bjh369, in the past year I learned a lot from my tests and doctor appointments. I had an abdominal CT, when the report was sent to my PCP it said, along with other things, that I had severe stenosis of my SMA artery. I was sent to a vascular surgeon who was gearing up for a bypass surgery. Long story short, even though I gave them my disc of the CT he based his information on the report. I wanted more information so I went to another vascular doctor and had an ultrasound done. They have no clue why the radiologist stated I have stenosis of any kind in that artery because I don’t. Years ago I had a brain MRI and the report came back saying there was a mass. When I was sent to a neurosurgeon he said there was no mass. Not that this is true in your case, but apparently not all radiologists are trained to properly read these tests. Also, always ask for test to be put on disc and always get copies of bloodwork. I have learned that even though your levels fall with the labs “normal” limits, they may not be normal for you. I have had undiagnosed pernicious anemia for years because my B12 level was never flagged as low. We truly need to be our own advocates. I wish you luck!

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To clarify, these things did not happen at MAYO. I am however, going there in April. Hoping for answers.

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