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

@jackiem95

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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I empathize, because I had this happen just today when I tried to get an appointment for my stepdaughter. Turned down….a/c they feel she is getting adequate care in her home area. The truth of the matter is that the functional medicine practitioner who was treating her has been censured three times by the FDA for performing unproven experimental treatments on human subjects. The California Medical Board served him with an Accusation Letter as the first step in revoking his license. He closed his practice before they could take that action. And this is the "adequate care" Mayo says my daughter is getting! Now we have to start all over again looking for a reputable doctor for her.

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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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This is the key to Mayo 100%. Their core values are doing everything they can to make you well. Not that you are a profit center. Their team approach is the key. They made all of the appts. and I just showed up. Compassionate treatment by all those involved. I am on Medicare so my treatment was 100% covered for my routine cancer. I don't know what any experimental treatments cover. I had mediocre treatment at some of the best hospitals and doctors in the Chicago area. I do not regret going to Mayo.

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@kaysey

I empathize, because I had this happen just today when I tried to get an appointment for my stepdaughter. Turned down….a/c they feel she is getting adequate care in her home area. The truth of the matter is that the functional medicine practitioner who was treating her has been censured three times by the FDA for performing unproven experimental treatments on human subjects. The California Medical Board served him with an Accusation Letter as the first step in revoking his license. He closed his practice before they could take that action. And this is the "adequate care" Mayo says my daughter is getting! Now we have to start all over again looking for a reputable doctor for her.

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Sad story.

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@jackiem95

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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I am on Medicare and received treatment for my rare cancer immediately after my local docs dropped the ball. Perhaps your condition is not rare?

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@bluemeade7

This is the key to Mayo 100%. Their core values are doing everything they can to make you well. Not that you are a profit center. Their team approach is the key. They made all of the appts. and I just showed up. Compassionate treatment by all those involved. I am on Medicare so my treatment was 100% covered for my routine cancer. I don't know what any experimental treatments cover. I had mediocre treatment at some of the best hospitals and doctors in the Chicago area. I do not regret going to Mayo.

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It wasn't a matter of the lack of insurance or the kind of insurance my daughter has. She has good private insurance. So, frankly, I don't see how they can justify turning her away on the assumption that she already has adequate care locally.

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@jackiem95

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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Is this true? That means they won't take me again? Former patient from 2016.

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I honestly don’t know if this applies to former patients. Suggest you call Mayo and ask.

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@bluemeade7

This is the key to Mayo 100%. Their core values are doing everything they can to make you well. Not that you are a profit center. Their team approach is the key. They made all of the appts. and I just showed up. Compassionate treatment by all those involved. I am on Medicare so my treatment was 100% covered for my routine cancer. I don't know what any experimental treatments cover. I had mediocre treatment at some of the best hospitals and doctors in the Chicago area. I do not regret going to Mayo.

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I am not disputing the quality of care or their commitment to patients. But they are not a nonprofit organization. The interviews with their CEO on this matter stated specifically that the decision to prioritize privately insured patients Was related to increasing profitability. I would guess that if a certain department or specialty has availability in their schedule and no privately insured patients apply, they may take a Medicare or Medicaid applicant.

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@healthytoday

Is this true? That means they won't take me again? Former patient from 2016.

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I doubt that this applies to someone who is already in the Mayo system.

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@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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Hi Dawn, thank you for replying. Sorry for not getting this response earlier. I did have a pitutary mri scan but they only found a micro adenoma. Problem is with the exception of an once mildly high ACTH test, others have come within normal range. Neurosurgeon in NYC recommended a DDAVP test but utilizing the drug can worsen my symptoms of hypertension since that drug promotes fluid retention. I do notice myself sleeping from 9PM to 1AM, and going back to sleep at 4- 5AM. Prior to the corticosteroids, I have never been sick in my life since I was 10 years old (pneumonia). I went on the steroid eye drops at 22 years old for 6 weeks. Noticed during the winters I get this wierd episode of Chillblains, sometimes the toes can turn into a light black color. Not sure if this is due to cortisol induced hypertension. Have horizontal beau's lines on fingernails and occasionally random hemotoma on one of my finger nails. Recently, had 2 tests that showed elevated creatinine clearance in 24 HR urine, but normal creatinine serum. Not sure if all this has any relation to the high cortisol levels and the elevated blood pressure. BP tends to be lower in the winter compared to hot / humid summers.Tired of visiting NYC doctors that cannot provide answers but just charge you

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@sall

We were at the Rochecter, Minnesota. It was very thorough. My husband was electrocuted with on visible injuries but 4 months after he had a blood clot pass through his heart into his lungs. For a year almost he had health issues that the neurologist would tell him it was anxiety. Finally in Dec 2008 we went to Mayo. They set you up with appointments concerning your health issues, go over your previous test and procedures performed and results. We had approximately 8hrs of Monday to Friday appointments for 11 days. Although he was told that no medical electrocution would not cause this to happen, we found answers for other issues. He still has issues i believe is caused from the electrocution because it seems like temporal lobe epilepsy, blood pressure issues, and heart rate all seem to be the effect of the bodies electrical currants. He had issues to where after cardio exercise blood pressure and his heart rate gets power then normal. He to a break from his workout because he messed his knee up from over stretch. He would work our for two hours. Now starting back to exercise and diet his blood pressure is dropping again to the point of almost passing out but heart rate stays 54-74 with pressures low. Any back to our visit at Mayo i do feel it was definitely worth going.

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thank you for your response. Reading these type of experiences give me hope in life.

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We live on the east coast. My husband and I are both patients at Mayo Rochester. The only way I can describe Mayo to those who have not experienced this level of medicine is to say that when I go elsewhere for care, I KNOW I’m settling for second best.

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