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Need Patients' 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

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David | @nycdave7 | Jan 26, 2019
In reply to @dawn_giacabazi "@nycdave7 My insurance company covered 100% so I’m not sure pricing but I also know they..." + (show)
@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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David | @nycdave7 | Jan 26, 2019
In reply to @sall "We were at the Rochecter, Minnesota. It was very thorough. My husband was electrocuted with on..." + (show)
@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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annedodrill44 | @annedodrill44 | Jan 26, 2019

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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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 26, 2019

@nycdave7 Hi there. I am sorry to hear that you aren't feeling well and feel that you aren't getting optimum care. I have been a patient at the Mayo Clinic in Jacksonville since 2013. I was referred there by my local pulmonologist in S.C. because I was on the brink of needing a double lung transplant. I could barely walk without totally running out of breath. I stayed home most of the time because I had a continuous cough that went on for yrs and no energy. The doctors there knew how to treat my rare lung disease and pulled me out of the danger zone where I no longer needed a lung transplant. Nowadays, I walk all I want and ride my bicycle 12 miles. I have my life back now. Besides the great care; the Mayo is run like a well oiled machine. All lab work and tests are done all in one day (when possible) and the results are ALL back the same day. Then, at the end of the day, you have a consult with a physician, or a team of doctors. At that consult; results are fully explained and a treatment plan is presented. No more waiting days to weeks to get test results or proper care. Since I have experienced care at Mayo; I wouldn't trust my health to anyone else. I hope this helps, and I hope you get to feeling better soon.

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1 reply
lioness | @lioness | Jan 26, 2019
In reply to @windwalker "@nycdave7 Hi there. I am sorry to hear that you aren't feeling well and feel that..." + (show)
@windwalker

@nycdave7 Hi there. I am sorry to hear that you aren't feeling well and feel that you aren't getting optimum care. I have been a patient at the Mayo Clinic in Jacksonville since 2013. I was referred there by my local pulmonologist in S.C. because I was on the brink of needing a double lung transplant. I could barely walk without totally running out of breath. I stayed home most of the time because I had a continuous cough that went on for yrs and no energy. The doctors there knew how to treat my rare lung disease and pulled me out of the danger zone where I no longer needed a lung transplant. Nowadays, I walk all I want and ride my bicycle 12 miles. I have my life back now. Besides the great care; the Mayo is run like a well oiled machine. All lab work and tests are done all in one day (when possible) and the results are ALL back the same day. Then, at the end of the day, you have a consult with a physician, or a team of doctors. At that consult; results are fully explained and a treatment plan is presented. No more waiting days to weeks to get test results or proper care. Since I have experienced care at Mayo; I wouldn't trust my health to anyone else. I hope this helps, and I hope you get to feeling better soon.

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@windwalker I know no one is happier then you but so happy for you

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JK | @contentandwell | Jan 27, 2019

@nycdave7 hi Dave and welcome to Connect.
I have not ever been treated at Mayo so I can not attest to their care, but I do go to Mass General for most of my care - I live in southern NH. I had a liver transplant there and now go there for everything except my PCP care. I know that Mayo is very highly rated, #1 in the country on many rating sites, but I cannot think of a single negative thing about MGH. They are also wonderful. On one rating site they were actually rated #1! Also, different hospitals often are rated more highly in some specialties than they are in others. If I were you I would I would check out some of the sites that rate hospitals to see if there is a hospital closer to you that is also excellent.
Although Mayo is a really great medical facility it is not convenient for everyone. I see you live in NYC (my daughter does also). I am sure there are some top-notch, highly rated hospitals there too, such as Columbia. US News and World Reports has excellent hospital ratings. Mayo is #1, followed by Cleveland Clinic, Johns Hopkins, and MGH in the top 4. I chose MGH for convenience and their high rating and have never regretted it.
I hope you do find some top medical care either at Mayo or elsewhere. I know how frustrating it is to not know what is causing a problem.
JK

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Harriet Hodgson | @harriethodgson1 | Jan 27, 2019

It's my understanding that Cleveland Clinic is patterned after Mayo. I live in Rochester, MN, home base for Mayo Clinic, and get all my care there. Mayo has kept my husband and me alive.

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Harriet Hodgson | @harriethodgson1 | Jan 27, 2019

Do you have a primary care physician? I have two leaking heart valves, one leaking quite a bit, and am following the advice of my primary care physician and Mayo Clinic cardiologists.

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elwooodsdad | @elwooodsdad | Jan 28, 2019

Mayo treated me 60 years ago for a tumor in the mastoid and along the facial nerve. O.E. Hallberg, M.D. had developed a then new surgical approach, did the surgery, and all went well. The best part is how this then 10 year old was treated. I was his patient, and my parents were welcome to sit in on the diagnosis and proposed surgery. The human factor, along with the combined medical expertise, makes Mayo a top choice. Always a warm spot in my heart for Mayo, Dr. Hallberg, and the Mayo Fellows who looked after me.

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bosombuddy | @bosombuddy | Feb 1, 2019

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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