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

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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@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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I'm sorry you had a bad experience. Did you contact them about your temozolomide? Your paperwork should be able to be found on the portal under notes and documents. Did you try looking there?
JoDee

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@jodeej

I'm sorry you had a bad experience. Did you contact them about your temozolomide? Your paperwork should be able to be found on the portal under notes and documents. Did you try looking there?
JoDee

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I was told they could not place their attachment on the portal any place.

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@bjh369

I was told they could not place their attachment on the portal any place.

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Hmmmm….
Could they email or fax it to you?

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Doctors nurse said they can't email it…against heppa law. They can fax it but we don't have a fax. So I asked if they'd put it in the mail but no word back about that:(

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@bjh369

Doctors nurse said they can't email it…against heppa law. They can fax it but we don't have a fax. So I asked if they'd put it in the mail but no word back about that:(

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Have them FAX to your pharmacy.

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I am in Mn now at Mayo. It’s worth everything to come here. In 2015 they changed my life with a brain surgery. I’m here for something else but I know I will get the best care in the nation here.

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@user_chf56161a

I am in Mn now at Mayo. It’s worth everything to come here. In 2015 they changed my life with a brain surgery. I’m here for something else but I know I will get the best care in the nation here.

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Thank you! I was wondering how the surgeons and patient care was similar or different than the Jacksonville campus which is closer to me. I believe MN has more NSs and that’s comforting in case something goes awry.

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@user_chf56161a

I am in Mn now at Mayo. It’s worth everything to come here. In 2015 they changed my life with a brain surgery. I’m here for something else but I know I will get the best care in the nation here.

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A team from Barrows Brain and Spine did my surgery and they did a wonderful job. Then I went to Ironwood Cancer Center for my 1st round of chemo and radiation. Now I'm going to Mayo Clinic and really am not impressed at all:( I am not impressed with my doctor at all.

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@bjh369

A team from Barrows Brain and Spine did my surgery and they did a wonderful job. Then I went to Ironwood Cancer Center for my 1st round of chemo and radiation. Now I'm going to Mayo Clinic and really am not impressed at all:( I am not impressed with my doctor at all.

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@bjh369, it should not be like that. I encourage you to contact the
Office of Patient Experience
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
– Scottsdale campus 480-301-4938
– Phoenix campus 480-342-2651
– Jacksonville campus 904-953-2019
– Rochester, Minnesota, campus 507-284-4988
Email: officeofpatientexperience@mayo.edu

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