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

@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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@colleenyoung

@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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Now the Doctor says in a recent message through the portal that he's gone back over the MRI and says that he'd gone over it with Don & i on the 25th of January. However there were only 2 MRI pictures on his computer screen during our visit that day…..1 was pre-surgery MRI & the other was recent. He just said, "Even though the report didn't say so, the MRI looked good". At that time I hadn't seen the recent MRI report so I didn't know what questions to ask, but I've seen it now and why he didn't show us the mass the Simmon Med imaging person saw…I have no clue! Not a very comforting feeling for me.

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@bjh369

Now the Doctor says in a recent message through the portal that he's gone back over the MRI and says that he'd gone over it with Don & i on the 25th of January. However there were only 2 MRI pictures on his computer screen during our visit that day…..1 was pre-surgery MRI & the other was recent. He just said, "Even though the report didn't say so, the MRI looked good". At that time I hadn't seen the recent MRI report so I didn't know what questions to ask, but I've seen it now and why he didn't show us the mass the Simmon Med imaging person saw…I have no clue! Not a very comforting feeling for me.

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@bjh369 Did you ask for a new appointment to see the MRI? Whenever I have an MRI, I’m given a disc with all the pictures. Not that I can read them, but I can tell if something looks better or worse. Call for an appointment! Be a pest if you need to! “Nevertheless she persisted”. Let us know what you learn—we care

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@bjh369

Now the Doctor says in a recent message through the portal that he's gone back over the MRI and says that he'd gone over it with Don & i on the 25th of January. However there were only 2 MRI pictures on his computer screen during our visit that day…..1 was pre-surgery MRI & the other was recent. He just said, "Even though the report didn't say so, the MRI looked good". At that time I hadn't seen the recent MRI report so I didn't know what questions to ask, but I've seen it now and why he didn't show us the mass the Simmon Med imaging person saw…I have no clue! Not a very comforting feeling for me.

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@bjh369 did you contact the Office of Patient Experience? They can help you with this situation. Please call them first thing tomorrow morning.
– Scottsdale campus 480-301-4938
– Phoenix campus 480-342-2651

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@ees1

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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@ees1 Please excuse my ignorance, but what is NS?
JK

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@becsbuddy

@bjh369 Did you ask for a new appointment to see the MRI? Whenever I have an MRI, I’m given a disc with all the pictures. Not that I can read them, but I can tell if something looks better or worse. Call for an appointment! Be a pest if you need to! “Nevertheless she persisted”. Let us know what you learn—we care

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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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@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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