1. < Visiting Mayo Clinic

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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sadie168 | @sadie168 | Mar 21, 2019

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

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baker00l | @baker00l | Jan 4, 2022

Oh yes! Mayo Clinic in Jacksonville with Dr. Munipalli and Dr Rizzo was amazing! SO worth it. I drove up from Orlando because I had been a long hauler for 18 months. Before I left, we had a plan on how to jump start my recovery.

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hamillc2 | @hamillc2 | Jan 5, 2022

I went to Mayo Rochester. Eyesight in left eye worsened and had lower limb issues. I was with neurologists at Michigan State University, had 4 mri’s and was told no tumor, but no one could figure out why my optic nerve area was swollen. They sent me to Mayo. I was there a week and was diagnosed with a brain tumor, optic nerve sheath meningioma. Also did my treatment there, proton radiation for 6 weeks. Making my 4th trip to Rochester Monday for my three month checkup! Well worth it!

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2 replies
Mentor
Ginger, Volunteer Mentor | @gingerw | Jan 5, 2022
In reply to @hamillc2 "I went to Mayo Rochester. Eyesight in left eye worsened and had lower limb issues. I..." + (show)
@hamillc2

I went to Mayo Rochester. Eyesight in left eye worsened and had lower limb issues. I was with neurologists at Michigan State University, had 4 mri’s and was told no tumor, but no one could figure out why my optic nerve area was swollen. They sent me to Mayo. I was there a week and was diagnosed with a brain tumor, optic nerve sheath meningioma. Also did my treatment there, proton radiation for 6 weeks. Making my 4th trip to Rochester Monday for my three month checkup! Well worth it!

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@hamillc2 Wow, what a trip it will be, to go in for your checkup! Your story is inspiring, and reminds us to never give up looking for the root of our problems!
Ginger

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lisagraber | @lisagraber | Jan 6, 2022

I went to the Mayo Clinic, in Rochester. I was having blurry vision and burning in both eyes. I saw top ophthalmologist Drs. in Denver, and they couldn’t figure out what was wrong. Mayo took a chance on me, and I diagnosed with Uveitis Posterior Bilateral, through the wonderful, compassionate and amazing Drs. in the Neuro-Ophthalmology Department. They saved my eyes. I’ve made 3 trips up there. I go back in March, and see the Neuro-Opthalmogogy, plus a Neurology and Rheumatology Department. I have other issues goIng on, Dr. Chen and Dr. Starr, had me do a Pet Scan last time. I’m so thankful to all the amazing Drs., and staff at the Mayo Clinic, in Rochester, Minnesota. They are the best Drs. and staff, thank I’ve have the privilege of seeing. So grateful!!!

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 9, 2022
In reply to @hamillc2 "I went to Mayo Rochester. Eyesight in left eye worsened and had lower limb issues. I..." + (show)
@hamillc2

I went to Mayo Rochester. Eyesight in left eye worsened and had lower limb issues. I was with neurologists at Michigan State University, had 4 mri’s and was told no tumor, but no one could figure out why my optic nerve area was swollen. They sent me to Mayo. I was there a week and was diagnosed with a brain tumor, optic nerve sheath meningioma. Also did my treatment there, proton radiation for 6 weeks. Making my 4th trip to Rochester Monday for my three month checkup! Well worth it!

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@hamillc2, I think members in the Brain Tumor group (https://connect.mayoclinic.org/group/brain-tumor-support-group/) would appreciate getting to know you. I'm confident your experience would give comfort to people new to diagnosis. Here are a few discussions you may wish to join. See especially the more recent comments from new-er members.
- How do you not let a brain tumor take over your life? https://connect.mayoclinic.org/discussion/life/
-
Does anyone know how en plaque tentorial meningioma would be treated? https://connect.mayoclinic.org/discussion/does-anyone-know-how-an-en-plaque-tentorial-meningioma-would-be-treate/
- Any Optic Nerve Meningioma Patients Who've Had Surgery? https://connect.mayoclinic.org/discussion/optic-nerve-meningioma-patients/
- Meningioma pressing against the optic nerve https://connect.mayoclinic.org/discussion/meningioma-pressing-against-the-optic-nerve/

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 9, 2022
In reply to @lisagraber "I went to the Mayo Clinic, in Rochester. I was having blurry vision and burning in..." + (show)
@lisagraber

I went to the Mayo Clinic, in Rochester. I was having blurry vision and burning in both eyes. I saw top ophthalmologist Drs. in Denver, and they couldn’t figure out what was wrong. Mayo took a chance on me, and I diagnosed with Uveitis Posterior Bilateral, through the wonderful, compassionate and amazing Drs. in the Neuro-Ophthalmology Department. They saved my eyes. I’ve made 3 trips up there. I go back in March, and see the Neuro-Opthalmogogy, plus a Neurology and Rheumatology Department. I have other issues goIng on, Dr. Chen and Dr. Starr, had me do a Pet Scan last time. I’m so thankful to all the amazing Drs., and staff at the Mayo Clinic, in Rochester, Minnesota. They are the best Drs. and staff, thank I’ve have the privilege of seeing. So grateful!!!

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Lisa, you might wish to follow the Eye Conditions group (https://connect.mayoclinic.org/group/eye-conditions/). I'd appreciate your sharing your experiences with others and giving people hope and support. The prospect of losing one's eyesight is a terrifying thought. I'm glad yours was saved.

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wolffpac | @wolffpac | Jul 15, 2023

Hello, I was wondering if they accept all of the scans, labs etc from the country the patient is coming from or does everything need to be repeated? Scans and all labs are free here which would be a substantial savings.

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 15, 2023
In reply to @wolffpac "Hello, I was wondering if they accept all of the scans, labs etc from the country..." + (show)
@wolffpac

Hello, I was wondering if they accept all of the scans, labs etc from the country the patient is coming from or does everything need to be repeated? Scans and all labs are free here which would be a substantial savings.

Jump to this post

Hi @wolffpac, often scans and tests done at your home location are very helpful when seeking a second opinion at Mayo Clinic. There may be reason that some tests and scans need to be repeated, for example if the scans are not recent or a new scan is needed for comparison. Mayo Clinic doesn't want you to have to have additional test unnecessarily, so only necessary testing would be ordered.

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