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

Interested in more discussions like this? Go to the Visiting Mayo Clinic group.

@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!

Jump to this post

@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/

REPLY
@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!!!

Jump to this post

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.

REPLY
Please sign in or register to post a reply.
  Request Appointment