Need Patients' Experience with Mayo Clinic. Is it worth it?

I’m scheduled to go there on the 27th thru 9/05. Any good eating places w/i 1/2 mile. I’m hoping for the best with the neurologists. I just want a diagnosis.

@jeangreer
Is this for Rochester? If so here are some ideas:

Rochester Downtown Alliance list dining options: https://www.downtownrochestermn.com/where-to-eat

Here are some of my favorite:
- Salad Brothers in Galleria for lunch - usually get to go: - https://www.downtownrochestermn.com/go/salad-brothers-cafe-and-deli
- Victoria's - Italian - https://www.victoriasmn.com/
- Chester's - popular restaurant for lunch or dinner - https://chesterskb.com/
- If just looking for a sandwich, there is a Jimmy Johns downtown and think they deliver.

If walk through the subway over to the Galleria, you see many food courts that are open for lunch.

There is a cafeteria in subway level open for lunch. In same area is a coffee shop that also has sandwiches to go. In addition in gift shop can get coffee, other beverages, sandwich, and at lunch few hot meals options.

There are also many delivery options like Ubereats, check with hotel staff, they always have good recommendations.

Do you have any dietary limitations?

Not really

I can tell you beyond any shadow of doubt, we don't regret having gone to Mayo. A week ago, we spent 2+ days there, after local drs discovered tumor on my carotid artery, and were clueless. While at Mayo, I had a molecular-level scan, blood tests, urine test, consults w endocrine neurosurgeon, otorhinolaryngologist, vascular neurosurgeon, and a geneticist. All notes & summaries were available before we even left Rochester, AND when they unanimously decided my tumor was benign, the endocrine specialist delved further because SOMETHING was causing my symptoms, and often there are concerns elsewhere w a carotid body paraganglioma. They did a scan w contrast in the morning just before we flew home and found 2 tumors on my left kidney, sizeable larger than the tumor in my neck., and scheduled another visit end of this mo w renal folks. Everyone there, from receptionists to phlebotomists, to techs, to nurses to surgeons, treated me like I was the only patient at Mayo... no rushing, compassion... the collaboration was something we've never seen anywhere. The finance/insurance dept there said both my insurances were accepted, even preferred providers, which was a plus. The plane tickets, motel, ground transportation, meals total for the trip was between $3,000-$4,000, and we are on a fixed income (retired), but, like my husband says, "haven't ever seen a hearse pulling a Brinx truck". We feel we're in a place for best possible outcome; they would've never found this at home, or even thought to look. I'd have dropped dead from kidney failure and they'd have not known the cause until an autopsy was done. Best wishes for whatever you decide!

I was diagnosed with CKD about 6 years ago, for the first two years I saw a nephrologist that was assigned to me at the hospital. I am fortunate to live in Phoenix, so I transferred my care to Mayo. Even though it's a 30 mile drive for me, I also have all my labs done there. With the labs the results are available on the patient portal by the time I get home. For my first visit there
I was attached to a BP machine that took my BP six times and showed the average, which is what happens for each visit. I have never had that happen before, even for complete physicals.
Everyone that goes to Mayo is there for something serious, but everyone that you have contact with there, at least in my case makes me completely comfortable.....as comfortable as possible.

I have Medicare with a supplement that has no co-pay, and no deductible. So Mayo is financially viable for me. But be aware that Mayo does not take Medicare Advantage.

The original question was, is going to Mayo worth it.................................Absolutely

Went to Mayo Clinic Jacksonville 2.5 years ago after 5 Gastro Dr’s and so many tests and diagnosis.
It’s 3 hrs from us .
Got Air B& B 15 -20 min away on Jacksonville Bch area .
Took 8 months to get in there . Lengthy televisit first w/ Dr.
Had 3 tests in 2 days done .
Same diagnosis (6-7 ) , but no real treatment plan but put me on Mirtazapine ( anti depressant) that’s supposed to help w: Gastro issues .
Oh and Cognitive Therapy.
Like I’m nuts 🥜?
I didn’t do either .
Spent 4 k out of pocket for tests co pays and Dr’s and lodging .
They are well organized once there but couldn’t help me at all .
I still suffer every single day of my life )10 years now .
Saw a new GI an hour away , redid colonoscopy & endoscopy in Mar 24 .
Same diagnosis…
She put me on the anti depressant and I took it 5 months .
It didn’t help at all .
I’m at wits end .
I can’t do anything outside the house except go to appts and grocery shop w/ husband.
I’m too sick 🤢.
I wish I could find one Dr. that could actually help .
I’ve tried it all !! I hope you have better luck 🍀.

Pasquale's for pizza is the best outside of NYC. Terza for Italian food is better than Victoria's in my opinion.

Mayo in Rochester, MN is generally very good with the specialties. Although their mental health department like psychiatry is not very good, IMO. You can be seen for 6 months then they expect everyone to find a provider in the community except most are full and have waiting lists. And if you move here and need their primary care, look out. My doctor does not listen to me. I asked for another doctor and they denied that. And if you need pain management with opioids they won't lift a finger to help your pain. I feel like I wasted thousands of dollars moving here to fix my knees but I can't get past the basics. Good luck!

Mayo in Rochester does take Medicare Advantage, my bills were paid.

Have you consulted an endocrinologist? My dad has to take long term prednisone (a steroid) to treat an inflammatory condition and it’s always a risk for developing adrenal insufficiency, which can cause all kinds of symptoms. Many of the symptoms you mention sound familiar.

I didn’t know this but learned from one of the support groups here about adrenal insufficiency and when I brought it up to my dad’s rheumatologist, she gave a referral to Endocrinology. I had to ask for it though—she didn’t bring it up even though I was reporting his symptoms.

But to your question about Mayo, I think it depends. There’s also the additional hurdle of figuring out whether or not they will see you. As a person with complex chronic pain conditions who’s had care at various levels from top to bottom and two stints at two different Mayo campuses, I can say that the resources at a top institution are much appreciated, but it’s far more valuable to me to have providers who believe me, listen, thing outside of the box and see me, not just “the guidelines,” and are willing to work with me to find the best treatment for me as an individual.

I’ve had multiple horrid experiences at #1 ranked academic medical centers. And a wonderful experience in the basement of a specialist PT who worked out of her home. My experiences have been very dependent on the quality of the provider, not the institution.

Mayo can in most cases integrate care, which is really helpful when it works. But it didn’t work for me, either time that I went, at two different campuses.