“To inspire hope and contribute to health and well-being by providing the best care to every patient through integrated clinical practice, education and research.”
– Mayo Clinic Mission Statement
There is a reason why the Mayo Clinic in Rochester, Minnesota continually ranks number 1 in the world for patient care and treatment. They are innovative, patient focused and forward thinking, and their team based approach to healthcare ensures their patients receive expert opinions across a wide range of fields and medical specialties.
The Mayo Clinic facilities and grounds are soothing, and designed to feel more like a luxury four-star hotel than a treatment center. Their central scheduling model, which gives patients a print out of upcoming appointments, is convenient and easy to read and navigate.
How do I know all this? I tagged along with my husband for appointments and treatments at the famed Mayo Clinic for a week in early May. Below is an account of our experience, and why we would recommend the Mayo Clinic for anyone dealing with a complicated medical issue or diagnosis.
For the background story on how we ended up visiting the Mayo Clinic you can follow the link HERE.
The first thing we noticed upon arriving in Rochester, Minnesota for our Mayo Clinic appointment was just how large the medical compound and grounds were. The Mayo Clinic is made up of a multitude of buildings and wings, each specializing in a different field of treatment. Every building is connected by either an underground pedestrian “subway”, or enclosed “sky tunnels” that also lead to hotels, restaurants and shopping areas. You can pretty much visit all of downtown Rochester without ever taking a step outside.
Map Building Campus
There are navigational maps and “greeters” everywhere to help you find your way from appointment to appointment, and clearly marked entryways and elevators throughout.
If you have some time to kill between appointments, you can pick up a brochure for a self-guided tour of some of the impressive artwork displayed in the halls. You can also schedule a free tour of the clinic and grounds. There is a free museum inside the hospital that you can visit, or you can relax in the atrium and listen to volunteers playing piano and entertaining the crowds.
The Mayo clinic also has an amazing amount of “green space” around the compound where you can sit on benches or chairs in the sun, enjoy a snack from the cafeteria or one of the many restaurants in the pedestrian subways. A lot of people just sat outside to admire the landscaped trees and flowers. Even if you are not a patient at the clinic, it would be worth it to walk the area just to admire the many statutes and architecture on display.
Of course, people don’t visit the Mayo Clinic just for the ambiance, and we were no exception. My husband had an appointment bright and early Monday morning to meet with a top-notch neurologist to try and get a diagnosis for the medical condition that had been plaguing him for years.
Day 1 (Monday)
We arrive at the Mayo Clinic at 6:30 a.m. for our 7:00 appointment with Dr. Eoin Flanagan in the neurology department located on the 18th floor of the Gonda Building. There is a short line for the check-in desk and it is our turn after a brief wait. The very nice lady behind the counter went over the basics like insurance, and then made a folder with BJ’s name and patient ID on it. She takes all the copies of MRIs, tests, scans and physician notes we brought with us, and hands us a clipboard with papers to complete. We are instructed on the patient website, then directed to have a seat in the well appointed waiting room.
Before I could even get all the information filled out for BJ’s paperwork, his name is called and we are led to the clinic entrance where they take his vitals. Then we are led down a long hallway with doors on either side. Each door has a row of lights that indicate what patient is in the room, and what physician would be treating them. BJ is shown to his treatment room and an assistant comes in to record some of BJ’s information on his computer chart.
Dr. Flanagan arrives a few minutes after the assistant leaves, and begins to review BJ’s records. After talking with BJ at length about his symptoms, he has BJ go through a series of examinations to evaluate his vision, balance, reflexes and strength. He tells BJ that he is leaning towards an initial diagnosis of MS and proceeds to show us the lesions on one of BJ’s brain scans that lead him to this conclusion. BJ’s lesions are a-typical for MS which is why he was unable to get a diagnosis, even after visiting John’s Hopkins in Baltimore. Dr. Flanagan shows us a recent clinical paper regarding lesions similar to BJ’s that have proven to be MS related.
Dr. Flanagan then dictates his notes with us present so we are able to point out any inaccuracies and then outlines what we can expect for the rest of our stay at Mayo. This includes blood tests, a visit with a sleep specialist, a mobility clinic and finally MRI’s of the brain and spine. At the end of the visit, there will be a follow up appointment with Dr. Flanagan and hopefully a final diagnosis.
We leave the treatment room and are directed to the scheduling desk. Dr. Flanagan advises the attendant what he has planned for BJ for the rest of the week. We are again led out to the waiting area, and after a few minutes, we are handed a schedule with appointment dates, times and locations for the duration of our stay. This information also gets uploaded to our patient portal. It is beyond efficient.
The first thing on our schedule is blood work, so off we go to the laboratory, located in the Hilton building. Again, our wait time is short, and soon BJ is giving 9 vials of blood for testing. Then we are off to the sleep clinic, located in the Mayo Building.
Once we check in with the Sleep Clinic, BJ and a few other patients go to a room for an orientation on the sleep test they will be doing that night. BJ is given a machine with a monitor he has to clip on his finger before he goes to bed that night, and he has to manually record any time he is up and awake. This test checks for sleep apnea and other sleep disorders. We check our schedule and see that we are free for the rest of the day. It is now late afternoon and we decide to grab an early dinner before turning in. Before we can even get out of the building, our patient portal notifies us that some of BJ’s blood test results are already available for us to review. Everything so far is negative, and we marvel at the turnaround time for those tests.
We end up walking through downtown Rochester to a funky Mexican restaurant called Hefe Rojo.
The food was just ok, but the ambiance made up for it. While we were at dinner, the rest of BJ’s blood test results came in through our patient portal. All negative. We head back to our hotel room for an early night. BJ set up his sleep monitor and found a Bruins game, while I flipped through a local paper. Tomorrow is another busy day.
Day 2 (Tuesday)
We woke up early and got the free hotel breakfast. BJ packed up his sleep monitor and we head back to the Mayo building to return the machine. Our appointment with the sleep doctor wasn’t until 2:00, so we decided to explore some of the shops down in the pedestrian subway. We eventually made our way to a hotel bar that had a great outdoor sitting area. The temperature is in the 70’s, so we take advantage of it. We would spend a lot of time here in the next couple days.
I discovered a drink called “Citrus Collins” that became my new favorite. Before we knew it, it was almost 2:00 and we head back to the Mayo building for our sleep appointment.
If you have read my post called Free Falling (you can find a link to it HERE) then you already know about some of the issues BJ has been having with falling out of bed at night. Dr. Flanagan thought this issue could be related to the location of some of the lesions on his brain, and sent us to see Dr. Michael Silber for a consultation.
Dr. Silber was a very trippy dude. He had a thick British accent, and a very dry demeanor. But like everyone at Mayo, he was very professional and very knowledgeable. The first thing he did was review BJ’s test results from his sleep monitor. The good news was that BJ did not have sleep apnea, and his oxygen levels throughout the night were good. So the discussion turned to what was causing BJ to fall out of bed three times in the past month.
There is a disorder that is not uncommon for people with brain lesions called REM Sleep Behavior Disorder (RBD). During REM sleep, your body becomes paralyzed to stop you from acting out your dreams. In people with RBD, that paralysis is either absent or incomplete, allowing the person to act out their dreams. Dr. Silber thought BJ could be suffering from this disorder and recommended a comprehensive study at the overnight sleep clinic for that night. But, because of BJ’s anxiety issues which appeared when his illness started, he was not willing to spend the night in the sleep clinic. We decided that we needed to concentrate on finding a diagnosis for the underlying issues, and any sleep disorders could be dealt with at another time.
The sleep clinic was interesting, and worth out time just to confirm BJ did not have apnea.
After leaving the sleep clinic, we headed back downtown to our favorite bar for a drink and to relax and unwind together.
After a couple of drinks, we headed back to our hotel and ate at the hotel restaurant. We didn’t have anything scheduled for the next day, so we planned on sleeping in and then exploring more of the area.
Day 3 (Wednesday)
With nothing on our agenda today, BJ and I decided to explore more of the city.
Rochester, Minnesota is one of the cleanest, safest feeling city either of us have ever visited. I took BJ on a wild goose chase looking for an art gallery I had read about in one of the Visit Rochester magazines I found in our hotel room. After getting lost (repeatedly) in the skywalk, we finally made our way out to the street to orient ourselves. What should have been a 10 minute walk to the gallery turned into an hour adventure. But finally, we found the right street, and the gallery I wanted to visit. Of course, it was OUT OF BUSINESS! I made it up to BJ by letting him choose our lunch destination. He chose an amazing Thai restaurant that had the best Mojitos.
Bellies full, we made our way back to the hotel. BJ’s legs were really feeling the effects of all the walking so he decided to stay in the room and get some rest. Since he saw how safe the city was, he was fine with me heading out to explore a bit on my own.
I found a beautiful river walk path and spent the next hour taking pictures of the scenery.
Back at the room, we made a few phone calls t0 our son and the folks back at home, before heading out in search of some dinner. Since we were still pretty full from lunch, we decided on a light dinner of sandwiches. BJ was scheduled to have his MRI’s the next day, and he was already feeling anxious about the procedure. We decided to turn in early again so we could be well rested for the next day.
Day 4 (Thursday)
BJ’s MRIs were not scheduled until 2:00, so we had the morning and afternoon to ourselves. We decided to head to the Mayo building and grab a cheap breakfast in the cafeteria. After a surprisingly good meal, we wandered down to a sitting area where the ceiling was a glass dome.
We then made our way to the Mayo Clinic museum, where we marveled at the history (and famous past patients) of the clinic.
With about an hour to spare before the MRIs, we decided to relax at one of the Mayo Clinic outdoor areas, where we wasted time checking facebook, and emails.
Before we knew it, it was 1:30, and time to check-in for the MRIs at the Charlton Building.
After filling out the necessary forms, we were asked the standard MRI questions like, have you ever gotten metal in your eye or shrapnel in your body. Satisfied with our answers, we were given fancy blue robes and directed to change out of our street clothes.
I have gone in with BJ for all of his past MRIs and I have never had to change clothes before. Personally, I think I rocked the look.
BJ was scheduled for a total of 12 MRI images of his brain and spine. I was given earplugs and a blanket, and a chair close to the machine. BJ said my being there helped with his anxiety, so for the next 3 hours, I rubbed his leg and foot, trying to give him whatever comfort I could.
Because a side effect of BJ’s illness was tremors, he had to do a few of the scans over because the movement made the images unclear. But finally, around 6:00 pm, the scans were done, and we were changing back into our street clothes.
Exhausted, and with a sore back from being hunched over for so long, we opted for subs for dinner so we could eat back in the room. BJ put on some silly movie, and I again read the local paper. Tomorrow was our last day, and we were hopeful this trip would bring us answers.
Day 5 (Friday)
Our final appointment at Mayo Clinic ended where it had begun, with a return visit to Dr. Flanagan. Since our money was running low, we opted for the free hotel breakfast again. After eating, we packed up our room and checked out. Our appointment was for 11:00, and we hoped to be back on the road for home by early afternoon.
Our appointment with Dr. Flannagan confirmed what he had thought in the beginning. BJ was officially diagnosed with reoccurring/relapsing MS. His a-typical lesions made the diagnosis difficult, but the doctor was convinced based on the results of his latest MRI, a review of a previous spinal tap, and his symptoms.
How are you supposed to act when you find out the person you love has a chronic illness. A million thoughts went through my head. But in the end what I really felt was relief. After years of not knowing what we were up against, we finally had our answer.
Dr. Flanagan set us up with an appointment with an MS Specialist, and she went over BJ’s treatment options with us. There were injections, infusions and medications he could take to help minimize his relapses. Dr. Flanagan’s first recommendation for treatment was a relatively new drug called Ocrevus, which was an infusion once every 6 months.
Armed with brochures and pamphlets and books on MS and our treatment options, BJ and I said goodbye to the Mayo Clinic and started our long journey back to NY.
Our next job would be finding an MS doctor closer to home that could administer BJ’s treatments once we decided how to proceed. If we went with Ocrevus, we needed to find someone certified with administering the drug. Our local doctors back home were not an option. We decided to look for someone at the Guthrie Clinic just over the PA boarder. We liked the fact that Guthrie was affiliated with Mayo.
For now though, we would take the next 17 hours in our car digesting what we know knew, and counting our blessing that we were able to get that elusive diagnosis.
Curious about Ocrevus? You can find a link to this new drug HERE.
Has reading this latest entry left you thirsty? You can find a link to the delicious Citrus Collins HERE.