What to expect at Mayo Clinic, Rochester

Posted by katemschultz @katemschultz, Aug 18, 2019

Hello! I'm scheduled for a visit to Mayo's Rochester campus at the end of the month.I'm curious as to what to expect at my appointment and after my appointment.

I've sent all of my records and imaging ahead of time. I'm bringing my own summary (via an app called Backpack. I have no financial or other interest in the company, but if you want a place to store your medical information that's easy to share and patient-controlled, I highly recommend it) as well as a letter from my doctor summarizing my condition.

A bit of background on my condition: I have classical Ehlers-Danlos syndrome, a connective tissue disorder. I injured my knee in 2013 (ruptured/torn patellar tendon) and I've spent the last 6 years trying to get it fixed. I've had 12 surgeries, a major post-op infection, two allografts, a bunch of hardware, injections, six or seven braces, crutches, a wheelchair, lots of pain, and tons of therapy. I currently have a knee cap that is WAY too high, a patellar tendon that is over twice as long as it should be, MCL and PCL laxity, a knee cap that has been drilled into more times than is probably safe, arthritis, meniscus that's been torn and repaired several times, and probably other things I don't know about. I've seen the top knee specialist in sports medicine/ortho surgeon in my area, and she's out of ideas (and she's asked around!), hence the visit to Mayo. The connective tissue disorder complicates things because my tissues stretch and my wounds can heal poorly. The past infection also complicates things as I've had two terrible, unidentifiable infections in that knee (one due to a fall on a treadmill and the other a post-op infection). They never made it in the joint, but they were hard to fight.

So, I'm coming in knowing what my condition is, what the problem is, how it's been treated in the past, my current treatments, etc. There aren't many mysteries other than what caused my previous infection, but it's not why I'm coming to Mayo.

I have lab work and imaging scheduled (which is the bulk of my time there) and then I'm supposed to be at my appt with the sports medicine/ortho doctor at 1:15 for a 1:30 appt. Then, I'm supposed to arrive at 1:45 for a 2:00 consult with infectious disease.

My first set of questions is: am I really only spending 15 minutes with the doctor I came to see? What is he hoping to accomplish in that first appointment? Is it more of a screening appointment than a treatment appointment? Is the appointment time so short because my case my not be very complex in his eyes? Will it just be him or will there be multiple doctors? How is a consult (with infectious disease) different than an evaluation (with sports med/ortho)?

My second set of questions is: what should I expect in terms of follow-up? Should I be planning on staying for three or four days? I know no one can know for sure, and since I'm rather close it wouldn't be too much of a hardship to come back, but it feels like they should say more about what to expect in their literature--though I imagine everyone's experience is different. I'm not sure what kind of follow-ups they would want, mostly because I don't know what to expect from the initial appt.

Lastly, any other tips, tricks, or recommendations? Good restaurants, things to do when you're not at the clinic, things to bring/not to bring, hotels to stay at or avoid, etc.

Thank you all and I hope you're as well as possible!

Kate

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

Colleen Young, Connect Director | @colleenyoung | Aug 19, 2019

Hi Kate, and welcome to Mayo Clinic Connect. You ask some amazing questions. Some of them, members of the community can offer their tips and experiences to help you prepare. For the specific questions about length of consultation, timing and follow-up, you may wish to call the the appointments office as the answers will be specific to you.

Let me connect you with other members and discussions that I think you'll find helpful. Ready? It's going to be a lot of links and info.
Connect with other members, like @lisafl @kariulrich @blossom2016, talking about Ehlers-Danlos syndrome here:
- Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS) https://connect.mayoclinic.org/discussion/chronic-erythema-nodosum/
- Possible Ehlers-Danlos Syndrome with craniocervical instability https://connect.mayoclinic.org/discussion/possible-ehlers-danlos-syndrome-with-craniocervical-instability/

@kariulrich is also a patient mentor at Mayo Clinic, Rochester. She may be able to answer more specific questions for you. @lisafl is a Mayo Florida patient.

To learn more about how first visits work, see these discussions:
- Tips for first dr visit and tests/appt schedules https://connect.mayoclinic.org/discussion/tips-for-first-dr-visit-and-testsappt-schedules/
- What happens following a Mayo appointment https://connect.mayoclinic.org/discussion/what-happens-following-a-mayo-appointment/
- Travelogue about a visit to the HCM Clinic at Mayo Clinic - Rochester https://connect.mayoclinic.org/discussion/travelogue-about-a-visit-to-the-hcm-clinic-at-mayo-clinic-rochester/
– How to get the most out of a visit? http://mayocl.in/2n5eXSH
– First visit to Mayo: Traveling alone http://mayocl.in/2hgasVG
– Getting your first appointment http://mayocl.in/2iNdgpc

In this discussion, members share tips about getting started with a new specialist.
- Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

Here are some practical suggestions:
- Suggestions for a stay at Mayo Rochester https://connect.mayoclinic.org/discussion/suggestions-for-a-stay-at-mayo-rochester/
- What are your accommodation recommendations when coming to Mayo? https://connect.mayoclinic.org/discussion/what-are-your-accommodation-recommendations-when-coming-to-mayo/
- What are your suggestions for a quiet place to relax between appts? https://connect.mayoclinic.org/discussion/what-are-your-suggestions-for-a-quiet-place-to-relax-between-appts/
- Where do you park when visiting the Rochester Mayo Clinic location? https://connect.mayoclinic.org/discussion/where-do-you-park-when-visiting-the-rochester-mayo-clinic-location/

Lastly (for now), I highly recommend contacting @jannaconciergeb or @lmindela at Mayo Clinic Concierge Services – it is a free service that you can use prior and during your visit to help you find services, such as accommodations, transportation and things to do. You can contact them by email, phone, chat or in person during business hours:

* Phone: 507-538-8438
* Live Chat: https://www.mayoclinic.org/patient-visitor-guide
* Email: concierge@mayo.edu
* Web form: https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

Keep the questions coming, Kate.

katemschultz | @katemschultz | Aug 22, 2019

In reply to @colleenyoung "Hi Kate, and welcome to Mayo Clinic Connect. You ask some amazing questions. Some of them,..." + (show)

Thank you so much for all of this help! It makes me feel a lot better having more knowledge about what to expect!

Chris, Volunteer Mentor | @auntieoakley | Aug 22, 2019

You can go anywhere from the clinic, my favorites are Victoria’s Italian, and the little Greek place in the same block or two as the clinic. But the true, true is there is pretty much anything you need downtown, and in many cases you can get there without going outside. Every Mayo employee will gladly direct you to what you need.

Rosemary, Volunteer Mentor | @rosemarya | Aug 23, 2019

@katemschultz, Hi Kate, I am really happy that Colleen has already shared some excellent resources with you about your upcoming appointment. I am a patient at Mayo and my experience is that the schedule of appointments is planned ao that the docotors will have all of the necessary information that they need to be best able to meet your needs. Sometimes they will want to re do tests from home in order to get more specific data, and sometimes they will be able to use from home data. By the time that you meet your doctor in the afternoon, he/she will already have the results from the morning tests. He/she will give you the amount of time that you need. If the time does run over into the next appointment, tthe they will notify the involved dept and let them know when you are on your way.
There is no way to know if you will go home that day, or need to come back for a follow-up. As you have said, we are all different.
There are volunteers everywhere to help you along the way. And Rochester is a very patient orientated community.

Have a safe trip. Take a list of questions along with your records. I hope for the best outcome for you❤