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!