rochester MN–Mayo clinic
April 8, 2011 at 7:29 pm
I will be traveling half way across the country in june to go to the mayo clinic for a second opinion. I was interested in others experiences there, recommendations for inexpensive hotels nearb–, which offer transportation to mayo, since i will be flying and would prefer not to deal with car rental. Any info you may have on the area, the hospital, transportation etc…I will take all the pointers i can get. Thanks Lori
AnonymousApril 9, 2011 at 12:28 am
I was inpatient at St. Marys Hospital (doctors come from the Mayo Clinic,) back in 2002. Be prepared to be tested for everything under the sun, they are excellent at diagnosing, & ruling out every other possible disorder there is. I felt that they were rather conservative in regards to their treatment plans, had me on IVIG right away, but waited almost 2 months to add the solumedrol. My husband stayed at a cheap hotel called the RayMar, as he would walk over to the hospital every morning early & go back late at night.
April 9, 2011 at 8:07 pm
thanks pam— i will check into that hotel—it is within walking distance—like how close??? under a mile? did they keep you in the hospital while you were doing the testing or did you go back and forth from the hotel? I will be going alone so that my husband can stay back home with the kids, pets etc…are most of the tests etc they do things that i would be able to still get back and forth from my hotel —-nothing that requires down time? did you already have a diagnosis before going there? lots of ?’s– i know—just kind of nervous and excited at the same time about this trip. I thought listening to Drdycks podcast that he sounded more aggressive—at least more so than my current neuro. thats why i am excited to go—hoping he will give my neuro recommendations for a more aggressive plan to finally be able to be done with this crap!! Thank you again for your response : ) Lori
AnonymousApril 10, 2011 at 3:25 pm
First, the hospital (St. Mary’s, not Rochester Methodist) is about 10 blocks from where you will likely have all your appointments. Refer to-
Second, a really cheap place is here-[url]http://rochesterlodging.com/courtesyinn/index.htm[/url] $32.95 and up. But, I wouldn’t stay there!!
Thirdly, One place we stayed is Guest House International. currently quoting $64.95-
If I got the place right, they have somebody’s famous rib place attached to the building. Yes, they offered ‘free’ breakfast at the motel.
For stays of a week at a time, at least they charge for 7 days minimum, try Value Place-
Currently quoting $189 per week. Dishes and utensils are extra. Likely no new sheets or towels unless you ask for them. But, they do have a kitchenette. It is a little far from everything, yet it is still on a shuttle route to downtown.
Hope you can rent a car! You gotta go see the corn and soy bean fields, the Mississippi river and Mall of America up near the Twin Cities. Also, there’s a small outlet mall about 45 minutes drive to the west.
Maybe you’ll get to see a tornado! fun….
I did not have any downtime. oops- except for the upper arm nerve biopsy! I was there almost two weeks because I arrived mid-week and the nerve biopsy was not scheduled until the last minute late the 2nd week!
Well, I thought I might have downtime after my spinal tap. I had a terrible recovery from a 2006 spinal tap that left me flat on my back for days, if not weeks. However, since you are at Mayo, if you did need a blood patch I reckon you would get it right away.
My Mayo Clinic spinal tap was a no big deal event. Unremarkable. In, tap, out- finished.
You’ll be there and be all tested before you know it. Good luck.
AnonymousApril 18, 2011 at 11:06 pm
Lori, I absolutely LOVED Mayo Clinic. They were the first medical institution that was informed about CIDP. They were so organized and thorough. It was amazing. If I had gone there immediately when my symptoms began I wouldn’t be in the condition I am in today. I was going to Dr. Selwa in Ann Arbor, Michigan. She refused to do an EMG or Spinal tap and I trusted her and I ended up with permanent damage and cannot walk without assistance. I wish so badly I had went there when we first thought about it. But it was 15 hrs. away. I couldn’t fly as my symptoms got progressively worse after two two flights (six legs). Where are you traveling from? I stayed at a hotel that is connected to the hospital. I called the hospital and asked about hotels and got the phone number from them. Do you have an appointment. I went out there without one- but they got me in right away as a “checker”. May God Bless you. Please keep me informed.
April 19, 2011 at 5:27 pm
yes i have an appointment in june with dr dyck–I am anxious to go there -and sooo hope they can help with my cidp. i have an identified potassium channel antibody which ive been told is rare—my neurologist has said that if anybody has seen this before and knows what to do it will be the mayo—-so I am hopeful—–I would so much (like all of us) get back to doing the things i enjoy. Before i can really accept having this disease i feel i need to do all i can for it. The mayo are the ones who discovered the antibody–it wasnt until my blood was sent there that it was even detected. i will keep you updated—will be bringing my laptop with me–as i will probably be bored in minnesota. was the hotel attached to the hospital expensive? im going out by myself so convenience, transportation, etc is important. Lori
AnonymousApril 20, 2011 at 11:55 pm
I believe the room was $169.00 or $189.00. But it included parking and an inexpensive restaurant so it was actually a decent deal. It was so nice being able to go back to our room in between tests. What state are u from? One thing to remember though- there was a lot orf walking back and forth.
April 21, 2011 at 7:34 pm
this place looks huge and overwhelming—i hope it is worth the stress of planning and doing it all. according to my appointment letter–I am to be at the mayo bldg @ 7:30 am. So i will fly out the day before. this is a monday so im going to plan to stay a week–until fri.—does a week seem reasonable? To answer an earlier ?–I am coming out from Maine—-so yes nearly across the country for me. according to a brochure that came with my letter–most of the hotels offer complimentary shuttles to and from the mayo—–does this include all the buildings—because someone mentioned testing being done in other buildings??? It also stated taxi for trip to and from airport? just mentioning all this and if anyof you have more tips or things to help PLEASE post. I also read that some airlines offer discounts for mayo patients–anyone have success with that? thanks for your imput and help—Lori
AnonymousApril 22, 2011 at 12:22 am
Lori, one of my tests was in another building and my husband drove me to it. You could take a taxi if you don’t have a rental car. One week seems very generous. They were able to fit all my tests in four days. However, had it fallen on the weekend, it very well could have taken more. Good tip: You can always check in early for a test. Ask about an opening. I did some sitting and waiting but I got all of my tests completed much earlier than my schedule. Also, call Mayo Clinic and ask for the information desk. They were so helpful. I am going to have to try to fly again. It would be so much easier than driving. As it took us 15 hrs to get there.
April 22, 2011 at 9:10 am
thats a good tip about just going and waiting for tests–thank you. i will just bring several books to occupy time, because i may as well wait there with the chance to be taken earlier than wait in a hotel room. I would like for my husband to go –but he has work, and we have the kids, the dogs cats etc back home that need tending while im gone–its easier for me to get time off from work than for him. I will be very glad when this trip is over with and hope the mayo has good advice for my neurologist from all this. Did you just go to Mayo for a one time diagnosis? you mentioned flying next time is why i ask? my neurologist made it sound as though i wold go here for a secong opinion and see what they’re treatment recommendations were. that’s why im skeptical about this whole trip—i already have a diagnosis, which partly alrerady came from mayo-(-my labwork was sent there) unless shes thinking they will possibly change the diagnosis? which again seems odd because once you deterct an antibody in the blood that seems pretty sure to me??
I guess the best thing to come of this is they could suggest more aggressive treatment because my neurologist has not been aggressive to this point.——but to travel all that way to be able to get more aggressive treatment——just really hope irts worth it. Dont want to think im going ti go through all this so they can tell her to start getting more aggressive with the ivig—which is what i have been suggesting all along.
did any of you who have seen dr dyck discuss sct with him—what is his view on that? my appt isnt until june–and its amonday morning–so 1 week will give me 5 full days to get testing done. maybe i will be lucky and be done before then and te airline might let me adjust my ticket and fly back earlier. So i am just in the process of setting up flight, hotel and ground transportation once there. Lori
AnonymousApril 24, 2011 at 5:28 am
I just was there last week. I saw this nice Italian neurologist . She made me confident with the knowledge of cidp. I had 2 days of tests and will need to go back for 2 more days. One to see a Physician for physical T. and Dr. Saldorinis (sp) mentioned possible braces for my ankles. Than June 1st I ill go and see her for her thoughts on my case. Its important to note I live just 75 minutes away. Also she will be gone 10 days in there also. I could have another dr. give me the results but I feel its better to end with who you start with. They’re tests were more in depth I found. Good luck!;)
April 24, 2011 at 6:41 pm
as far as i know–i will be seeing one of the Dr. Dycks—im not sure which one, the father or son. At least thats what my neurologist from MA told me–she said she talked to Dr. Dyck and he agreed me see me???She mailed all of my paperwork, they reviewed it thern called me with an appt.—unless something changed since she spoke with him–i believe thats still whi im seeing. On the appt paperwork they only gave me the date and time and building—mayo no drs name was on it. I imagine since they are working at mayo—one of the top places in the country–they all must be good. From what everyone is posting, it sounds like they are very thorough—thats what i want. I was so afraid i would put all this money and effort to make the trip out there and they would just see me for a half hour and that would be it–but from what everyone has posted, it seems they are very good and it should be worth the trip out there. Lori
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