How Many Days Of Testing At Mayo?

[baja170]

I just found out I have an appt at Mayo, Rochester with Dr. Robert Fealey. Has anyone else seen him? I'm just thrilled I finally got in.

I have read many of your posts about Mayo, but couldn't find out how many days you were there for all the testing. I'm coming up from Florida, and my parents are taking me. I know everyone's situation is different, but I just thought I'd get a general idea.

Thanks!

Karen

[lmbutare]

I was there for 15 days (10 or 11 of which were testing days but they are closed on weekends) because I had to go to so many departments for diagnosis. I haven't seen Dr. Fealey but I saw Dr. Low and he is actually who diagnosed me with POTS. I think it will really depend on how many specialists you need to see for your problems as to how long you will be there.

Mayo is a really great place...amazingly efficient. All of the doctors communicate and know what you've had done so it's not like usual where you have to start your story over with every specialist you see. My only negative comment is that if you have any pain issues they will try to get you to go into their comprehensive pain program, but I've heard that it's kind of a waste of time. Oh, and make sure if you have mobility problems that you get a wheelchair b/c departments can be far apart and it was essential for me.

Good luck! I had a really positive experience there and I think that the doctors were great and really cared about what was wrong with you. They also seemed to be able to spend as much time with you as needed without rushing. I can't really say that I got a lot of treatment help, but they are really good with diagnosis if that's mainly what you're hoping for. I hope you have a good experience and get some help!

Lauren

[baja170]

Thanks for your reply Lauren. I'm glad to hear they took good care of you. Your information will be very helpful going into this thing.

[mngirl]

I saw Dr Fealey...he was the one that diagnosed my POTS...He diagnosed it for me while I was in the hospital for another medical problem and then the POTS really hit, so they ambulanced me to Mayo. I saw his resident more than I saw him while in the hospital. But I did have a follow-up appointment with him about 6 weeks later. I honestly have to say that I haven't been back since. And this is why...We went into the appt with 3 pages of questions about POTS. When we tried to ask, what I felt were VERY valid questions, he made it seem like they were dumb things to be asking. He truly made me feel like I was ignorant, which I was about POTS. My meds still needed to be adjusted and he told me that I would have to live the way I was...things would work out. He recommends Pedialyte, not Gaterade...he says that Gatorade is just a bunch of sugar...you need the sodium and some other things in Pedialyte. He also prescribed me compression stockings that didn't help me enough either. He also told me to start exercising, even though I could barely stand up. It was like he thought I was faking not being able to stand. I left there knowing I wouldn't ever see him again. He sent me back to my home with the instructions to go to physical therapy for 6 weeks and then get back to living. I did go home and things were not getting any better...so I started seeing my Internal Medicine doctor who has been AWRSOME. Even though he didn't know much about POTS, he has put in TONS and I mean TONS of time researching all this. He has even gone so far as to call a dozen other doctors to see what we can do about treatment. We have adjusted my meds constantly but my body finds away around them...then we tweak it again.

I sure hope that your experience will be much better...and maybe we just caught him on a bad day. I just think that the man is so smart that he can't come down to the patients level and be caring enough to make you feel and understand what this disease is all about. Let me know how your appointment goes. If you have a good experience, maybe I will give him a try again with a follow-up appointment. But I truly LOVE my current doc. Without him I would be in the loony bin.

Good Luck!

Lisa

[Miriam Poorman-Knox]

When I went for 2 weeks and didn't have any of my questions answered, I faxed them to Dr. Low. He called me and we went question---question till I was comfortable and had all my questions answered. Miriam

[Jan]

When I went I started on a Monday in Internal Medicine and that doc set up tests that lasted all week and I was to see him on Friday for the summary.

Well, on days I wasn't too booked, I went to the places I had the tests that were scheduled for Thursday and got on their cancellation list and sat, for maybe an hour or less, got in and got the tests done ahead of time. So.....I went for the summary on Thursday and was done. (Friday was Xmas eve so I was motivated).

Any test you are scheduled for, you can go to that place and get on a wait list and most likely will get in. That can cut your time down, especially if they have one day when you only have one test. They won't guarentee you will get in by being on their waiting list, but everyone I talked to got in when they went to a place and waited.

In case you are unfamiliar with the Mayo, it is a series of building including St. Mary's hospital and the tests you get ordered may be anywhere. I sometimes felt like I was running to catch a plane in a large airport. OR better yet, it was like that nightmare where you are late for your final test and can't find the room it is in.

Maybe you could call Dr. Fealey's assistant and ask for an estimate. I am not sure if they do more tests if you go right to the autonomic clinic or less. I did have the autonomic tests, but lots of others, heart, stress, lab work etc. I think everyone who goes to the Mayo for anything gets a chest Xray.

Just a funny note. The first day I saw all these people carrying these plastic bags around and I was thinking they must have some nice gift shops for everyone to have bought something. Then I went to the lab and they handed me a jug in one of those nice bags, and it was for a 24 hour urine test. Silly me.