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Mayo Clinic in Rochester

Hi guys! I've just confirmed my first appointment at the Mayo Clinic in Rochester, MN. It's also my first time seeing a doctor other than my local GI, even though I've had Crohn's for 8 years. I just wanted to see if anyone had any advice or experience with the Mayo Clinic to share. Don't be shy! Any insight would be helpful, hotel suggestions would be helpful too!
 
I went to the Mayo Clinic in March of this year. I do have some tips for you. You want to stay as close to the Mayo Clinic as possible, so you can easily go back and forth for tests and appointments. The closest hotel is the Kahler Grand, which is right across the street and even connected to the Mayo Clinic by a skywalk. You never have to go outside if you don't want to. It was pretty nice, but you have to make sure you get one of the newly renovated rooms. Price-wise, you're looking at about $175-$200 per night. Worth it for the convenience. There is also some restaurants and some cool shops in the underground walkway that also connects the Kahler to Mayo.

About the Mayo Clinic itself...It works like a well-oiled machine. Everything is about efficiency and cost-effectiveness. You won't experience wait times like you do at normal hospitals or doctors' offices. Everything is scheduled to meet the individual needs and objectives for each patient, so you just get yourself a map and follow your schedule.

That being said, here is a tip that I wish I knew about earlier than my last day...Simple lab tests like blood work and urinalysis will show up on your schedule with an appointment time, but you can go any time you want. For example, it may say that you have blood work at 8:00 am, and then you have nothing else until 1:00 pm. So if you wanted to sleep in, you could go at 11:00. Just don't worry about being there promptly at the scheduled time, because it doesn't matter.

The biggest disappointment for me was my actual appointment with my GI doctor. I went to Rochester to see a top GI, and instead, the majority of my appointment was with a GI fellow. The real GI spent a total of 5 minutes with me. If I were you, I would make it clear that you want the real GI to take your medical history and hear everything first hand. After all, you are paying to see the best of the best.

Last but not least, if your appointment is with Dr. Jean C. Fox, RESCHEDULE!! She is terrible.

Good luck, and I hope this helps.

Brian
 
Thanks for the tips! What was so bad about the doctor? Not open to alternatives? They didn't tell me which doctor I'm seeing, will call tomorrow and find out. Were the GI fellows helpful or knowledgable at least? Do I need to tell them ahead of time that I need to see other specialists for renal and pulmonary issues as well, or will they just see about that when I get there? Thanks again for your help. I just want to make sure I'm going to get my money's worth...
 
Dr. Fox was unprofessional and she refused to schedule additional tests that my local doctor recommended. I was supposed to have a EGD/colonoscopy, but they were booked for a week. Instead of spending the money to fly home and back, I wanted to stay in Rochester for the week. I didn't have enough meds to make it through the week, so I asked her to write them for me. She refused. When I was back home, I asked to speak with her before flying back. When she called I questioned her because I didn't want to be labeled as IBS without exhaustive testing. She didn't want to hear any of it, and didn't like that I wasn't just going to blindly accept her testing/treatment plan. She got so mad that she actually hung up on me. So I asked for a new GI, but with the physician "buddy system", the new GI agreed with Dr. Fox. I never went back. I went to the Cleveland Clinic, and as I thought, Dr. Fox was wrong. They found colitis. So for me, the Mayo Clinic was $6,000 down the drain.

It doesn't have to be that way for you though. But you can't go into it blind, like I did. I'll try to help you out as much as I can.

First, when is your appointment? They should send you a schedule and a map in the mail at least a few weeks before your appointment. It probably won't say who you're seeing, so definitely call and find out. It's really important to have an idea of who your doctor will be.

Second, the GI fellows are knowledgeable, but mostly only in the interests of their supervising physician. My GI's interests were IBS and Motility, so the fellow was very centered on those two aspects of gastroenterology. Neither of them ever mentioned Crohn's or IBD. I also found the GI fellow to be very robotic. She was more concerned with meaningless specifics for her report than the total picture of what was really going on with me. Neither the GI nor the fellow had any bedside manner.

In terms of your renal and pulmonary care, it somewhat depends on your referral, unless you were able to get in on your own. If you were referred, it depends on what was written by the referring physician. If you got in on your own, it depends on what records you sent in. The normal practice at the Mayo Clinic is to assign each patient an internist, who then determines which specialists you need to see. You may be able to just explain when you get there, but you're much better off giving them a heads up about all of the issues that you need checked out. Also, if you haven't already, send all records pertaining to all the medical problems you would like addressed. Everything is computerized, so you don't have to worry about the records getting to specialists right now.

Most people think that because you have traveled all the way to Rochester, you will be able to get all of the appointments, tests, and procedures done while you are there. However, certain departments and certain tests or procedures do get booked up. In my case, they couldn't get me in for a colonoscopy for 10 days. That's why I said it is definitely better to have all of your records in their system long before you arrive for your appointment. Their scheduling system is pretty intuitive and high-tech, as it spans all departments and specialties. So if you have tests scheduled at gastroenterology, they can see it over in Nephrology and schedule their tests around the GI tests. But you have to give them enough time to make the schedule. If you have someone at Mayo that you have spoken with before, make sure you tell them EVERYTHING. That should help them to arrange a schedule based on the amount of time you will be there. Do that as soon as possible.

Sorry that this is so long, but I wanted to make sure you had all of the information that I didn't have when I went. Let me know if you find anything out, and don't hesitate to ask me any other questions you may have. Also, if you need a direct phone number to Gastroenterology, let me know. I can provide that to you as well.

Brian
 
Well I'm really glad you told me all this, I probably would have gone into it blind just like you. They advertise "Get all your care under one roof" and all this diagnostic prowess... I just assumed I could get everything taken care of in one visit.

My appointment is August 13. They originally wanted me to fly up 2 days after they first contacted me, and I probably should have gone because my condition is getting worse by the day, but that just wasn't possible for me with a young child.

My doctor didn't refer me to them. He said he's done all he can do for me at this point and referred me to a specialist in New Orleans to see about starting Tysabri. But I have no intention of getting those treatments. Ever. I've done all the 5-ASA's, biologics, steroids, and nothing works anymore. I'm at the point for alternatives (Stem Cell Transplant, or Helminths)... Or surgery. But before I go into further consideration of these alternatives, I need to be THOROUGHLY checked out. I have a persistant lung infection going on 6 years, persistant abscesses and fistulas going on 8 months (and 4 surgeries), and possibly renal issues now as well.

I did call them, she said my doctor is Karen Hanzel. And I'll be sure and call them again to make sure they will be able to fit all the diagnostics/procedures into a 5 day visit.

I also set up my online account through their website and filled out everything I could about my medical and family history, medications, surgeries, etc.. So that should help speed some things along. How long ago did you go there? I'm not sure they plan on sending anything in the mail. I asked them if they wanted me to send my medical records and labs ahead of me and they said to "hand carry" all my records, MRI CD's, and the actual biopsy slides from my last scope. I hope my doctor keeps the actual slides...

Thanks again for everything!
 
I have another question... I know the Cleveland Clinic is really good about diagnostics, and you obviously got better care there, but considering I already know what I have, and am just running out of treatment options... Do you think the Mayo Clinic is the best place to go? That's where my Aunt who is a Rheumatologist suggested. I'm so confused, and I just don't have the strength or energy to make decisions or do research anymore. It's exhausting!
 
I went in March of this year for 5 days. I went to the Cleveland Clinic in April. More on that later...

So like I thought, they are setting you up to see an internist, which is Dr. Hanzel's specialty. From there, she is going to coordinate your care and get you to the specialists that you need to see. So based on that, it probably wouldn't do any good to send your records, because you haven't even been assigned any specialists yet.

Here is the problem that I foresee arising...Like you, I went for more than one health problem. I saw gastroenterology and nephrology. My first appointment was with nephrology. After my appointment, my nephrologist made a schedule of tests for me to do throughout the week. I was then scheduled to see him on Friday before I left. I saw gastroenterology the next day. They also had a bunch of tests that they wanted me to do throughout the week. However, when the scheduler in gastroenterology went into the system to make my GI schedule, she wasn't able to fit a lot of the tests because the times conflicted with nephrology's schedule. So I had to make a choice. Since I was there mainly for my GI issues, I told them that GI tests take precedence over nephrology. So they ended up having to cancel most of nephrology's tests in order to fit in their own. The potential is definitely there for the same thing to happen to you. You will probably have to prioritize the issues that you find most important in your 5-day time frame, and let Dr. Hanzel know. Unfortunately, you may not be able to get everything checked out as thoroughly as you would like. Also, if they want to do an endoscopy/colonoscopy, you may find that they are backed up for those procedures.

I don't particularly like how they ask patients to hand carry their records. That means that they have to review them while they're in the room with you, which doesn't make for a very thorough review at all. They also never keep them. You'll take them back with you after your appointment. So your best bet is to make a short stack of the most important records for you doctor to review while you are in your appointment.

Both the Mayo Clinic and Cleveland Clinic are among the best in the world when it comes to treatment options. The Mayo Clinic has a more impersonal approach. Basically they just keep at it until they find the diagnosis or treatment that they are looking for. What they don't tell you is that many of their success stories are of people who came home after their first visit and then went back over and over again. It's really not a 5 day process like they make it out to be.

The Cleveland Clinic is more patient-focused. They tend to be more caring, patient, and open to different things. Both are on the cutting edge of medical research and treatment options. I do feel, however, that Cleveland is more open to using alternative methods. Personally, I would never go back to the Mayo Clinic, but I would go back to Cleveland. At Mayo, I felt less like a patient that mattered, and more like something on an assembly line. However, I can't really say whether or not it's the best place for you to go. You may have a wonderful experience. I think a lot depends on the doctors you have there, just like anywhere else.

Let me know if you have any other questions.

Brian
 
Thanks so much for all your help. I just got a call from the transplant/clinical study that I was hoping to get into and they said it looks like I'm a good candidate! And they have an amazing team of all sorts of specialists because they have to make sure everything is in good shape to do the treatment... So I'm going cancel the Mayo appointment. And later down the road if things get desperate again, I'll check out the Cleveland Clinic first, because I'm all about alternatives :)
Thanks a million!
 
I'm so glad to hear that everything worked out the way you hoped. I hope things work out for you in the clinical study. And I don't mean to completely dismiss the Mayo Clinic, because they have helped many people. I just had a better experience in Cleveland. If you do end up going to the Cleveland Clinic in the future, let me know. Take care, and good luck!

Brian
 
I also stayed at the Kahler Grand about 6 years ago when I went to the Mayo. I would definitely stay there again due to the proximity to Mayo. I was pleased with my GI there, who spent an hour or more talking with me. Sounds like I had a different GI than Brian had.
 
I just returned from Mayo in Rochester. This was my first visit there and I was VERY impressed. I saw Dr. Pardi who was wonderful. He spent ample time with me and answered all my questions and gave me great information on treatment. I had an upper scope done and then a follow up visit with Dr. Pardi to discuss the findings. We stayed at the Holiday Inn which was only a couple blocks from Mayo. We had a 10 minute walk from the hotel to Mayo and it was reasonably priced at about $135/night including parking. I had paid for breakfast each morning but I couldn't use my vouchers because of fasting for tests. The hotel gave me credit for the days I didn't use which I thought was very kind. Great experience.
 
Can I also add an alternative just in case?i was first diagnosed at the university of Chicago IBD clinic by dr russell Cohen. He is co chair of the gi department and is so amazing!he spent several hours with me and as a nurse and very proactive, I was no easy push over!but I think we all have learned to be proactive in our care! I'm returning to him next month for another thorough exam and my gi here is very supportive of this. I think everyone is right..so much depends upon the doctor that you choose. I chose to go to dr Cohen for his expertise and upon a recommendation by a gi doctor in dc that peace corps had originally had me see. I decided to go to Chicago because the attending gi at the university center here I saw was completely rude and told me I had no crohns at all. Without diagnosic tests,based only on labs which for me have always been normal no matter the actual level of inflammation.
And good for you for looking for alternative therapies!i constantly fight wih myself about the biologics which work for me but what will they do to me down the road?? I'd rather do anything but this toxic crap!! I have tried everything I know to try in alternative medicine like acupuncture,Ayurvedic medicine,and nutrition to name a few. At this point I'm just TIRED!!
 
Can I also add an alternative just in case?i was first diagnosed at the university of Chicago IBD clinic by dr russell Cohen. He is co chair of the gi department and is so amazing!he spent several hours with me and as a nurse and very proactive, I was no easy push over!but I think we all have learned to be proactive in our care! I'm returning to him next month for another thorough exam and my gi here is very supportive of this. I think everyone is right..so much depends upon the doctor that you choose. I chose to go to dr Cohen for his expertise and upon a recommendation by a gi doctor in dc that peace corps had originally had me see. I decided to go to Chicago because the attending gi at the university center here I saw was completely rude and told me I had no crohns at all. Without diagnosic tests,based only on labs which for me have always been normal no matter the actual level of inflammation.
And good for you for looking for alternative therapies!i constantly fight wih myself about the biologics which work for me but what will they do to me down the road?? I'd rather do anything but this toxic crap!! I have tried everything I know to try in alternative medicine like acupuncture,Ayurvedic medicine,and nutrition to name a few. At this point I'm just TIRED!!
 
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