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Mayo, Cleveland, or John Hopkins?

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Crohn's Disease
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Posted 11/23/2011 2:02 PM (GMT 0)
As many of you know I have been having a rough time of things this year. I am in the process of getting an expert second opinion from my insurance company. The process will take a couple of weeks. If they don't have any ideas as to where to take my treatment, then my doctor and I are in agreement that it is time to go to one of the major IBD clinics. When I was talking to my nurse coordinator at my insurance co. she threw out John Hopkins as another option in addition to Mayo and Cleveland. I had not even thought of them. I like the idea because it is the only one of the three hospitals where I would be able to have any family support since my daughter lives just outside Baltimore, but that isn't more important to me than finding the best place to go for treatment or the place that can see me quickest.

Does anyone have any thoughts on these 3 comparatively, especially in the motility departments and how quickly appointments are scheduled.
Posted 11/23/2011 2:27 PM (GMT 0)
I am on the west coast so unfortunately I have no recommendations for you. I will say I am jealous though that you have the opportunity to go to any one of those. I hope whereever you go, you finally get the answers to whats going on with you. Hugs!
Posted 11/23/2011 4:06 PM (GMT 0)
My doctor talked to me several times about the Mayo clinic, I still don't wanna go down that road. For
you however, I would choose the one that's closest to you. I've heard good things about all! Has your
doctor told you to expect to be there for a week?
Posted 11/23/2011 4:25 PM (GMT 0)
My former GI was recommending Cleveland for me as it is closer to where we live. Any or all of them are a good choice. But personally I'd try for Mayo first.
Posted 11/23/2011 8:16 PM (GMT 0)
My friend who has severe Crohn's had a bad experience at Cleveland Clinic....but that's just one individual experience. University of Chicago Hospital has a great reputation too. Good luck with your decision.
Posted 11/23/2011 9:10 PM (GMT 0)
I am a huge, huge fan of Mayo Clinic, Rochester, MN and have been going there w/family or for myself for 50 years. I was Dx'd w/Crohn's there in 1976 and had my resection there in 1978.

Mayo, Rochester is a 12 hour drive one way for us. Cleveland Clinic is a 5-6 hour drive from us one way.

Making an appointment at CC was easy online in 2000 and the department I was asking for an appointment there had me scheduled w/an appointment just 7 days after I contacted them online. My guess tho is that appointment scheduling can vary from department to department

I would anticipate the same would hold true for Mayo, Rochester. Since I'm an established patient at Mayo, Rochester I can't necessarily compare my appointment scheduling w/someone needing an initial appointment. I can have an appointment there w/in a week of my calling. You can also schedule an appointment online w/Mayo.

Altho CC is closer I prefer Mayo. I'm sure a great part of that has to do w/my and my family's previous experiences there. However, I find Rochester, MN much friendlier than Cleveland.

Mayo is a big fish in a little pond. CC is a good size fish in a dang big pond. The neighborhood around CC isn't as nice as Rochester.

More reasonably priced motels w/in walking distance of Mayo and w/SUPERB free shuttle service to and from the Clinic.

And Mayo is the EPITOME of EFFICIENCY. They waste no time running your thru testing, etc. when you are from out of town.

I can't say anything about the efficiency of CC as my appointments there were all just consults and one office exam not in the gastro department.

There is a lot to be said for having relatives conveniently located to Johns Hopkins and JH has a great reputation as well. I'd be tempted to checkout JH's website. For several years I wasn't at all impressed w/Mayo's website but they've wised up and have a good site now. CC has had an excellent website for years.

I've heard and read good things about a Dr Lasner (sp?) at CC but I don't know if he is still there or not and don't remeember if he is a gastro or a colorectal.
Posted 11/23/2011 9:37 PM (GMT 0)
I've been going to Mayo for about 6 months now. I was referred for my initial GI assessment and it took maybe 4-6 weeks for me to get an appointment. They instructed me to plan on 5 days for the full assessment but I was able to get everything except a scope done in 2 days. The scope took longer to schedule, maybe 3 weeks, because I needed general anesthesia. I went back a month after the initial visit and met with the MD and then started on a clinical trial. Healthcare is what it is, but overall I've had a very good experience with them so far. Now if only the drug would start working. Good luck!
Posted 11/23/2011 9:39 PM (GMT 0)
I just had my "intake" consult for my second opinion over the phone with my doctor advocate. This process should take a few weeks and then I will have to make a decision. This doctor is suppose to be contacting me every week to discuss the progress of the second opinion, so if things aren't going anywhere, or not fast enough, I will just have to go ahead and make an appointment so that I have my ducks in a row.

Thank you everyone for your input, especially C2. Back over the summer I had called CC and they said I could get an appointment in 3 weeks. I will have to look into how fast Mayo is. I like the sound of a shuttle, since I won't have any family with me and I will want to have everything set up back to back so that I can get things done ASAP. Sounds like they really have their act together.
Posted 11/23/2011 10:31 PM (GMT 0)
Mayo is a GREAT choice for what points are important to you, Zanne. And I would recommend Econo-Lodge out by the fairgrounds. Shuttle service is great, one of the few still family operated motels in town, a Perkins restuarant just down the road - or next door, I forget! Duh.

Its clean, neat, rates are reasonable. For most of your meals I would recommend eating at the hospital cafeteria in the Eisenberg bldg (Methodist Hospital), the best food for the price closest to the Clinic itself. The Econo-Lodge has 'puter use free in lobby or hookup in room. Breakfast is free: waffles, pancakes, hard boiled eggs, cereals, rolls .... I forget what all, fruit juices, coffee and tea, of course.

As I said, Mayo is the EPITOME of EFFICIENCY. Well before computers one of the Mayo doctors is the developer of the .... I forget what you call it now, the tubes moving items by air from office to office and floor to floor. IBM is a major business in Rochester and works closely w/Mayo.

Pneumatic tube system???

Most all the staff right down to the janitors are friendly and helpful.
Posted 11/23/2011 11:15 PM (GMT 0)
I forgot too - when I returned to Mayo in 1978 I had been hospitalized on IVs and NG tube locally for 6 weeks. The surgeon was one of THOSE types who will tell you anything to get you to do what they want you to do and tried to tell me that my Crohn's was all up and down my small intestine, he couldn't say how drastic the surgery would be, etc., etc. I had gone in the hospital on an emergency admission for full blockage and perforation. It was only my refusal of surgery that kept me in there 6 weeks. I discharged myself and flew to Mayo, went to St Mary's ER at Mayo, was seen by the Mayo docs and had my resection of 18" of mid-ileum the next day.

Mayo was right up front w/me: I had a 60/40 % change of the Crohn's recurring, they expected they would only need to remove 12" to 18" of the mid-ileum, so far as they could tell from all films and tests the Crohn's was still confined to the one area originally Dx'd ....

It was an EASY surgery. I knew nothing from the moment they put me under until the day after the day after surgery. The surgeon called my husband long distance after the surgery and the next night as well to keep him informed. And he stood by while I placed the call to my husband the next night to be sure that I did call and reach him before leaving my room.

What more could you ask for? The "pink ladies" would do any shopping for me whilst I was hospitalized, including running across the street to the yarn shop to get me more embroidery thread as I was doing some crewel embroidery to pass the time when I wasn't walking the hallway or sleeping.
Posted 11/23/2011 11:20 PM (GMT 0)
Another thing, the volunteers at the Clinic have a paperback book library where you can borrow and even exchange paperbacks to read!! No need to buy any reading material. I take some paperbacks w/me when I go to Mayo and as I finish them I give them to the volunteers for the next guy. If I run out of reading material I borrow some from them.
Posted 11/24/2011 1:05 AM (GMT 0)
Guess I'll chime in for one more positive comment about Mayo but I went to the one in Jacksonville, Florida. I was able to get in quickly and finally get something done. They tried meds for 2 years but I had to go for surgery last year since I wasn't getting any better and they felt that surgery was the best option for me at the time. The doc was great and so was the hospital and yes, they are efficient!
Posted 11/24/2011 2:41 AM (GMT 0)
I live in Canada and Mayo did not think they could do anything for me. I sent all my records there and got nothing from them. I was very disappointed. I hope you have better luck.
Posted 11/24/2011 3:53 AM (GMT 0)
all i can say is my initial GI when i was diagnosed years ago was at Hopkins- no help to you...Now I'm at Mayo in AZ. I like my doc, but I HATE their system- lines, huge waiting rooms, can't call and talk to doc- only leave msg for his nurse...hard to get an appt. sometimes if you really need one- they're nice enough just super packed in. a lot of times if i call in to make an appt cause i'm feeling crappy the nurse will call back and tell me to bump my pred or something...overall i'd give mayo about a 7.5 out of 10. I'll let you know if that changes if/when i need surgery my doc keeps more than hinting at...happy thanksgiving!
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