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Crohn's Disease
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Posted 8/7/2009 7:44 PM (GMT 0)
I'm looking for some insight into the Mayo Clinic.  From what I've read online, they seem to be a good resource for people with Crohn's Disease.  My husband has Crohn's and we think we want to get a second (well actually, fourth) opinion.  Only problem is, the closest Mayo Clinic is in Jacksonville and would be about a 4 hour drive for us.  We'd be able to make it into a little mini-vacation, but I wanted to know from people who have experience going there, is it worth it?  Or should we just find another doctor locally?  I have no problem making the trip, I just don't want to be disappointed if they won't be able to do anything more than what the doctors locally would do. 

Any advice is appriciated. 

Thanks :) 

Posted 8/7/2009 8:24 PM (GMT 0)
I have no personal experience with Mayo, but I know that Mayo in Rochester Minnesota has Dr. William Sandborn on their GI staff and he is generally regarded as one of the two or three top Crohns specialists in the country, involved in all the cutting edge clinical research. Mayo's overall reputation is stellar . . . they are always rated as one of the top few medical clinics in just about every specialty, so I can't see how you could go wrong. The kicker is that they tend to specialize in difficult and challening cases in every disease area, and the truth is that a good experienced GI just abuot anywhere can treat a standard case of Crohns competently. It is really up to you whether the extra time and expense is worth what could be no real major return if you are happy with the care he is getting now. The sad fact is that in many many cases of Crohns there is not much even the best GI can do to make things apprecialbly better than your hometown GI can. Crohns is still an incurable chronic disease wherever you go.

Posted 8/8/2009 5:21 PM (GMT 0)
Yeah, I was a little worried that my expectations were going to be too high. I know Mayo Clinic won't be a miricle cure. He'll still be sick and he'll always have Crohn's. I just hate seeing him in pain and if a 4 hour drive will help alliviate some of that, then I guess it couldn't hurt to try.

tsitodawg, my husband and I are also worried about some of the side effects of these strong medicines. Right now he isn't on a biological, but only because he's still healing a wound from his surgery. As soon as he gets the all clear from his doctor, he'll be on Humira. We even specifically asked his current GI about affects on his fertility (we had considered freezing some sperm) but he said there was no need as it wouldn't affect him in that way at all. Now I'm a little worried. That's something we'lll definitely have to research some more.
Posted 8/8/2009 5:56 PM (GMT 0)
I went to Mayo in Minn. It was the best experience I have had. They sure have their stuff together! You are in and out, no time wasted but time well spent with every patient. Once you go there you can have your ct scans or xrays sent to them and they will read them. I felt so thankful to be able to go to someplace with such knowledge. No second guessing there! If anyone has a chance to go there I would do it. It will give you peace of mind.

Amy
Posted 8/9/2009 3:28 AM (GMT 0)
i personally go to the mayo clinic in rochester it is the only clinic i'll go to in regards of my crohn's they were the ones to diagnose me right off the bat they listen to what you have to say and understand whats going on. i went to a clinic in st cloud and they completely disregarded everything i had to say (even when i came to the er with a partial bowel obstruction they passed me off assuming i was there for drugs). i think trying out the mayo clinic would be a great idea they really know what they are doing since everyone specializes.
Posted 8/9/2009 5:11 AM (GMT 0)
I can't speak for Mayo Clinic Scottsdale or Jacksonville, but, I was Dx'd at Mayo Clinic Rochester in 1976, I had my resection there in 1978, when my 20 year remission ended in 1998 my Crohn's return was Dx'd there in 1999. Despite it being a 12 hour drive for us my family and I have been going to Mayo Clinic since 1958. Mayo is the epitome of efficiency. Mayo doctors care and they take the time necessary w/you. They will work w/your local doctors. Whenever we are in doubt about our local health care we are off to Mayo Rochester.
Posted 8/9/2009 3:18 PM (GMT 0)
Sounds like lots of people have had a good experience with the Mayo Clinic. And it sounds like they'll work with your local doctors too. I think its definitely worth at least one trip out there to see how it goes.

Thanks :)
Posted 8/10/2009 5:08 AM (GMT 0)
Not sure about the FL Mayo clinic but the Mayo Clinic is Rochester is one of the top programs in the country, along with the University of Chicago, Johns Hopkis, Sinaii in New York. I personally go to Dr. David Rubin at the University of Chicago and LOVE him! He answers questions that are posted on the following website:

http://messageboards.ivillage.com/iv-bhgendigesti/

Why not ask him about the FL Mayo Clinic since he is a leader in the field?
Posted 8/10/2009 12:31 PM (GMT 0)
The difference between the regular GI and places like the Mayo Clinic in Rochester has is the exposure to clinical trials. For example there is a new drug that has enter phase three by Takeda that is similar to Tysabri but does not have the brain lesion side effect. I forgot the name of the drug but if you type in Crohn's and Takeda in google you should get the name. Anyway this drug is still 1-2 years away from hitting the market. But I do know many people who have been successful on Tysabri. I think the people who have had brain leasons has been very small like under ten. Not sure but haven't the people who have had brain lesions had MS not Crohn's? And since MS is a nerve disease many are wondering if that is the link that makes them have a higher chance to the brain lesions. Chances of having horrible side effects from steriods is much much higher and we use that with out batting an eye!
Posted 8/13/2009 4:17 AM (GMT 0)

I would love to go - but question to those who have been:

How were you able to afford it? When I contacted them, they wanted $30,000.00 (thirty thousand!) upon arrival, and that was just for initial assessment. In depth testing, and any other addtional services would be 'extra'. The costs of any possible surgeries was not even discussed. I knew it couldn't be super cheap, but geez, it is non-profit after all. 

I'd have to take out another mortgage just to walk through the doors - am I the only one so surprised? For all of the folks who have been to Mayo, I've yet to read any comment about the costs. Surely not all their patients are rich. Or does everyone who goes have insurance that covers Mayo?

Posted 9/19/2009 2:57 AM (GMT 0)
I know this is a little late - but I don't get on here too often!  Just  wanted to write and say that my husband went to Mayo in Jacksonville last year in 2008.  It was a 4 hr. drive for us as well and we made the trip 3 times.  My husband has had Chron's for 12 years and we do like his GI but wanted to get a second opinion.  It was a great experience.  They are very efficient and spend a lot of time explaining everything to you.  In the end - they confirmed my husband's treatment plan.  I think they are used to seeing severe, difficult cases and my husband's seemed relatively minor to them - comparably speaking.

As far as the $ is concerned to a poster that asked - we have BCBS group insurance and it covered the majority of the expenses. 

Posted 9/19/2009 3:59 AM (GMT 0)

I've always had excellent health insurance coverage as far back as I can remember. I don't know how much longer that is going to last since we are now on Medicare and VEBA. *sigh* Its a scarey future!!!

Those idiots in Washington look like all they are going to do is make things worse!!! The President just might have made a mistake turning its development and writing up to the politicians in Congress!!! The idiots are proposing a TAX on durable medical equipment manufacturers - the ONLY medical industry or business to be taxed. As a way to pay for the health care plan they are developing. Gawd! Have any of you seen the prices on durable medical equipment??? Its as bad or worse than medication pricing!!!! But the DME manufacturers were the only medical "industry" that didn't lobby and bribe the pols.

Sorry. I got off topic.

Mayo has taken a terrible hit financially from the financial industry's problems and the budding health care competition from India. They just aren't able to continue many of the "subsidizing" assistance they provided to the uninsured and under insured that they have in the past. At the same time the chains and outsiders are buying up the town and driving up the cost of hotels, guest housing and dining. And robbing Rochester of its wonderful small town charm and hospitality.

But its still the best medical care in the US and cheaper than locally for the same procedures, etc. in our area and very much worth the 12 hour drive for us when we aren't satisfied or confident in our local care. And they are more than willing to work w/our local doctors! And they are the EPITOME of efficiency. They do NOT waste your time full well knowing you are from out of town and have travel and accomodation expenses in addition to the medical expenses. Once you have your initial consultation you are off on a whirlwind of tests and procedures, many the same day depending on how late in the day your initial consultation is.

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