Need advice Mayo clinic Jacksonville vs Mayo in Min.

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moedon1
Regular Member


Date Joined Jun 2005
Total Posts : 139
   Posted 4/28/2010 7:44 AM (GMT -7)   
I have been referred to Mayo in Jacksonville.  I'm wondering if there is a difference between the two other than location.  I would be seen for digestive, neuro and pulmonary.  I am getting advice from friends and the decision right now is split.  I live in MA so I would have to travel any way I just don't want to miss the opporetunity to get the best care.
Thanks!
Donna
 Formal diagnosis 3/2006, IBS 1992, Degenerative Arthritis Facet block and RFA, Seizure Disorder, Severe Carpal Tunnel both hands, SVT arrythmia, 2004 cardiac Ablation
Cushings Syndrome(thanks Prednisone), Asthma, Multiple Laps for ovarian adhesion to bowel, C/5 & 6 disc herniation - plate with screws, resistant to anethesia/most pain meds.  Chronic fungal infections.
Multitude of Meds. Have tried most Crohn's meds.  Gall bladder removal and Intestinal Lap. June 08.- Intestinal blockage July 08 moved on from on Humira..now on Cimzia. .Off the Cimzia 7/8/09.  Back on Humira.  Systemic fungal infection.  Waiting on Liver Biopsy & Hepatitis results.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/28/2010 8:17 AM (GMT -7)   
Mayo in Rodchester is suppose to be better for GI stuff
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 4/28/2010 8:29 AM (GMT -7)   
It was ranked #1 clinic in the US for digestive disorders a while back.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.
Resection December 2009

Amor fati - Nietzsche


DCS54B
New Member


Date Joined Apr 2010
Total Posts : 18
   Posted 4/28/2010 11:12 AM (GMT -7)   
I went to the Mayo Clinic in Rochester, MN for a week back in 2006 before I was diagnosed with Crohn's.  I saw Dr. William Faubion and I thought he was good.  I was really impressed with the way they handle things there - there are so many people in the waiting rooms at one time that you think you will wait forever but you don't, they get you in and out.  It is like a very well oiled machine that just keeps going - the staff were fantastic and everything was handled professionally. 
 
They did miss my diagnosis which I was a little surprised about - that said, the only way they were finally able to diagnose me back in Atlanta was through an exploratory surgery and that was even a bit questionable.  My diagnosis was finally made based on symptoms, response to meds, family history, multiple serologies and multiple abnormal CT scans, etc........I have never had abnormal or positive biopsy results and the Mayo (along with many other Docs) were reluctant to diagnose without the biopsies.  So, a lot of people questioned Mayo for not making the diagnosis - I would tell you that I still think they did a great job and I would recommend them. 
 
I would give you a few tips if you are planning on going there though:
 
1. There is a nice and reasonably priced hotel - The Grand Kahler Hotel / Grand Kahler Inn and Suites - they are attached to the actual Mayo via underground tunnels and it is very very convenient.  I don't recall them being any more expensive than any other local hotels - you might want to check them out.
 
2.  There are a lot of shops and restaurants in the underground tunnels as well - if your Crohn's is very active, there is a Robeks smoothie place which is fantastic (I had one during my pre-colonoscopy liquid diet).  I would also highly recommend the spa down in the tunnels for massage - they were FANTASTIC.
 
3. IF THEY SCHEDULE YOU FOR A COLONOSCOPY/ENDOSCOPY - make sure you address anesthesia ahead of time if you want it.  Their typical process is only to do it under twilight and they do not knock you out.  I am a person who has had many of these tests and I will not do them without being completely out.  They will arrange anesthesia but ONLY IF YOU REQUEST IT.  I found out the hard way and it was a big issue to have to reschedule and try to get anesthesia to work me in - just an FYI up front.
 
4. I would buy the trip insurance through your airline or travel site - I did and it was a lifesaver.  I think the travel insurance was like $12 or something like that and it allowed me to change flights / days, etc........without any real penalty or forfeiting my ticket.  Depending on how your tests go, they may keep you longer or shorter than originally planned - this makes sure you don't have a big travel headache.
 
5.  Make sure you have copies of all of your medical records, the actual films from your scans....not the reports but the physical films......they will want to read them there.  The more you take with you, the better.  They will return everything to you when you leave but you will need to turn your records in when you get there for your initial consultation.  You will see the Doctor on day one and have a consult - they will then order all the tests they want performed and you will work with a scheduler to get them set up.  You will run through the tests over the course of however many days you are there and then you will come back and meet with the Doctor again at the end of it where he will go over all the results, the diagnosis and the treatment plans.
 
I know this is a lot of info but hopefully it might be helpful for you.  Please let me know if you have any other questions or if I can provide you with anything else -
 
Good luck in your decision!
 
Deb

DCS 54B
 
Crohn's DX in 2006 but sick for well over a year before that. Currently just started on Humira, Pred - 40mg (hoping to taper off of this soon), Phenergan 25gm prn, Percocet, Pentasa 500mg, Protonix 40mg and Lomotil, prn. 
 
I live my life to the fullest, enjoy every day and am excited for the day when we will be able to say good-bye to CD and UC.  I am becoming active in my local CCFA chapter and have found them to be a wonderful resource!


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 4/28/2010 11:26 AM (GMT -7)   
Mayo, Rochester, is a 12 hour drive from us. I've been going to Mayo, Rochester, w/family, or for myself, for over 50 years. I was 16 when I made my first trip w/my aunt to help her drive. They are the EPITOME of efficiency as well as having the latest in diagnositc equipment, excellent doctors, wonderful staff ... etc, etc.
 
My symtoms began in mid 1975. The locals had NO idea of what was going on. I was Dx'd at Mayo in early 1976. Mayo, Rochester's, gastro department has been rated #1 in the nation for years now.
 
I see Dr William Tremaine in gastroenterology and Dr Jett in Pulmonary. My husband's neurologist is no longer there, more's the pity. He was great. If by any chance you are referred to their sleep center, e-mail or PM me.
 
Several of the Clinic floors have 'puter labs for patients w/internet access. You can stay at motels further from the Clinic somewhat cheaper w/excellent shuttle service geared to Clinic schedules. This last time I was at Mayo and stayed further out rather than at the Koehler Executive it was great and convenient - there were two of us w/quite different schedules and appointments and it stiill worked out great for us. The shuttle drivers were great and you get to know them and they get to know you.
 
Sadly, there are no longer low priced, locally owned, good food restaurants w/in easy walking distance of the Clinic anymore. They've all been bought out, forced out by the chains and outsiders. For years and years we just walked kitty corner across the street from the Clinic to the Colonial Inn Cafe for excellent food at very reasonable prices and staff that catered to every diet and testing dietary limitations w/excellent recommendations what you could and couldn't eat. Sadly it is gone. *sigh* There IS food available at the Clinic - but I found it pricey and not all that great. And BUSY!

Since you are in Massachusetts tho, keep in mind Mass General's gastro department has been rated in the top 5 in the country for quite a few years now. (Cleveland Clinic is rated # 2 and has been for several years). You can get a better idea of the ratings and how they are arrived at at the US News & World Report website.
 
 


My computer says I need to upgrade my brain to be compatible with its new software.

Post Edited (CrohnieToo) : 4/28/2010 12:45:45 PM (GMT-6)

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