Roselover Posted April 27, 2005 Report Share Posted April 27, 2005 Well, if you read my last post, you know my husband and I are looking into a trip from the West Coast to one of the specialty centers. From reading posts hear, it seems that Mayo, Cleveland Clinic and Vanderbilt University are the top three (exculding Dr. Grubb who dosen't seem to be taking new patients right now.)My question: How do they differ? What do you get from each one? How did it help you? If many of you would share your experiences I could assimilate and figure out which one might be best for me. (Plus, my husband wants to know if it was really worth it for the majority of people who have done this.)Thanks!Roselover Quote Link to comment Share on other sites More sharing options...
blackwolf Posted April 27, 2005 Report Share Posted April 27, 2005 i went to mayo in minnesota. though the testing was done well, i found myself exhausted from the fast pace and very poor follow up. i was kind of left hanging at the end with test results and a few suggestions. when things didn't work, i was also left hanging by my doc who couldn't get clear answers from mayo.just my two bits.blackwolf Quote Link to comment Share on other sites More sharing options...
Kite#7 Posted April 27, 2005 Report Share Posted April 27, 2005 Hello Rose, For ME the Cleveland clinic is closer however , the Mayo seemed to be theonly option. I am from Canada and was to pay for the services my self so I wanted to be sure. My GP ( who is the most fantastic family doc in the world) had successes in the past with other patients at the Mayo and believed with my "WIERD" goings on that it would be my only hope. He turned out to be right . it took 2 visits , 2weeks /time , spanning over 6months .Then they wanted to keep another 2weeks for further tests for further determination. But as the pocket book goes and the prognosis stays virtually the same my Wife and I decided it was time just to come home 'til it gets worse ( oxymoron). Plus we had people trying to take care of our 5 kids - talk about needing medical attention (haha). Anyway , that is why the Mayo for me . It is the world's Best. My Main Dr there is FANTASTIC. incredible communication, they didn't sugar coat anything and strove to find everything plus as turns more. I highly recommend The MAYO - its an E-ticket though cheers kite 7 Quote Link to comment Share on other sites More sharing options...
Ernie Posted April 27, 2005 Report Share Posted April 27, 2005 I went to Vanderbilt. I would exclude this one because the staff is bad and I never got any report. Went there for nothing. I was a guinea pig there and was treated worst than such!Ernie Quote Link to comment Share on other sites More sharing options...
morgan617 Posted April 27, 2005 Report Share Posted April 27, 2005 I was rejected at all three, so aren't I something special. I wouldn't waste my time on any of them, but then I am a bitter old woman! morgan Quote Link to comment Share on other sites More sharing options...
Laura Posted April 27, 2005 Report Share Posted April 27, 2005 Hey, I am sneaking in here off topic again (!) to ask a quick question.... hope no-one minds.... Kite, just wondering what part of Canada you are in... Do you just get treated by your family doc now? How is that going? I am in Alberta at the moment and seeing a cardiologist. Haven't seen any other doctors and was curious if it's worth checking out Mayo if you've already been diagnosed. Would there be any benefit? ( Oh, and what does E-ticket mean?) Sorry guys! (sneaking back out....) Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted April 27, 2005 Report Share Posted April 27, 2005 I love Dr Grubb and wish he were taking new patients.... I have been waiting on Mayo as so may others seem to be.... I dont know much about the cleveland clinic, although I did call them a while back and they seemed very nice.... Quote Link to comment Share on other sites More sharing options...
Kite#7 Posted April 27, 2005 Report Share Posted April 27, 2005 Laura, Presently , in Ontario but have purchased a home near Victoria BC and Me , my Wife & our 5 uber kids are moving in July. Better weather , newer home , nicer pace of life - OCEAN . My Doc here works in conjunction with my Doc at the Mayo. Basically , it is keeping abreast of change in symptoms and drug regimen. Really not much as far as treatment in the general sense, other than providing for lifestyle. I work very hard with my training program to address a pro-active (hate that phrase) treatment to my condition. I believe that training muscle , motor units , nerve response & cardio specifically helps put time back on the clock. My GP is very supportive and has studied hard at understanding my condition and its possible manifestations ; again the Mayo too is unbelievable an E-ticket - this is a major ride scary roller coster. My trips there they tested me upside down sideways backwards inside out AND again. It is extraordinary in the capacity to be thorough and humane at the same time. THE mayo for me , was and will continue to be by the looks of it, money well spent. Slainte` Kite 7 Quote Link to comment Share on other sites More sharing options...
Laura Posted April 27, 2005 Report Share Posted April 27, 2005 Roselover, Sounds like you are getting some pretty good info here. Thanks so much for posting this topic. I hope this helps you to make a good decision! I was wondering also about speciality centers like Mayo and Vanderbilt and whether it was really worth it. I am glad to have some information from both Ernie and Kite as it is nice to get a good perspective from others in Canada. Thank-you guys! Kite, what a great move! You are going from one beautiful province to another! I lived in Ontario and in B.C. and have family in Sydney, Saanichton, and Victoria. What a gorgeous area and lots of great things to do all year round! Your kids will LOVE it! Good luck and keep us posted on how things go! (Thanks for explaining the E-ticket! hee!hee!) Laura Quote Link to comment Share on other sites More sharing options...
SusieQ Posted April 27, 2005 Report Share Posted April 27, 2005 Like the rest of you, we looked into all 3 of those as well. Johns Hopkins was also highly recommended to us by many doctors- unfortunately we hit an insurance wall there.We got our peace of mind at the National Institute of Health in Bethesda, MD. While it is a major research hospital and the doctors aren't really "treating doctors" I was able to have testing done that showed exactly what was happening in every part of my body when i was having a POTS spell. When i went there, it was specifically to participate in a "propanalol study" however we found through the study that it did work for me, proven through passing a tilt table with flying colors. Dr. David Goldstein was my dr. there, assisted by Dr. El-Dadah- both of whom are wonderful. I can't go see him for check ups or regular visits but we do stay in contact with them via email when things get bad for suggestions. The problem we run into at home is that no doctor wants to treat me. There is so little known about POTS that my cardiologist sends me to a neurologist who sends me to an electro-physiologist- nobody wants to take responsibility!! POTS is very frustrating!!! Quote Link to comment Share on other sites More sharing options...
Ernie Posted April 27, 2005 Report Share Posted April 27, 2005 Hi,NIH is not studying POTS and NCS at the present moment. I was one of the lucky to go there but there is a waiting list of 55 patients and they are not calling anybody yet.My best bet is Cleveland or Mayo.Ernie Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted April 28, 2005 Report Share Posted April 28, 2005 Went to Mayo in Rochester, MN twice. Was put through extremely extensive and important diagnostic process. I owe the improvement in my quality of life to the outstanding testing and help I got from there. It is usually at least a two week stay in a local motel and tons and hours of testing and doctor visits and loads of questions and finally...answers!!I went with hope and questions and left with hope and answers. Having good local doctors to maintain us is a challenge.I can't speak of the other institutions since I have never been there.good wishes, tearose Quote Link to comment Share on other sites More sharing options...
Laura Posted April 28, 2005 Report Share Posted April 28, 2005 This is probably a really dumb question , but are there more than one Mayo clinics? Thanks... Laura Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted April 28, 2005 Report Share Posted April 28, 2005 Laura, There are 3 Mayo Clinics. All have different specialization's. There is one in Florida, one in Arizona, and the one in Minnesota.There is no such thing as a dumb question! Always ask your questions! You have the right to them! and to answers too!regards, tearose Quote Link to comment Share on other sites More sharing options...
steph37822 Posted April 28, 2005 Report Share Posted April 28, 2005 oops Quote Link to comment Share on other sites More sharing options...
Merrill Posted April 28, 2005 Report Share Posted April 28, 2005 Vanderbilt does do studies that you can apply to be in (people have talked about getting "rejected") -- but they also have an outpatient clinic and you can make an appointment and be seen that way. But there's scheduling something like 5 or 6 months in advance. Quote Link to comment Share on other sites More sharing options...
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