Achilles2323 Posted May 22, 2013 Report Share Posted May 22, 2013 Go ahead and chime in and vote. Quote Link to comment Share on other sites More sharing options...
tachyfor50years Posted May 22, 2013 Report Share Posted May 22, 2013 I can't vote because I haven't been to any of them, but I really want to know 2 things about those clinics or centers:1) How long do they usually keep the POTS patient as an outpatient?2) Do they redo the tests that you already have done? like TTT?I am sorry, I don't mean to hijack your poll, but I see my 2 concerns related to those places. Thanks in advance. Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted May 22, 2013 Author Report Share Posted May 22, 2013 I know mayo keeps you for about a weekNot sure about the others And I heard they do repeat test the deem necessary Its fine we are all helping each other Just posting because I want to eventually get to the best 1 Quote Link to comment Share on other sites More sharing options...
clare Posted May 22, 2013 Report Share Posted May 22, 2013 I can't vote yet! I'm going to Vanderbilt for research but I'm really curious about Johns Hopkins because I live only an 1hour from them! I'll be looking forward to results. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted May 22, 2013 Report Share Posted May 22, 2013 My son did all of his initial testing at Case Western University Hospital in Cleveland. They were excellent and thorough, BUT the doctors who did all of his testing are no longer there so I don't know how that department works now. The doctors have relocated to Milwaukee, WI. I was much more impressed with the testing done at Case Western than I was when we went to the Mayo in MN two years later. Just my two cents. Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted May 22, 2013 Author Report Share Posted May 22, 2013 thats awesome i really hope Vanderbilt can help you.Please keep us updated on how it goes...yea john Hopkins isn't to far from me either thats why i ask Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted May 22, 2013 Report Share Posted May 22, 2013 I've been to none of them-- so I wont vote. Personally, I got really a really good diagnostic workup at Columbia Presbyterian in NYC. I have great follow up care with an EP cardiologist at the Univ of Penn hospital system in Philadelphia. He's more than happy to also connect with Dr. Grubb, who I saw for a 2nd opinion, confirmation of diagnosis and tweaking of meds for several years.Honestly, I don't think there's any such thing as "the best hospital" for this stuff--in my experience, each has their own strengths and weaknesses. For example, many members have complimented one hospital or another for their diagnostic workups and sorting out more complicated issues--but then complain that follow up care is nonexistent... or the opposite--the site doesn't do much in the way of diagnostic work, but is great with managing longer term care.Just my opinion having been around the medical block a few times. Ooof. I think I just called myself old. Quote Link to comment Share on other sites More sharing options...
E Soskis Posted May 22, 2013 Report Share Posted May 22, 2013 Well, I've been to one of the listed hospitals - very unimpressed. I think each person has their own individual experience as to whether the hospital is rated favorably or unfavorably. Personally, I'll stay with my hometown hospital because I have excellent rapport with my physicians. I respect them and they in turn, respect me. We problem solve as a team and even when things go awry, we're all in it together. I've been sent to several major institutions for opinions and work-ups and have been terribly disappointed with all of them. Quote Link to comment Share on other sites More sharing options...
tachyfor50years Posted May 22, 2013 Report Share Posted May 22, 2013 Achilles2323,Thank you for giving me the green light to yield to your poll!I am just like you, considering going to one of them, but none of them is close to where I live. Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted May 22, 2013 Author Report Share Posted May 22, 2013 Mighty your not old =) dont worry old is 90 and above e soskis which one were you unimpressed with ? just out of curiosity...i am sorry you had this happen and i hope you get the care you need from your hometown hospital.tachy no problem at all, we are all in this together Quote Link to comment Share on other sites More sharing options...
julieph85 Posted May 23, 2013 Report Share Posted May 23, 2013 I'm surprised Hopkins is on there. I live 10 minutes from them and they have done the least for me. Mayo was the best and Vanderbilt did nothing but confirm I have pots which I already knew Quote Link to comment Share on other sites More sharing options...
Rachel Posted May 23, 2013 Report Share Posted May 23, 2013 I have been to all 4 of these hospitals, and I had a good experience at all of them. I think it is impossible to say which one is better than the others. Every individual is different. I have heard of good and bad experiences at all of those hospitals. It depends on why you are going, what you hope to get out of it, the doctors and techs you have, if you are able to find answers, etc.I went to Johns Hopkins for POTS back in the 1990s. The doctor I saw back then is no longer at Johns Hopkins. I can't speak from experience about what it is like there currently. I've consistently heard great things about Dr. Rowe, but he is a pediatrician, so he only sees kids and teenagers.I went to Vanderbilt in 2008. I went as an outpatient, and it was a good experience. The testing and doctors appointment only took one day, which can be an advantage if you are low on energy.I have been to the Cleveland Clinic, but that was for mitochondrial disease, not for dysautonomia. I did have a good experience, though, for what it's worth.I have also been to Mayo. They are very thorough in their testing, and for some people this can be beneficial. My doctor told me, however, that they are only able to find a cause for autonomic dysfunction in about half of their patients. So even with all of that testing, you may walk away without learning anything regarding a root cause.Personally, I usually go to whichever hospital is the closest and accepts my insurance. I have moved around a lot over the last 15 years, which is why I have been to so many doctors and hospitals. I go to whichever one fits my needs and is closest to me at the time. Quote Link to comment Share on other sites More sharing options...
clare Posted May 23, 2013 Report Share Posted May 23, 2013 I have been thinking about both of those hospitals. I'm nervous that I'm going to make the trip to Vanderbilt and, like you, they won't be able to tell me more than I have POTS! Plus-I seem to have an autoimmune thing going on and it seems that people do the Mayo Clinic for that type of thing!?!? I live a lot closer to Johns Hopkins but until recently, I did not know they had much of anything for dysautonomia there. Do they do any studies? Can they do blood volume testing? Quote Link to comment Share on other sites More sharing options...
flatout Posted May 24, 2013 Report Share Posted May 24, 2013 I already did JH bc they are within 100 miles of me. I didn't find the help I needed there.Vanderbilt next on my list. Heard that the best doc from Cleveland Clinic is now part of Sentara Hopstial system and in Norfolk VA. Called and the wait now 14 months....argh. They jsut got up and running recently appartently. Quote Link to comment Share on other sites More sharing options...
Pirate Posted May 24, 2013 Report Share Posted May 24, 2013 Hopkins does not have a specialty program in dysautonomia for adults. Peter Rowe is at the children's center at the downtown campus, so there may be some services available for the pediatric population. Reportedly, nobody on the current neurology staff has a clinical interest in dysautonomia. That being said, it is a major teaching hospital with many staff changes (interns/residents/fellows graduating and moving into their own practices; new attendings joining staff). There may be an isolated doctor here and there that has some interest in the topic, but it would be a hit and miss situation to find them. It is certainly one of the best hospitals in the world, but like anything else, it has its strengths and unfortunately dysautonomia treatment is not one of them. FYI, I was diagnosed by a cardiologist (EP specialist) at Hopkins Bayview and was very happy with his managment of my situation. Quote Link to comment Share on other sites More sharing options...
Natops Posted May 25, 2013 Report Share Posted May 25, 2013 I was just at Hopkins Bayview Neuro a few days ago for a follow up. I don't think their neuros do much in the way of dysautonomia. On a plus note - my doctor there did give me an unscheduled skin biop that day because he was interested in my case and wanted to help me. It was very nice for him to just make that happen the way he did. Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted May 25, 2013 Report Share Posted May 25, 2013 I can't vote because I have not been to any of the facilities you have listed. I have been to Mayo, Scottsdale, AZ however and was very impressed. I will be returning for a follow up visit. Quote Link to comment Share on other sites More sharing options...
SnowDrifter Posted May 26, 2013 Report Share Posted May 26, 2013 My experience with was one of those places was less than spectacular. All they did is run a variety of fairly run of the mill tests - blood workup, balance, mri, etc and a tilt table. Sent me home saying I had pots. But the official report said I had anxiety.Frustrating since I don't fit the typical demographic. I'm a 19y/o male with no previous history or triggering events. And my symptoms started out of the blue - at the snap of a finger when I was sitting down. In the coming months several doctors have agreed that POTS is a symptom of whatever I have, not the cause(including the doctor I was assigned to). Quote Link to comment Share on other sites More sharing options...
corina Posted May 26, 2013 Report Share Posted May 26, 2013 Just to make sure you all know what can and can't be written regarding doctors and hospitals I've copied and pasted a part of the forum rules here for you. Please keep in mind that the rules were made to keep DINET from liability issues!Doctors and HospitalsYou agree to refrain from making disparaging remarks about hospitals or medical professionals on this forum and to refrain from naming doctors or hospitals when elaborating on negative experiences.Clarifications: It is fine to make a general statement, such as "I had a negative experience with Dr. ____ ," however, per forum rules, statements naming a particular doctor or hospital cannot be defamatory in nature.Defamatory: "1. Harmful and often (but not necessarily) untrue; tending to discredit or malign."You may elaborate on negative doctor or hospital visits as long as the particular doctor or hospital is not named, and therefore not defamed.Also I'd like to point out that this poll might not point you to the best hospital. It's not just about where the good doctors and facilities are, it's also about where members are located, whether they are able to travel and about finances. Quote Link to comment Share on other sites More sharing options...
SnowDrifter Posted May 27, 2013 Report Share Posted May 27, 2013 My apologies, Corina! I've edited my post. Quote Link to comment Share on other sites More sharing options...
corina Posted May 27, 2013 Report Share Posted May 27, 2013 Thanks SnowDrifter, very much appreciated Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.