Becia Posted February 10, 2014 Report Share Posted February 10, 2014 After the last month just being 31 flavors of wrong in my potsy world, I'm throwing caution to the wind, and researching everything and anything. On the wait list for Toledos clinic, the last hospital I was in has started the process of getting me into Cleveland Clinic, and now, it was mentioned to try Vanderbilts clinic in Tennessee.I printed out the paperwork for it, and will start filling that out and getting it ready, but who all here has gone, what was done, and how has this impacted your life? Im looking at the paperwork for the orthostatics and laughed... I can't stand for more than a minute, much less 5.So, yeah. Another clinic, but something's has to give. Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 10, 2014 Report Share Posted February 10, 2014 There have been some good posts on here from people who went to Vanderbilt in the past and spent a week there. If you do a search you should find some fairly lengthy threads on them. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 17, 2014 Report Share Posted February 17, 2014 I think they will solve the primary etiology of POTs eventually. Quote Link to comment Share on other sites More sharing options...
Becia Posted February 17, 2014 Author Report Share Posted February 17, 2014 I'm hoping to get my paperwork faxed in today or tomorrow. I emailed them last week when completing the orthostatics portion of the paperwork, and that led to a several hour discussion via email with them about what happens, how long it takes, etc. It was rather enlightening. I showed everything to my doctor as well, and he keeps thinking there's no way I DON'T get in, but I'm rather not up for counting my ducks before they hatch. All I know is these past two weeks, I have nothing to lose anymore, and it's frustrating to keep doing the same thing over and over.Just because I'm going to Cleveland Clinic on Tuesday, doesn't mean I'm not giving up on going here. I think both would be beneficial for me in different ways.If my freaky case of POTS (in the words of my doctor, lol) can help them, so be it. If they can help me, even better.And I'm an idiot, every time I search, I seemingly get nothing. But I'll keep trying, maybe I just haven't found it yet, lol. Quote Link to comment Share on other sites More sharing options...
looneymom Posted February 18, 2014 Report Share Posted February 18, 2014 Hang in there Becia. You are going to get some answers. Just keep us posted on what the doctors are telling you. I really think, it has to be something immune related going on in your case. If not, I will be really surprised. Try not to stress yourself out. Will you have someone with you on your visits? If not, start writing down your questions.If your Cleveland visit is today, I wish you the best.Rachel Quote Link to comment Share on other sites More sharing options...
dkd Posted February 18, 2014 Report Share Posted February 18, 2014 Here's the most recent Vandy thread:http://forums.dinet.org/index.php?/topic/24819-my-vanderbilt-medical-center-research-trip-5-days-for-pots/?hl=vanderbilt Quote Link to comment Share on other sites More sharing options...
Andrie Posted February 19, 2014 Report Share Posted February 19, 2014 Can you say more about whay found out via email? I'm hoping to get my paperwork faxed in today or tomorrow. I emailed them last week when completing the orthostatics portion of the paperwork, and that led to a several hour discussion via email with them about what happens, how long it takes, etc. It was rather enlightening. I showed everything to my doctor as well, and he keeps thinking there's no way I DON'T get in, but I'm rather not up for counting my ducks before they hatch. All I know is these past two weeks, I have nothing to lose anymore, and it's frustrating to keep doing the same thing over and over.Just because I'm going to Cleveland Clinic on Tuesday, doesn't mean I'm not giving up on going here. I think both would be beneficial for me in different ways.If my freaky case of POTS (in the words of my doctor, lol) can help them, so be it. If they can help me, even better.And I'm an idiot, every time I search, I seemingly get nothing. But I'll keep trying, maybe I just haven't found it yet, lol. Quote Link to comment Share on other sites More sharing options...
tachyfor50years Posted February 20, 2014 Report Share Posted February 20, 2014 I went there in October 2013 and had a negative experience. I was so upset and disappointed (If you search this forum, you will find some of my old posts). I insisted on having some of the tests so they did them in one day and I went back the next day to see the Dr. who was not helpful. Quote Link to comment Share on other sites More sharing options...
Becia Posted February 20, 2014 Author Report Share Posted February 20, 2014 My email convos were basically asking if they had an alternate way of completing the orthostatics, or if I should wing it. It then turned into a conversation about what happens when I do stand for more than ___ amount of time. They asked I type up what happens so the doctor can have that information as well when making their decisions.Given the testing I've read they do, and compared to what I'm about to go through at Cleveland Clinic, part of me thinks this may not be an option, because CC is thinking I may not have POTS based on the fact that my bp is now high (as compared to the low it was when I was diagnosed), but I do have the tachycardia that is seen with it. I keep thinking I know there's sub types, is it possible I fit one of those, and this clinic would help situate that, but if what I'm suffering from isn't this now, do I keep pursuing it? I know they do a vast amount of other autonomic research, and that's what we are trying to figure out now. Quote Link to comment Share on other sites More sharing options...
Gemma Posted March 21, 2014 Report Share Posted March 21, 2014 I did go just recently. You can PM me and I will tell you my story. Quote Link to comment Share on other sites More sharing options...
Andrie Posted March 21, 2014 Report Share Posted March 21, 2014 Keep in mind there are two separate programs at Vanderbilt. There is the research program, and then the autonomic clinic. Quote Link to comment Share on other sites More sharing options...
Becia Posted March 21, 2014 Author Report Share Posted March 21, 2014 I was applying for the research program, and I was denied (didn't meet their criteria apparently). I'm already seeing a autonomic clinic in Cleveland, so opted out of their clinic program due to distance. It's six hours to there from where I live, and only four for Cleveland, and those are hard enough. Quote Link to comment Share on other sites More sharing options...
E Soskis Posted March 21, 2014 Report Share Posted March 21, 2014 Ditto for me with "Tachyfor50years" - terrible experience - I cannot in good conscience recommend the place..... Quote Link to comment Share on other sites More sharing options...
tachyfor50years Posted March 22, 2014 Report Share Posted March 22, 2014 E Soskis, I tried to click on the (Like this) button under your post but it did not work, yes, what a waste of time, energy and money. Quote Link to comment Share on other sites More sharing options...
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