trappedat20 Posted April 11, 2014 Report Share Posted April 11, 2014 I finally got my Vanderbilt referral. My appointment is February 5th 2015. It's really far away but from reading things on this site I knew I would have about a years wait. I have a few questions.1.) It says my referring provider opted out on autonomic testing prior to my consultation and so the autonomic specialist wants to order testing for me after my consultation. I know that means I wont get to discuss the results face to face with them but is someone at least going to call or write me or something telling me my test result afterwards? 2.) It says date: 02/05/15. Time: 2:30pm. Long: 60 minutes. Dept: PHCLIN. Prv/Rsc: Robertson, DA*. Visit type: consultation. What does PHCLIN mean? Does that mean my doctor is Robertson and does anyone know if he's good? I assumed everyone at Vanderbilt is good but please tell me if you have any experience with him?3.)There's a piece of paper that says the testing consists of the following : postural blood pressure and heart rate, deep breathing, and valsava. Please tell me that's not all that is going to be done? It says they will figure out what testing I need after my consultation so is this just a general piece of paper and if I need other tests they will have them done? I don't want to be seen as just a general patient. I'm waiting 10 months in the hope they look at my individual case and tell me what I need done.4.) Perhaps my biggest question is will they try to find out my primary cause? I'm unsure of whether or not they do that or not. As of the moment I suspect Mitochondrial Disease but will they test for that or do they just do autonomic testing? This is a very big question I have. I'm unsure about holding off on getting any real answers for 10 months so I don't want to be disappointing thinking they will try to find my primary cause and not have them try. So if anyone has any information on that please let me know.I'm a little unsure what to expect really. I don't know how extensive their testing is. I don't know if they are going to do 3-4 autonomic testing procedures and be like you have dysautonomia, or if they will run extensive testing trying to find out my particular case of dysautonomia and check for common underlying conditions for dysautonomia. Please share your experience. Thankyou. Quote Link to comment Share on other sites More sharing options...
gjensen Posted April 11, 2014 Report Share Posted April 11, 2014 I do not know anything about Vanderbilt, but congratulations on your referral. Quote Link to comment Share on other sites More sharing options...
trappedat20 Posted April 11, 2014 Author Report Share Posted April 11, 2014 @gjensen TY. It stinks it's so far away but I'm excited to finally have the referral. All but one of my doctors have dropped me so I'm excited to be around doctors who know what they are talking about. Quote Link to comment Share on other sites More sharing options...
looneymom Posted April 11, 2014 Report Share Posted April 11, 2014 Happy for you. This should provide some much needed answers. My son went to MAYO but I have heard that Vanderbelt is great for the adults. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted April 11, 2014 Report Share Posted April 11, 2014 I would email or call Vanderbilt directly and ask a nurse or something theses questions. I have done that with an appt my daughter has at another hospital. I got detailed email answers and instructions on all tests. This is the very least they should provide.June Quote Link to comment Share on other sites More sharing options...
trappedat20 Posted April 11, 2014 Author Report Share Posted April 11, 2014 @looneymom ty. I know, I feel so lucky that I live so close to it. It's funny that I moved here around the time I got sick. It's almost like I was suppose to move here.@JuneFlower I've felt very nervous about calling or emailing them because I feel like the they're so big and important or something. It sounds very silly when I write it down lol. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted April 11, 2014 Report Share Posted April 11, 2014 MakeMeErised-I understand that feeling but they are just people. They should understand your questions. And consider preparing a packets detailing this stuff for everyone.!June Quote Link to comment Share on other sites More sharing options...
trappedat20 Posted April 11, 2014 Author Report Share Posted April 11, 2014 @JuneFlower that's a good point. My main concern is I'm wondering if they search for the primary cause of the dysautonomia or not. I can't seem to find that anywhere Quote Link to comment Share on other sites More sharing options...
neubala Posted April 14, 2014 Report Share Posted April 14, 2014 The Autonomic clinic at Vandy is located in the Cardiology department. Robertson should be the doctor. When I had my initial appointment with Vandy I was sent a very large packet of paperwork to complete. At the appointment they did their general testing (I did mine the day of the appt before seeing my doctor) then after the doctor spoke to me he was able to decide if I needed anything in addition to what he already had. I am a little different than a normal patient here because I also work here and most of my medical records are here so the doctor didn't need much else from me. All test results will be call to you. Also once they see you, Vandy has a internet portal that you can sign up for so you can see the results yourself.Once you are in as a patient at the clinic it is a little easier to get in for any follow ups that you may need. Although it took me 4 months last time and I think I was an add on to the clinic. If you can go in as a research patient it works a little different because they will generally keep you for a week.If you have any questions you should call them. We are used to getting phone calls from the patients all the time. Depending on how busy they are you may have to leave a message but they will call you back. Quote Link to comment Share on other sites More sharing options...
trappedat20 Posted April 14, 2014 Author Report Share Posted April 14, 2014 @neubala oh wow thankyou. That was very informative. That sounds nice to be able to work there. Welcome to the site btw Do you know if they search for the primary cause of the dysautonomia and do testing to see what caused it? Quote Link to comment Share on other sites More sharing options...
corina Posted April 14, 2014 Report Share Posted April 14, 2014 Hi neubala, welcome to the forum! Quote Link to comment Share on other sites More sharing options...
neubala Posted April 17, 2014 Report Share Posted April 17, 2014 They do test for the specific type especially if they think it will help in the treatment. My doctor was able to narrow it down to 2 types just by my symptoms and he would have treated them the same way so we didn't test any further. I am tired of being poked so I did not go that route. Since my POTS doctor also knows my cardiologist since they used to work together I only see the POTS doctor when I have stumped the cardiologist. It is nice having everything in one place but I work with the cardiac surgeons and they just want to crack my chest and fix the problem. Typical surgeons. Quote Link to comment Share on other sites More sharing options...
trappedat20 Posted April 17, 2014 Author Report Share Posted April 17, 2014 Thankyou for all of the information! I'm glad to know they test for the specific type. Quote Link to comment Share on other sites More sharing options...
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