I was recently diagnosed with POTS/Dysautonomia in April of 2011.....my local cardiologist hasn't been able to help me, as my body hasn't responded to any of the meds he's put me on.....i am 19 years old, and this has realy effected my life in a very bad way. I pass out 3-6 times a day, with frequent seizures, cant hold food, and live in a "brain fog"...my cardiologist referred me to Vanderbilt, and I got an appointment for a week later with a cardiologist named Dr. Monahan....i know that i need to go to the autonomic clinic, but this is what God has provided me with, so Im going to travel 16 hours to see him....has anyone had expierences with him or Vanderbilt cardiology???
I'm sorry, I do not but I've heard good things about Vandy. I'm traveling 18.5 hrs 2 weeks from now to go to the Cleveland Clinic for auto testing with Dr. jaeger, a cardiologist. When I originally made the appt they did not schedule me for autonomic testing they had me scheduled for some other cardiac testin. So you may want to contact them to make sure they know you have a Dysautonomia diagnosis and that you are hoping to get autonomic testing. Sorry to hear what you are going through. Know you are not alone and you will get through this.
I would contact Vandy and make certain that everything you want gets scheduled for that trip as you're traveling so far. They are very heavily research-based. From my impression, you have to advocate heavily for yourself in order to get what you want out of a visit there because the autonomic lab is so heavily research focused and—for most patients, at least—the patient goal of getting a comprehensive evaluation may be at odds with the institution's research goals. That being said, BECAUSE they are (arguably?) THE hotbed of autonomic research in the US, that's a big reason to want to go there because these people REALLY know their stuff. My advice is to make a list of what tests you think you need and then call there and ask if you can get those scheduled. Also, if you want to consult with one of their cardiologists AND an autonomic neurologist (not an unreasonable request), you may want to ask about that as well. In my opinion, it's better to travel a long way to get a whole bunch crammed in than to be told you need to come back again soon for more consultations/tests!
We're just passing in the wind!! I just got back (two weeks ago) from seeing Dr. Jaeger (among others) and am going back Feb 22/23rd for more tests and appointments including repeating one of my old tests for Dr. Jaeger. We should have planned this better; we could have raced wheelchairs around or something. :-p (Let me know if you have any questions, even about stuff like parking or whatever. It's all fresh in my mind now. Even which set of elevators to take, and weird stuff like that, haha.)
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