Vanderbilt Experiences?

[CallieAndToby]

So I have an upcoming appointment at Vanderbilt but I've already tried every treatment mentioned on their website and failed every one because the bad side effects outweighed any good. I'm also getting over a bad sinus infection and I'm just exhausted from not sleeping and running on adrenaline all the time. It would be a long drive and I've already had autonomic testing down twice and I've seen many dysautonomia specialists through out the years and the only medication that has stuck is a beta blocker and saline infusions help and IVIG which are unattainable atm. I'm dreading going through all the testing again, the tilt table test is difficult for me. It's very hard for me to recover from anything because of adrenaline and my bladder hurting (need to urinate) all of the time and OCD plus my parent has to work with a new job. I've waited a 1 1/2 years for this appointment but I'm not sure if the experience will be any different than all the others or if anything different will be offered or if they'll look outside the box? 

Addition: My neurologist wants to refer me out of state to Emory or John Hopkins neurology so that's something I have to take into consideration. 

[Pistol]

56 minutes ago, CallieAndToby22 said:

I've waited a 1 1/2 years for this appointment but I'm not sure if the experience will be any different than all the others or if anything different will be offered or if they'll look outside the box? 

You wont find out until you go.

[MikeO]

Callie i would keep the appointment if at all possible.

[CJ65]

I had a good experience at Vanderbilt with Dr Biaggioni and his NP Megane. I went to rule out baroreflex failure and Dr Biaggioni is one of the experts. Vanderbilt is one of the top places to go for dysautonomia so I would keep the visit. Since my appointment they have been great about answering questions. The only hiccup was I didn’t get clear instructions on holding meds for the autonomic testing. I did know from previous testing that I needed to hold but clearer instructions would have been beneficial. I’d jot down some questions beforehand and bring with you since it’s tough to think clearly when you’re off meds/stressed. I was also able to get visit notes soon after to bring back to my team in CA. Testing is tough but it can help us get clarity if you can power though. 

[CallieAndToby]

22 hours ago, CJ65 said:

I had a good experience at Vanderbilt with Dr Biaggioni and his NP Megane. I went to rule out baroreflex failure and Dr Biaggioni is one of the experts. Vanderbilt is one of the top places to go for dysautonomia so I would keep the visit. Since my appointment they have been great about answering questions. The only hiccup was I didn’t get clear instructions on holding meds for the autonomic testing. I did know from previous testing that I needed to hold but clearer instructions would have been beneficial. I’d jot down some questions beforehand and bring with you since it’s tough to think clearly when you’re off meds/stressed. I was also able to get visit notes soon after to bring back to my team in CA. Testing is tough but it can help us get clarity if you can power though. 

Thank you. 

[Guest KiminOrlando]

How did it go? Looks like. I may be headed back there. My dysautonomia doctor in SC retired.

[CallieAndToby]

On 2/15/2022 at 11:26 PM, KiminOrlando said:

How did it go? Looks like. I may be headed back there. My dysautonomia doctor in SC retired.

I was too sick to travel by the time my appointment arrived. It's quite the distance for me so I didn't make it. There is a really long wait time but hopefully you can get in, best of luck.