Vanderbilt-is it worth it?

[dkd]

Hi all,

My EP retired last year and I had to see a "regular" cardiologist in the group. My EP diagnosed me by tilt table with NCS in 2013. I have been on a beta blocker for about 10 yrs and midodrine just once in the morning.  I had been feeling okay, just tired a lot and having some pre-syncope episodes while driving (mostly while driving on the interstate). I am able to work. I just feel like crap a lot of the time when I'm there. A lot of my work is standing and it's a stressful job at times also (heart rate over 100 most of the time I'm working). But, I am able to work and am thankful for that because I know a lot of people here can't. So, my new cardiologist took me off the beta blocker and midodrine so I've been meds free for almost a year now. She thought the beta blocker was causing low blood pressure and causing my problems. I asked her about the pre-syncope while driving and she didn't have an answer so she referred me to Vanderbilt. I've been waiting almost a year for this appointment and I'm struggling with insurance to see if they are going to pay for the testing and Dr visit. 

So, my question is: has anyone been to Vanderbilt recently and has it really helped? I'm thinking they're just going to go through all of the stuff I already know: increase salt, increase fluids, wear compression, exercise. I just have a gut feeling that this is going to be a big waste of money and I'm still not going to be able to drive on the interstate

 

[MikeO]

41 minutes ago, dkd said:

Hi all,

My EP retired last year and I had to see a "regular" cardiologist in the group. My EP diagnosed me by tilt table with NCS in 2013. I have been on a beta blocker for about 10 yrs and midodrine just once in the morning.  I had been feeling okay, just tired a lot and having some pre-syncope episodes while driving (mostly while driving on the interstate). I am able to work. I just feel like crap a lot of the time when I'm there. A lot of my work is standing and it's a stressful job at times also (heart rate over 100 most of the time I'm working). But, I am able to work and am thankful for that because I know a lot of people here can't. So, my new cardiologist took me off the beta blocker and midodrine so I've been meds free for almost a year now. She thought the beta blocker was causing low blood pressure and causing my problems. I asked her about the pre-syncope while driving and she didn't have an answer so she referred me to Vanderbilt. I've been waiting almost a year for this appointment and I'm struggling with insurance to see if they are going to pay for the testing and Dr visit. 

So, my question is: has anyone been to Vanderbilt recently and has it really helped? I'm thinking they're just going to go through all of the stuff I already know: increase salt, increase fluids, wear compression, exercise. I just have a gut feeling that this is going to be a big waste of money and I'm still not going to be able to drive on the interstate

 

Yeah i get your concern. Can't say what vanderbilt has helped with but in my trek with ANS issues there is only so many options drug wise that is available and some off the radar things that may help. I have read many times that all Mayo does is to help with symptoms and my experience if all vandy is going to do is a test or two then tell you to squeeze your butt before standing and drink more fluid the trip may not be worth it. If they will help to get to the root of what bothers you then i would say yes it would be worth it.  

[dkd]

Thank you for sharing your opinion.  🙂

[Pattie]

On 5/1/2023 at 5:41 PM, dkd said:

Hi all,

My EP retired last year and I had to see a "regular" cardiologist in the group. My EP diagnosed me by tilt table with NCS in 2013. I have been on a beta blocker for about 10 yrs and midodrine just once in the morning.  I had been feeling okay, just tired a lot and having some pre-syncope episodes while driving (mostly while driving on the interstate). I am able to work. I just feel like crap a lot of the time when I'm there. A lot of my work is standing and it's a stressful job at times also (heart rate over 100 most of the time I'm working). But, I am able to work and am thankful for that because I know a lot of people here can't. So, my new cardiologist took me off the beta blocker and midodrine so I've been meds free for almost a year now. She thought the beta blocker was causing low blood pressure and causing my problems. I asked her about the pre-syncope while driving and she didn't have an answer so she referred me to Vanderbilt. I've been waiting almost a year for this appointment and I'm struggling with insurance to see if they are going to pay for the testing and Dr visit. 

So, my question is: has anyone been to Vanderbilt recently and has it really helped? I'm thinking they're just going to go through all of the stuff I already know: increase salt, increase fluids, wear compression, exercise. I just have a gut feeling that this is going to be a big waste of money and I'm still not going to be able to drive on the interstate

 

I, too, was having low blood pressure with my beta blocker prescribed by a cardiologist. When I went to an EP, he told me there is one beta blocker, Corlanor, that doesn't lower BP. The cost, even with insurance,

is very high. I have been getting it from a pharmacy in Canada at the EP's suggestion. I am much better now. You might want to discuss this with your doctor. It might be a solution for you.

[dkd]

Thanks! I'll ask about it🙂

[Fonda]

My specialist at Wake Forest in Winston-Salem has referred me to Vanderbilt. I am currently in the process. The Vandy office has been helpful in letting me know what happens at each step. The receptionist said I should expect a 6-12 month wait but that I will hear from them in the next 30 days. I am going to say it will be helpful to go to the next level as I have tapped out all of the experts in North Carolina.