Vanderbilt Autonomic Dysfunction Center

I know I have seen posts about people going to or recommending Vanderbilt Hospital in Nashville for treatment of Autonomic Dysfunction.  I have finally been authorized to go there by the Atlanta VA Medical Center.  At first I was told I could see a non-VA neurologist but only in the state of Georgia.  My neurologist intervened and suggested Vanderbilt as 'the only program found that can perform this rare and specialized service."  I have been approved by the VA to go to Vanderbilt.  From the research I have done, Vanderbilt seems to be an excellent choice.  But I want to ask others on this forum what their opinion is.  Their Autonomic Dysfunction Center is about a 4 hour drive away, but the travel and, perhaps, lodging costs seem well worth the treatment I may be able to get.

Any opinions and comments are greatly appreciated.

As Always I appreciate your help.

[Heiferly]

Sorry Richard, I'm stuck back in bed today with my cell phone; this recovering from surgery stuff is a bit up and down. I need my computer to pull up the links to respond to this properly, but did want to let you know that I've read your post and will respond as soon as I'm able.

The ultra-abbreviated version of my response is that I do recommend going to Vandy, but when I get on my computer I'll have supporting info to back up my opinion.

Take care!
Heiferly.

[mtgardner]

I have not been to Vanderbilt so I cannot speak from first hand experience but it does have an excellent and long standing reputation in research and dx. of autonomic dysfunction.  I did research it when looking into where I might go for help.  I did get the idea that some people in the past were disappointed when they went there as part of research projects and didn't get the individualized attention they expected.  Others went primarily as patients (not research subjects) and were very satisfied with their tx.  I can tell by their present website that they may be aware people come there with varying expectations and are careful to differentiate research participation from regular appts.  

They are one of the top autonomic function labs and are well regarded.  The Cleveland Clinic and Mayo are some others.  I think most of us would like to find the closest ones to our homes and especially when travel and hotel costs are added into our expenses.  Whenever you read about dysautonomia research Vanderbilt doctors are mentioned and their research is often featured.

Hopefully someone else on the forum who has been there will post.  I think you have made a good decision and I am glad you are going to get help.  I am off to Mayo Phoenix this week-end myself.  I am hoping to find answers too. Finding doctors who specialize in autonomic dysfunction means we often have to go to them as few of us live near a center.

Let us know how things go and great on getting approval!  Marie

[mlb16]

I had a ablation done at Vanderbilt for Afib and the hospital,staff and doctors are great. I would not go anywhere else for my heart problem. I think that you would make a good decision to go to Vanderbilt.

[Richard1030]

Thanks for your responses and I apologize for taking so long to reply.  I got an email from Vanderbilt last week that they have received my fee services referral and passed it on to some one who should be getting back to me in a week or two to make arrangements for a clinical appt.  From what I was told a couple of weeks ago, they are booking for March and April right now.  Thanks for your help and support.

[Heiferly]

Richard,

I'm so sorry, I don't know where my head was.  I meant to get you the links to a few (old) threads from our community that I thought you might be interested in reading.  Because they're old and outdated, if you have any questions and comments about them, go ahead and post them here or start a new topic thread.  But I thought I would point them out because they do give information about getting autonomic testing.  Although it various somewhat from one to another of the full autonomic testing hospitals (Mayo, Vandy, etc.), there are many similarities and I thought you might like to have an idea of what to expect.

http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Cleveland-Clinic-Syncope-and-Autonomic-Disorders-Clinic/show/1004815

http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/New-info-from-Cleveland-Clinic/show/1363155

[buddysmom1]

I have an appt there at the end of March let me know when you are going then we can compare notes if I go before you I will let you know how it went. I just spoke with them yesterday about changing my appt and they said if I change my appt they are booking into june and july now so I hope you can get april or march. I know its like a 4-5 month wait we booked this appt some time in Nov, I did speak with the nurse who said the inital appt with the MD is only for one day but possibly depending on what they find since I am from far away they told me to plan on staying a couple more days after that for more tests? anyway let me know when you are going so if you go before me you can let me know what happens of visa versa

[Richard1030]

I just got my appt. in the mail, yesterday.  I have to go for tests on March 25 at 2pm and a doctor's appt on March 29 at 2pm.  I was sort of surprised to get such early appts., even though it is still a month and a half away.  This dysfunction is a pain in the neck, but at least I have an appt. to look forward to.

[buddysmom1]

Wow your lucky too get such an early appt so soon. I do have the testing and MD appt all in the same day which will help with costs hopefully I won't have to stay longer, I have an appt with a women MD I think her name is Danielle Chermack or something like that I don't have the name in front of me who are you going too see I don't know the doctors there so I guess it does not matter who I see as long as they can tell me what is wrong. I will let you know how my appt goes since you are after me and let you know if its worth it I hope I am not making a trip out there for nothing. Take care and are the;y giving you the standard tests the hand in ice and other things like that I am going to get the val salva test and couple of others but they are not invasive so I like that but I do have to stop my meds which I hate.