Dysautonomia (Autonomic Dysfunction) Community
Anyone gone to Vanderbilt?
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Anyone gone to Vanderbilt?

Has anyone gone to to Vanderbilt for evaluation and treatment?  I'm considering trying to get into the clinic or also may volunteer for the two week research program.  Can someone tell me about the research, what to expect, and especially the pros and cons of doing it?  

Thanks!

Laura
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Hi, Laura,
We've looked at the Vanderbilt website, mostly with consideration of their clinic, for my husband's mystery, very sudden onset 'autonomic insufficiency.' which is proving very slow to get tests done and get a diagnosis locally. Meanwhile, he is essentially housebound and our lives have been turned upside down.

But ... unsure of what is best path, plod along locally with what we think will be a good team? Or venture out, and hope to get all tests done and a diagnosis more quickly?

Just read your post from late March. Wondering, did you check into it, or even go? If so, what were your impressions or results?

If you see this, appreciate any updates. And hope you're feeling 'okay.' I'm learning, seeing my husband go through this, that that is an very changeable thing day to day.




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Hi Chames,

I haven't gone to Vanderbilt and hope to get on the waiting list soon. It is one of the top places. I need to finish my paperwork.  I get so behind on stuff, even things that are very important to me.  I haven't been able to find anyone good locally.

Hope your husband gets better sooner than later. Yes, every day is different with this illness.  That makes it quite challenging.

Good luck!

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I've been accepted into Vanderbilt in October and my cousin has already gone.  She said they were great, but be prepared to be one of many since the facility is so big.  I'll let you know how it goes, though my doctors here at UC Davis Medical Research have been pretty awesome so I'm not sure if It will even do me any good to go.  Good luck, they are supposed to be the best in the world.  Try Mayo Clinic in Jacksonville FL (they are doing another study) if Vanderbilt doesn't work out.
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Hi, Laurab,

Thanks much for your update. A waiting list -- of course. I see from WonderWoman3 (hello there!), it's a long waiting list.

Husband getting some very basic autonomic testing done locally this Friday. I don't know if it will be definitive as to what he's dealing with, or instead rule some things out, and just inch closer to a real diagnosis (meaning more tests). Maybe that outcome will guide our decision on next steps. Still getting a feel for local facility, their knowledge and depth. Better than some places, to be sure, but not the super experts either. Will have to see if what they have to offer is 'enough.'

I hear you on the getting behind with things. This octopus of autonomic dysfunction has taken over our lives, it's hard to keep up with even the most crucial. And if it's not a huge deal or an emergency, forget about it!

I hope it's a process of acclimation and I/we get better at it as time goes by.

Thanks again so much for your reply. Hope you had a good day.

Chames
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Hi there, I too have a wonderful husband who has been stricken suddenly by this awful autonomic dysfunction, probably dysautonomia.  We have been through the local channels and now have been referred to Vanderbilt for diagnosis and treatment.  We are awaiting their call to schedule our appointment.  Each day is a different issue and it is taking it's toll on him.  God is good and with all the prayers being lifted up for him, we are trusting we'll confirm a diagnosis and receive some treatment for the symptoms.  Many blessings to you and your husband.
gracieandzachary
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My daughter who is 13 is having symptoms of dysautonomia. Besides Vanderbilt the Mayo clinic Dr. Low is an expert. We have an appointment at Mayo and are seeing a Dr. Phil Fischer since she falls in the pediatric realm of treatment. The Cleveland clinic has another clinic as well. Vanderbilt appears to be researching the best with most of the publications in this field. We are considering Vanderbilt as well as Cleveland to resolve this issue. Dysautonomia is caused by various problems (virus induced, autoimmune, vasovascular, heart problems) but it all comes to parasympathatic nervous symptom control which leads to other symptoms as well. I will let you know how Mayo is but we don't go unitl end of August. Good luck!! All of our doctors tell us this is rare. This diagnosis was discoverd by Mayo and Mayo was the first clininc of this kind and I think was open in 1999 so we are new into treatment of this problem only ten years in the making. UGH!! This is so fustrating sincee it really affects the patients lives dramatically!!
Good Luck!!
Mom in Texas
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