Anyone Been To Vandi?

[avidita]

Hello fellow sufferers

I am anxiously awaiting the Mito results from Dr Shoffner in Atlanta....In the mean time, since my diagnosis went from POTS to Autonomic Dysfunction due to my latest TTT blood pressure dropping to 50/25 on the 15 minute, I was wondering if it would be worth it to go to Vandi to shed some light on what type of autonomic dysfunction I am dealing with. Since I've already had a barrage of tests, I was wondering if anyone who has been to Vandi would tell me what tests they do there. I wonder what they do that puts their finger on a more specific diagnosis than autonomic dysfunction....On a different note, I am also confused about that blood pressure plummet. I've never had one before and I've had a 25hr BP monitor plus I am obsessive about measuring it all the time....I am not sold the one time deal rules out POTS, since some POTS patients faint and I am not sure how that would come about without their BP dropping at one point.....Anywho...I would appreciate anyone who is willing to share their Vandi test experience with me.

Thanks!

[Tommyhoney]

Hi there,

Sorry I have no information for you, but after being on the fence about it for quite some time, (my autonomic specialist went on med leave I wasn't sure what I wanted to do) I decided to go ahead. I just got the package, my appointment is in February. I've heard great things, and not so good things- so I'm a little apprehensive.

Maybe some folks will chime in. (Am I hijacking your post? sorry)

I will let you know how the admission process goes, at least...too overwhelmed to go through the packet right now, next time I feel "ok" I'll address it.

Tommy

[nunntrio]

My wife went to Vandy for the two weeks of testing. She left with a POTS diagnosis and not much else. She was basically a test subject for different types of meds. Unfortunately, she can not tolerate most medications. So, this became quite an ordeal for her as she suffered through the various side effects. She was not helped by any of their drug trials at all. Overall, we did get a generic diagnosis; all of the people there we friendly; we are glad she did it; we are no closer to resolving her situation.

If you'd like her take, please send us a private message and I am sure she will respond. Best of luck to ya.

[stacdliw]

Hello fellow sufferers

I am anxiously awaiting the Mito results from Dr Shoffner in Atlanta....In the mean time, since my diagnosis went from POTS to Autonomic Dysfunction due to my latest TTT blood pressure dropping to 50/25 on the 15 minute, I was wondering if it would be worth it to go to Vandi to shed some light on what type of autonomic dysfunction I am dealing with. Since I've already had a barrage of tests, I was wondering if anyone who has been to Vandi would tell me what tests they do there. I wonder what they do that puts their finger on a more specific diagnosis than autonomic dysfunction....On a different note, I am also confused about that blood pressure plummet. I've never had one before and I've had a 25hr BP monitor plus I am obsessive about measuring it all the time....I am not sold the one time deal rules out POTS, since some POTS patients faint and I am not sure how that would come about without their BP dropping at one point.....Anywho...I would appreciate anyone who is willing to share their Vandi test experience with me.

Thanks!

[stacdliw]

I just completed a wide range of tests at Vandy and I would recommend their facility and physicians wholeheartedly. My neurologist was very thorough, listened attentively to all of my symptoms, and ran appropriate tests based upon my symptoms. Overall, I was pleasantly surprised at how well the facility was run. Rarely were appointments extremely delayed and their billing department is equally efficient.

When I was referred to Vandy, my only diagnosis was Autonomic Neuropathy, so I was shocked when I received the diagnosis of POTS. On your first visit to Vandy, you undergo a variety of autonomic tests. Based upon the result of these tests, the neurologist may order a battery of blood tests and the QSART- a sweat test. The results of the QSARTrevealed that I also suffer from small fiber neuropathy. In addition, I demonstrated some insensivity in my feet and reported some stumbling, so the neurologist also scheduled further testing for large fiber neuropathy, which if a diagnosis could be made it could have identified the reason for my small fiber neuropathy which in turn, the cause for my POTS. Luckily, I tested negative for large fiber neuropathy, so the cause of my automonic neuropathy and POTS is idiopathic, or unknown. However, I would have never had known that unless I had undergone these more indepth tests.For you; howevever, one of these my identify the cause of your POTS which will help in the treatment of your disorder.

As for my treatment plan, I, too, am sorta in the experimental phase. Immediately after being diagnosed with POTS, I was prescribed 3-6 salt tablets daily to improve blood pooling and, to my surprise, it did help. On my last visit with the neurologist, she wanted to put me on Florinef, but I'm allergic to cortisone. Then, she prescribed a medication primarily for an entirely different disorder( myasthinia gravis). I questioned how it would help my POTS, but the neurologist said it helps by lowering the heart rate so when my heart rate does go up, my symptoms should lessen. Needless to say, I was skepical, but it's working! I've been on it over a week now and I can walk through the store without getting out of breath!! I can shop again!!

It's worth going to Vandy to get a full evaluation so you know exactly what you have and what you don't have-- the neurologis who performed my test for large fiber neuropathy said I had "really wierd arches" in my feet and that probably what's causing my stumbling. Who would have thought that! At least you'll know that you have done everything that can to get the best treatment for this disorder. Good Luck!

[sue1234]

Bev Ray, I would love to shop again!!!!!! So, that med keeps you from getting lightheaded? Or, does it just help with your breathing?

[avidita]

Thank you everyone for your replies! They do sound like they are very thorough. I will wait out my Mito diagnosis and if nothing comes up there, I will definitely make an appointment at Vandi. Wish I had started there. Thanks again!