Vanderbelt -VS- Mayo clinic Jacksonville

[buddysmom1]

I have an appt in March at Vanderbelt I live in Florida my question is this, if I travel all the way too Vanderbelt for them to tell me I have autonomic Dysfunction then its a complete waste, in fact I spoke too the nurse there and she told me they are going to do some simple tests, such as postural BP and Heart rate, A deep breathing test to measure my heart rate and BP while I do this, the Valsalva while they measure my BP and heart rate, cold pressure where they put my hand in cold water for one minute. Then I will see a Dr. there by the name of Danielle Cherdak, I was just wondering if its worth my trip and expense to go all the way there for them too tell me the same thing I already know POTS and Dysautonomic function, Pots was a possible diagnosis based on two tilt test but on the last one it was not pots it was just dysautonomia. I live much closer to Mayo in Jacksonville and I did have an appt there but from what I was reading its not as good as the mayo in Minn and the DR. I was going to see there specilizes in only pots that is why I made an appt with Vanderbelt so for those of you who have gone to either place what do you think if I am going to spend that much money and UGH have to travel so far I want the best possible diagnosis another thing the nurse told me was that they do not treat POTS with clonodine and that is what I am on and that is what so far as been the best drug of choice for me??? Thanks for this site by the way its been so wonderful for a newbie like myself. Michelle

[Richard1030]

I was told before Christmas that the VA was going to authorize an outside consult with a private neurologist to evaluate my autonomic dysfunction.  The only problem was that fee services said I could only go to a doctor within the state of GA.  Vanderbilt University Hospital is the only place I could find that specializes in this, but they are in Nashville, TN.  I just got word, yesterday, that the VA decided that since Neurology said that Vanderbilt, "is the only program found that can perform this rare and specialized service," I am now approved to go there.  I am waiting for the instruction packet from the VA and also waiting for the Vanderbilt Autonomic Dysfunction Center to get back in touch with me.  Hopefully, every thing will move along quickly.

In the research I have done on Vanderbilt and their approach to Autonomic Dysfunction, I noted that they say there is no cure but they can concentrate on treating the symptoms.  I am convinced that Vandy is probably the best place for me to go.

[buddysmom1]

Thankyou for your comments ok its off to Vanderbilt for me, I was worried they were going to get me there do a couple of those tests and I would have wasted my time and money by going there so now I feel better too  bad I have to wait till March I requested an appt there over 5 months ago and that was the earliest they could get me in. I will find out why they don't believe in the Clonodine patch for POTS?? And in March when I get back will give everyone an update. I wonder if its a one day thing or more then one day it seems as if everything so far planned for me is a one day thing. One more thing for anyone out there on Clonodine patch the first time I ordered the patches from Walgreens they gave me these patches that are hugh about 3 inches circular, it caused my skin too break down and give me red bumps I did not want too discontinue this medication, so I called the company and of course there is another brand which the patch is the size of a big pea and its wonderful I called walgreens and they admitted they get the brand that is the cheapest for them to give to their customers so from now On I have too call and request that particular brand in order to get it. Ok that is just some info I wanted to pass to you all out there and thanks again for the above posts, now I wish it was March already so I can find out what else I can do and get a solid treatment plan.

[mlb16]

I had Atrial Fibrillation and I had a ablation procedure done at Vanderbilt in Nashville. My doctor was Dr Christopher Ellis and him and the hospital was great. They are they for you and really care. I would not go anywhere else but Vanderbilt.

[Heiferly]

Vanderbilt has a full autonomic testing clinic and Mayo Jacksonville has a partial autonomic testing clinic.  There are tests at Vanderbilt that Mayo J. doesn't have (in fact some of the ones they're planning on doing on you), and likely you DO need to have those tests if you have generalized dysautonomia rather than "just" POTS.  Although I understand the expense and difficulty of traveling, if it is possible for you to do so, I really recommend that you follow through with going to Vandy.  

One thing to realize is that this isn't just about getting your actual diagnosis, it's about understanding the exact nature of your specific case of dysautonomia, the extent of the autonomic dysfunction, and what treatments will be best targeted to your autonomic dysfunction.  Tests like the cold pressor test, deep breathing, valsalva, etc., are gold standard tests of autonomic function that you can read about in any basic autonomic textbook.  They give a LOT of information about your body, as "basic" or silly as they may seem when you're actually doing them.  (Also, the correct interpretation of these tests is a lot more complex than the test itself in many cases.)

I will point out as well that they can only make *recommendations* about your treatment.  Ultimately you have rights as a patient to follow those recommendations or not to follow those recommendations, and to be an active member of your treatment team.  When it comes to discussing medications with the doctor there, I would tell her politely (but firmly) that Clonidine has been the medication that has worked best for you so far and that you are not open at this time to discontinuing that medication and would hope for treatment recommendations from them that *incorporate* that and/or build upon it.  You can choose whether or not to suggest that, if and only if, those initial recommendations do not pan out you might consider a "Plan B" or even "Plan C" that might not include the Clonidine.

I hope that makes sense.  That's only my 2 cents of course, and in the end you need to decide what is the best choice for you.  I wish you my best and will look forward to hearing from you about how everything goes.

Best,
Heiferly.