I know that historically people have not thought of the Mayo Florida for AD testing. Here is some good and useful news. The above link takes you to an a news release from the Mayo Clinic Florida about expansion of it's testing facilities to now include, among others, Autonomic Testing. The title:
"Testing for Neurologic Disorders Expands at Mayo Clinic
Experts at the clinic diagnose underlying disorders with specialized tests
Thursday, September 09, 2010"
The paragraph about this subject is quoted from the above-referenced link:
"Autonomic testing — Mayo Clinic is one of the only centers in the region that offers autonomic testing, which is used to diagnose autonomic nervous system irregularities that can affect key functions of the body such as heart rate and blood pressure. The new facility features several new state-of-the-art autonomic laboratory tests."
I hope this isn't knocking the wind out of anyone's sails. PLEASE don't shoot the messenger! :-/
I spent a small fortune in cell phone minutes today trying to track down the right person at Mayo FL who could answer which tests they actually made available.
First of all, they have expended their autonomic testing suite from one room to two rooms, so they can now do testing on two patients at a time which means they can accommodate the demands of increased dysauto patients. (Thank you, Mayo FL!!!)
Here are the tests they have available: QSART, Valsalva, heart rate variability/deep breathing, and "neuro" tilt*. She explicitly said these are the only autonomic tests. (There are other neuro tests in the department, but these are the same ones available through any neuro lab at any hospital such as EMG, EEG, etc.) They don't pull blood samples on tilt, which means no serum norepinephrine levels on tilt, but see my footnote to go with that asterisk on the tilt for a caveat on that.
They do not have: transcranial doppler on tilt, small fiber nerve biopsy (for followup on positive QSART), TST (though strangely she seemed to think they did in the past but got rid of it when they started using QSART ... the two are not interchangeable so I'm not sure why that would be the case), pupillary response, cold pressor, isometric handgrip, or radionuclide hemodynamic testing. (They also don't have strain-gauge plethysmography but I'd say it's possible that this would be available through Vascular if your doctor really wanted to order it. You just won't be getting it on tilt.)
*Footnote: Some of the major autonomic clinics do separate "neuro" vs. "cardiac" tilt table tests, and so it is here. A neuro tilt is shorter (say, up to 10 minutes) than a cardiac tilt (say, up to 45 minutes) and it is the cardiac tilt (if either—sometimes it will be neither) which would be the one to include a isoproterenol (or similar) challenge. Whilst they reported not doing serum NE draws on tilt, it is possible that these are done in their cardiac tilts outside of their neuro autonomic lab instead. The information here is strictly regarding the autonomic lab.
Overall, the tests they do have cover most everything that would be needed for an autonomic workup by MOST patients in our community (though there are exceptions) with the notable exception that they seem to be lacking any test which would speak to the issue of blood pooling/blood volume. I know some patients feel quite relieved to find out more about the extent or location of their blood pooling, so this may be something that is felt to be lacking.
For the minority with disorders like PAF, MSA, or generalized dysautonomias rather than POTS, NCS, MVPD, or IST, the host of tests that are missing might make more of a difference I would think. It would likely also be more of an issue for those with autonomic denervation, such as that secondary to autoimmune disease.
In short, this facility will be a great fit for some; however, it isn't quite as comprehensive as some of the other autonomic clinics up north and so unfortunately, some may still feel the need to travel to seek diagnostic testing. My hope is that they will continue to expand these facilities until they match what is available at Mayo, MN!
Oh, btw, that contact number listed on the sidebar of the press release to "Cindy Nelson" goes to their marketing department, apparently. So if you're wanting to inquire about the autonomic lab, it's not helpful (or so the supervisor of the woman I spoke to in scheduling eventually deduced). They eventually managed to just directly connect me to the autonomic lab (which was what I'd asked for in the first place, hahaha) ... so if you try calling, try asking to speak to a technician in the autonomic/neurophysiology lab if at all possible and if they want to route your call to that other woman, you can at least try to tell them that she's just someone in marketing and that's not going to work.
Thank you so much for taking the time to do all the research and double checking with the Mayo Florida for all of us out here trying to wade through the sea of information and options. I can't imagine that you would be taking the wind out of anyone's sails by sharing important news about help that "is" available in the State of Florida. I honed in on the part of your post that said "Overall, the tests they do have cover most everything that would be needed for an autonomic workup by MOST patients in our community (though there are exceptions) with the notable exception that they seem to be lacking any test which would speak to the issue of blood pooling/blood volume." That covers the majority of folks, and unfortunately leave out some that will still be searching. The good news is that from what I see, there is a definite trend for more research and probably diagnostic options that would follow, thus allowing physicians at the Mayo to expand their practice to include dysautonomia, so that even if there is only 1 or 2 docs "designated" as dysautonomia specialists there, they definitely work with other specialty docs in the clinic for cross referrals that have seen and treated dysautonomia patients. I was having an exit meeting with the electro physiologist's nurse and shared how there is no one in Southeast Florida specializing or even able to diagnose or care for patients with dysautonomia (even though we have the large Cleveland Clinic and gigantic Univ. of Miami/Jackson/Mt. Sinai/Miller School of Medicine facilities). She was surprised and assumed that there are other places and then commented, no wonder why we are seeing so many patients with POTS. i guess from their perspective, it could seem like all of a sudden there are alot of people with POTS / dysautonomia - but the reality is that the patients cluster there because they offer the very best hope for diagnosis and follow-up in the entire state.
So in my mind, your report is a good thing. It shows that progress relating to getting help in Florida is making headway.
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