Vanderbelt Autonomic Dysfunction Center

[bmahaney214]

I saw Naomi's post about the study going on through vanderbilt and did a little research on the center

Just wondering if anyone has gone here and if they think the treatment plan they prescribed to be benifical?

This just seems like if was really a "one stop and your better" kinda thing, it's too good to be true!

If you read under the for patients tab it says you go there, stay for up to three days, and then they tell your primary care doctor your treatment plan.

http://www.mc.vanderbilt.edu/root/vumc.php?site=adc

[kluesyk]

I only saw one autonomic specialist at Vanderbilt in March. They did the autonomic testing in the am and saw him later that day. He looked at all my records and results of autonomic testing and gave me a letter stating my diagnosis and proposed treatment plan. I had to take it back to my cardiologist for treatment.

I have been able to ask a few follow up questions via email so that has been helpful, but from what I understand it is diagnosis there only and you followup with local drs.

It has been helpful to have the paper with the diagnosis, but I am still struggling to find a dr to help with this condition here locally. I have went through several of the proposed meds that have not helped or I cannot tolerate. (Methyl-dopa,Propranolol, Lexapro all I could not tolerate) My cardiologist is kinda just telling me to live with it.

Had a neurologist try mestinon(which helped, but gave me bad asthma), and a nephrologist give me clonidine(sm amount) which has been the only drug that I can tolerate that helps.

Also increasing my salt and water and wearing compression hose ankle to waist has helped.(Vanderbilt reccommended these).

I think we are all so different in the causes of the POTS that it is difficult to find the combination of meds that help. Each one is unique I think.

So Yes, it was worth going. I stayed at the Hampton Inn which is really close to the Autonomic Center. It took about 3 months to get an appointment. My cardiologist emailed the dr so maybe that is why it was quicker.

Good Luck and hope you feel better soon!

[Christy_D]

Brynne,

Vanderbilt doesn't treat children though. Vanderbilt is closer to us (5 hours), but we had to go to Cleveland for help (9 hours) for our son. In Cleveland, we had a doctor that diagnosed and treated.

Christy

[HopeSprings]

Kluesyk - do they go beyond diagnosing the illness (POTS for most of us) and dig deeper to try and find the underlying cause? Like once they confirm it's POTS, do they check whether your HyperPots or MCAD or Autoimmune Pots or Autonomic Neuropathy etc. etc.? I would love to go there if the future, but only if they are going to know more/do more than your average Dr.

[firewatcher]

I was "officially" diagnosed with POTS at Vanderbilt. I went as an outpatient, spent one day and had the basic autonomic tests. I did not have a TTT, but they did do lying and standing orthostatics. Based on my ANS test results and presentation, they suggested a possible type and cause. A year later I went back and had further testing, but never as an inpatient. They suggested a treatment plan and conferred with my doctors if they called. Once I was in the system, I was able to email my doc at Vandy with questions, which has been helpful. It was no "miracle visit" or "fountain of wisdom," but they do know what they are looking at. As far as non-POTS things, they've been no more help than any other doctors; they just say "hmm, that isn't POTS...go to a ________ologist for that."

[lgtaylor100]

Has anyone been an inpatient at Vanderbilt and participated in their research studies. From reading their website I understand that there is an inpatient stay of 11-14 days. If you have participated has it been helpful?

It sounds as if they do not diagnose other symptoms that may not have to do with dysautonomia. Has anyone found a facility where they diagnose other symptoms as well. Perhaps Mayo?

[HopeSprings]

Firewatcher - did they give you the Hyperadrenergic Diagnosis? And if so, how did they arrive at that conclusion?

[firewatcher]

"Firewatcher - did they give you the Hyperadrenergic Diagnosis? And if so, how did they arrive at that conclusion?"

They did, based on my ANS tests. They did not draw a norepinephrine level, they just used the results of the standard testing. Apparently patterns have emerged that strongly suggest a "type" and mine was Hyperadrenergic. I believe it had to do mostly with the strong BP responses and the upright tremor and flushing. They also suspect MCAD, but my testing was not definitive for that.

[bmahaney214]

Now have a more specific answer to what you have, does it make any difference with treatment?

I feel like, yeah it's great that they can tell you what type of dysautonomia you have, but if they are purely just a center for this they should be offering more. .... That probably sounds greedy haha but I hope you understand what I'm trying to say.

-Brynne

[kluesyk]

Basically they did exactly the same for me as they did for firewatcher at Vanderbilt.

I wish they would have done more tests to discover the cause. Maybe if you do the clinical trials it would be different. The Hyperadrenergic diagnosis was based on my resposes to the ANS testing, flushing, and my past symtoms. I recently(in other testing at home) have an elevated Chromogranin A test which is a marker for NET or carcinoid, so I am seriously thinking of trying to get more testing to determine the cause of my flushing and tachycardia.

I think the diagnoisis of POTS is important, but more important is the CAUSE. Until then all we are offered are bandaids and like me so many are VERY sensitive to medication and most meds will not help.

[sue1234]

"I think the diagnoisis of POTS is important, but more important is the CAUSE. Until then all we are offered are bandaids and like me so many are VERY sensitive to medication and most meds will not help."

Kluesyk, totally!

[janiedelite]

I feel that Mayo excelled in investigating the cause of my POTS/small fiber neuropathy. I was checked for over 30 different causes of POTS/SFN including diabetes, autoimmune, and even rare ones like amyloidosis (by a fat pad biopsy). I only was seen by the autonomic neuropathy dept but they did sent me to other depts to get testing for other body systems (like radiology to check for tumors when they thought I might have a bowel obstruction, GI dept for motility tests, etc).

[hilbiligrl]

I went for testing in feb of this year. Although the staff was super nice, very friendly and helpful, my doc was an arrogant know-it-all who insisted i was lying about several symptoms (and i had such high hopes and respect for this doc, cuz i thought he was passionate about helping us). My testing lasted but only 30 mins..... one where i breathed into a device for a few mins, which almost had me passed out on the floor and the other was a very poorly done poor man's tilt table test. (I've had 2 tilt table tests to come back inconclusive). I was initially told i would be there an entire day for various kinds of testings. Wrong. Tested those 2 tests and some bloodwork and then a 30 min arrogant lecture about how i was making up what my symptoms where and that my probs were due to lack of sleep????? Well, he did say that he did believe there were obvious autonomic issues at hand but couldn't diagnose me due to not having the results he was looking for.

Im sure they do great work. But unfortunately, not only have I been humiliated by 'that hospital and the docs I encountered' there, once... but twice. I was so disappointed and heartbroken.

Just my experience..... there are plenty of positive ones out there.... i just happened to be one of the few that was treated poorly.... but that's ok. I think if anyone can get there, they should at least.... i try to tap all bases that are available for me, whether it ends up on a positive note or a negative note..... at least i tried.

Just my experience...... but again, many more on here have had great experiences there. For me, they just made me feel worse about myself.

God bless!

tennille