Autonomic Clinics

[Mrs. Glass]

I was just wondering how hard it is to get in to see a doc at one of the autonomic clinics? What is the process of going about it? The closest one to me is the Vanderbilt Clinic in Nashville. I am so sick of trial and error from docs who do not know what they are doing. When I went to the hospital for preop testing I had to explain in detail what was going on in my body. Now the day of the surgery I will have to go over it all over with the anesthesiologist (spelling?). I keep wanting to give up on the doctors but my family wont let me. I checked with my insurance and they told me as long as the doctor or facility was in my network,that it did not matter where I went. I could go anywhere in the US for treatment and it would be covered. Vanessa

[MightyMouse]

It's not hard to get to be seen at any of the clinics, but there is usually a wait of several months for an appointment--up to a year in some instances if you're a new patient.

All you need to do is go to the physician's listing pages on the main DINET site and call. The staff will usually schedule you for an appointment, and likely send you information you need to fill out and either send before your visit or bring with you. Studies are harder to get into b/c they have specific criteria, but if you just want an evalutation appointment, all you need to do is call them.

Nina

[Eillyre]

Hi Vanessa!

Sorry your at that frustrating stage! It is a pain, isn't it!

It only took me 7 months to get into Mayo. I received initial diagnosis at UPenn in September 2004, researched POTS doctors for the rest of the month, got my referral into Mayo in October 2004, and saw Dr. Low in April 2005. We were surprised at how quickly they were able to take me because it's not uncommon to have to wait 8 months to 1 year. The doctors are just so busy with all these hordes of complicated cases -- that's why we all end up there, right?!.

When you do start sending records to the doctors, try your best to make your file stand out from all of the other thousands of files being sent in. The cardiologist that sent my referrals provided what both my dad and I considered to be a very poor request for admittance. It was only about 3 sentences saying that I had difficulty with light-headedness, shortness of breath, my blood pressure dropped upon standing. Not a syllable mentioned about how I had to stop my active dancing career and basically lay miserably on the couch all day, how none of the standard medications had worked, etc.... There was nothing there to intrigue a doctor, make him feel sympathetic to my plight...I wasn't about to trust that letter to get me in to a knowledgeable researcher!

My dad (a physician himself) suggested that I supplement the referral with some additional papers to make the doctor fascinated by my case. We sent:

1) a cover letter summarizing what I had been doing before I became sick, explained my most disabling symptoms, listed tests performed and mentioned that they had been relatively inconclusive, mentioned medications that I had tried but received no relief from, explained my inability to function even close to normal, and ended with a tasteful plea for help as my local physicians felt they had reached their limits . This part was to give the doctor a brief, but more accurate and compelling overview of my case and to inspire interest to read more.

2) a personal narrative (mine was 4-pages) chronologically documenting in further detail the progression of my illness (what my life was like before I began having symptoms, how the symptoms presented themselves, how the illness progressed, how my life and ability to function changed so drastically because of the health problems, what my present condition was, etc.). I didn't think a doctor would be interested (with all the papers they have to read in a day why would they want 4 more? ), but my dad insisted that it was every good doctor's dream; they rarely receive a good detailed description of ailments from start to finish in a consultation. He was right! When Mayo sent me my records after my visit in April, included was a photocopy of the personal narrative, complete with arrows, circled words, Dr. Low's notes to himself ...who would have thought?! It has proved a rare and handy resource for a number of my doctors.

3) a summary sheet of all the tests & their results

I can't guarantee this will get you into Vandy, but in my experience it certainly hasn't hurt!

Best of luck!

Angela

[Gena]

I got into to Mayo Clinic in Jacksonville twice with only a 3 month wait as a new patient and only a 1 month wait for a return visit. My Primary doc's office just called up and made the appt. For the return visit, I made the appt. myself simply by calling the cardiologist's secretary. This Mayo clinic is not even in my insurance's network, but they still paid a majority of the costs and my Tri-care secondary insurance picked up the rest of the costs.

I never quite understand when people on the board say they were denied access to one of the clinics. I've never had a single problem getting in. Maybe other clinics work differently though.

Good luck!

Gena

[Poohbear]

I've been seen by both Mayo in Jacksonville, FL & Rochester, MN. I waited 3 months to get my appt in FL and waited 4 months for MN. You can go to www.Mayoclinic.org and click "becoming a patient" and now you can make a request online. If you don't hear back within a week call and follow up.

I participated in a research study at Vanderbilt and my Dr sent in records which may have speeded some of that process up a bit though I'm not sure. Anyhow, after sending my records I was seen in 2 months.

As was mentioned earlier, for research you have to fit their criteria and you have to be able to go off and stay off all meds for about 3 weeks total.

The only place I've heard of waiting such a long long time is for Dr. Grubb. The last time I checked his wait for new patients was about a year and he does no testing so I didn't feel in my case that would have given me any new answers or options to try.

I would recommend any of the above facilities. There were different positives and negatives to each of my experiences but overall they were all positive.

One thing I would caution you on... you made a statement about how you are "sick of the trial and error", most likely even the above listed facilities will offer suggestions that are largely trial and error. They do, after running tests, have more educated guesses about what might or might not work but this disorder I'm afraid, for most is a trial and error approach.

[Sunfish]

for vanderbilt i only waited a few months. the best way to start the process there - if you're interested in research studies - is to fill out the questionnaire on their website. in the meantime collect your records as they will call you for them after receiving your questionaire. the link is on the page mentioned by nina above...

hope this helps,

melissa

[Jenn202]

If your current POTS Dr is willing to refer you I believe it would be quicker to get in. I got into Mayo in 4 months upon my Dr referral.

Also a tip for Mayo IF you end up going there: You can get in much quicker if you start by having an appt with one of the GP's...... They will coordinate your specialists and tests from there.....

I was able to get in to the autonomic clinic right away b/c of this.

Good Luck

[Guest Finrussak]

with Mayo---its harder...Dr referrals and letters and begging will fall on deaf ears IF you dont fit what theyre wanting to see ...I had a medjet plane waiting on the tarmac and my cardiologist and neurologist ON THE PHOINE with them begging and they truned us down...twice...

They finally admitted that my sx were not of interest at that time!!!! and that they " dont make recommendations for other drs who may be able to help"!!!!!

I started to research med libraries and email every author...found Dr Biaggioni at Vandy...and was after 8 months offered a visit...BUT had to be well enough for reg transport NOT med jet...and I wasnt...then Dr Grubb's appt came thru and I made the 11 hrs by car, flat. ( Vandy wouldve been another 4 hrs at least...never wouldve made that)..

Vandy is easier by far to contact and get info from...while waiting to stabilize Dr Biaggionni spent time on email and phone with my local Drs ( Mayo refused that too)--and less wait than Dr Grubb....the best plan is to email DIRECTLY to the many physisicans there...one of them will try to schedule you...also send a BRIEF history and sx list...while the depts want to see a throough history, the drs are very busy...and have told us directly theyll hand the packet over to an assisitant/secy....where it may wait on a desk!!! and in meantime they can suggest tests to do while waiting---ask....this way you wont waste time. As far as Mayo florida, their satellite flat out told me that very difficult cases arent best seen there and if I cant get into Rochester, not to bother!!!!

so, send the larger detailed packet to dept at Vandy and a supportive email directly to the 4-5 drs in the dept ( find them on website below) and let them know how ill/desperate you are...the hearts at Vandy are bigger ( but not bigger than Dr Grubb)

And be aware that a few on the boards have had problems while at Vandy and at Mayo!!! nightmarish stories of poor treatment by staff etc....may be isolated or having to do with their own special situations...but it pays to ask...

Giood Luck

Italo Biaggioni, M.D.

1500 21st Avenues South, Suite 3500

Clinical Trials Center

Vanderbilt University

Nashville, TN 37212

USA

Phone: 615-343-8010

Fax: 615-343-7929

E-mail: italo.biaggioni@vanderbilt.edu

Multiple System Atrophy (Shy-Drager Syndrome)

Autonomic Failure (PAF, secondary autonomic failures)

Orthostatic Intolerance (POTS, mitral valve prolapse)

Syncope

Other autonomic disorders

and in general the autonomic center:

http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4770