Autonomic Clinics/Centers

[potsiebarbie]

I've seen a lot about autonomic centers and have several questions for those who have used them.

How did you find it?

Did your insurance cover it?

What was your experience?

Was it worth it?

Thanks in advance! 

[Pistol]

In my case I found it by researching my symptoms, my PCP referred me, my insurance did cover it, I was very disappointed in the treatment ( seen by a student doctor who conducted the interview and followed by a brief exam by MD ), had autonomic study done and was told all was well, was instructed to take salt tablets and increase fluids. No mentioning about why I was having tachycardia, hypertension, fatigue, syncope etc. Follow up in 2 months ( 9 hours each way ) was told I am fine despite continuing syncopal episodes. It was absolutely a waste of time ( this was a major renowned autonomic center ). Only after seeing another autonomic specialist who right away ordered catecholamine testing and discovered and confirmed hyperadrenergic POTS was I in good hands. -- This is my personal experience - many others have good stories to tell. Best of luck!!! 

[DizzyGirls]

We went to Stanford, as they have the only one on the west coast of the US.  My daughters' insurance covered it because there were no Autonomic Clinics within the providers that they contract with.  So, in their case, they had to make an exception and cover it.  Yes, it was well worth it.  We saw Dr. Jaradeh, who was phenomenal!  I didn't have to really tell him what was going on because he could see it by looking at the girls.  They both had tachycardia just walking in the door, loose joints (diagnosed both with EDS), blood pooling, etc.  Of course I had to give him their medical history and symptoms, but didn't have to explain how they were affecting them.  That was such a relief!  Now, all this being said, I would not continue with them for follow up.  His PA, who I thought was really good in the past, has made some poor recommendations since that first visit.  Dr. Jaradeh doesn't do follow up, he's just too busy.  We had to wait about 5 months for our appointment, but I've heard since, that the wait time is about 13 months.  The girls had the TTT as well.  It has been an invaluable resource as our current cardiologist, who is very POTS savvy, asked if they had ever had testing done and where.  I told them yes, TTT, and Stanford.  His reply was "excellent".  So, it is worth it just for that alone.  It gets you in a lot of doors.

[potsiebarbie]

Thanks for replying! Did you all need referrals? 

[Colomom]

I took my son to Mayo Rochester, for us it was worth the trip from Colorado to Minnesota. I chose Mayo because my past experiences with Mayo were amazing! My son was already a Mayo patient, so we didn’t haven’t to deal with the long wait times that are typical when going to Mayo.

As far as insurance coverage, my advice is to try to get appointments at all the top places. Once you have the appointments you can always cancel if you find that your insurance won’t cover it, call ahead of time to confirm insurance coverage. If your doc will give you a referral  it would likely help with insurance coverage and may get you an earlier appointment. With my son I was surprised  to find that Mayo Phoenix, which is relatively close to us (one state away and less than an hour by airplane) didn’t accept our Colorado insurance, but at Mayo in Minnesota our Colorado BC/BS insurance was golden. My son spent a week at Mayo Rochester seeing numerous doctors and doing multiple tests, we  only had to pay about $400 out of pocket for a couple of tests that our insurance didn’t cover. 

My final piece of advice is if you do go to an automatic clinic; temper your expectations.  The clinics are great for expertise and diagnosis, but ideally for ongoing care you need to find a knowledgeable local provider.

 

[Pistol]

Does your insurance plan require referrals prior to appointments? If so your PCP( or referring physician ) usually does all the paperwork and they will work on eligibility with your insurance. If you are not covered they will notify you. If you do not need a referral you can either read your policy about out-of-network visits ( yiu can find out what percentage you would have to cover yourself ) or you can call your insurance. In my case the specialist was not on the plan but my PCP filled out a ,medical necessity form as well as requesting the out-of-state specialist because there is no specialist in my state. The visits were covered from then on.