Any Experience At Mayo

[jamernay]

Recently, due to increasing neurological symptoms, my PCP recommended I travel to see the docs at Mayo who have more experience with dysautonomia than any neuro docs in town. My electrophysiologist has been the primary doc for the dysautonomia, but he is no neurologist. Also, there has never been a complete definitive dx as to what type of dysautonomia I have. They suspect PAF or AAG, are there easy tests for that? Didn't think so. I would love to know what I really have!

Anyway, I was wondering if any of you had experience at Mayo and could recommend specific docs. I've seen the list on this site, and I trust these people are competent, but I was hoping for any input you may have. I am open to going somewhere else, if its better. My EP suggested Johns Hopkins, but I can't find any info that there's anyone there that has real dysautonomia expertise.

Thanks ya'll!

Jamie

[Aquadiva]

Recently, due to increasing neurological symptoms, my PCP recommended I travel to see the docs at Mayo who have more experience with dysautonomia than any neuro docs in town. My electrophysiologist has been the primary doc for the dysautonomia, but he is no neurologist. Also, there has never been a complete definitive dx as to what type of dysautonomia I have. They suspect PAF or AAG, are there easy tests for that? Didn't think so. I would love to know what I really have!

Anyway, I was wondering if any of you had experience at Mayo and could recommend specific docs. I've seen the list on this site, and I trust these people are competent, but I was hoping for any input you may have. I am open to going somewhere else, if its better. My EP suggested Johns Hopkins, but I can't find any info that there's anyone there that has real dysautonomia expertise.

Thanks ya'll!

Jamie

My daughter just saw a dr. at Mayo. I will send you a message.

[potsgirl]

Many of us have gone to the Mayo Clinic (Rochester, MN is where the autonomic specialists are), and if you do a search for past emails, you'll find a ton of information! Great place to go, where you can have all the tests done all under one roof in a week or so. Good luck, and let us know what you decide. I saw Dr. Goodkin, who was wonderful.

[Poohbear]

Have you considered Vanderbilt Autonomic Research Clinic? They are much closer to you.

I've been to both places and especially when it comes to care over the long term I've gotten much more help from Vanderbilt than Mayo clinic.

[mynagirl]

I saw Dr Sandroni there. She's amazing, and the care and diagnostics there are unbelievable. They're so well organized, they can send you for tests within a few hours so as soon as they see something possible or developing, they can send you down that diagnostic path quickly. They did more in 4 days than I'd had done in YEARS. Definitely recommend. I went on a general neurology recommendation and when I got there I asked for autonomic and was on a waiting list for part of two days - sat there knitting in the waiting room and there was an opening for Dr Sandroni. So glad she could fit me in!

Definitely go if you can organize it.

[jamernay]

Many of us have gone to the Mayo Clinic (Rochester, MN is where the autonomic specialists are), and if you do a search for past emails, you'll find a ton of information! Great place to go, where you can have all the tests done all under one roof in a week or so. Good luck, and let us know what you decide. I saw Dr. Goodkin, who was wonderful.

Thanks for the info. I'll definitely do a search through past posts and get more informed that way.

[Eillyre]

I had an excellent Mayo experience with Dr. Low. It's an amazing hospital--very peaceful and wonderfully efficient! Even the shuttle bus drivers were friendly and thoughtful!

[momdi]

the good news about Mayo Rochester...

all that's been said here. It's organized, efficient, "pretty", pleasant. "Minnesota nice" pervades the whole experience - inside Mayo and outside as well. Our son saw Dr. Low a few years back and we received information that helped us all to better understand his type of POTS. He was referred there by his EP and we were given an appt. with Dr. Low within a few weeks. We've also seen Dr. Goodman at Mayo Scottsdale and he has since moved to Rochester. They are both neurologists. Would recommend them both. Dr. Low is the guru and himself has an adult son with POTS (ironically our son's age).

the bad news...

There is virtually no follow up. You will leave with recommendations. Don't let the door hit you on the way out. When a local neurologist wanted to add mestinon to Michael's regimen, we sent a note to Dr. Low. Many weeks later he replied with a one line statement saying that would be a good idea. There is no avenue for follow up communication, unless your docs know a secret password. Or unless things have changed.

Also, Michael has been doing better since seeing an EP cardiologist and trying Clonidine. Given all the posts here at dinet, we had asked Dr. Goodman to prescribe it, but he would not. Michael was on Inderal and mestinon, and having a very slow heart rate with both together. Very slow. This new EP has a fraction of the knowledge of the Mayo guys and seemingly little interest in gaining more knowledge - but he changed Michael from inderal to a long acting form of toprol and added clonidine and asked for a sleep study. So bottom line, while we learned many invaluable things at Mayo, the most helpful treatment has come from an EP who self-confessed he knows little about POTS.

In fact, we would like to go to a POTS center again soon to get a review of Michael's care but this time I would look for someplace that is committed to follow up. Suggestions anyone?