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Just Got Mayo "pots Clinic" Referral--I Have Some Questions For Those Who Have Been!


franziska
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Hello!

I am very excited to say that I just got my referral for the autonomia specialty group at Mayo. If you've been before, can you answer some questions for me?

How much say did you have in the scheduling of your visit?

>I'm in school right now and it is a very difficult program that makes it hard for me to miss even 1 day. Were you able to schedule your visit for a time that works for you? I understand that these visits take up to a week so that's why I ask.

How many hours a day were you 'on campus' at Mayo?

>I've been before and understand how the campus is laid out. I live about an hour away (I'm very lucky!!) but will be too tired to drive myself home if I'm there 8 hours a day. Do I need a hotel? So relieved y'all understand this and won't think I'm exaggerating ;)

Do you think it's absolutely necessary to have someone with me? Did you have a friend/sibling/parent/spouse with you? Could you have done it without someone?

any other tips are welcome. I've been to mayo before for the cardiology panel of tests (ekg, echo, mri, chest xray) so I'm familiar with the itinerary and what not, but anything else would be helpful!!

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It has been quite some time since my visit there and I imagine it could be a little different for each person depending on your appointment needs and how affected by dysautonomia you are but for me this is my answers to your questions:

1. I believe my time there was 4 days straight testing and it started early around 7-8am and went each day until 2-3pm. There are breaks between some appointments so you may sometimes have an hour gap or so and others you are running to try and catch the next one. As you can imagine, much of the time is spent in the waiting rooms and as the day goes on the wait seems to be a bit longer.

The last day I only had 2 appointments I think so my day was over much earlier.

2. I could have not survived going alone! I needed to be pushed around in a wheelchair the entire time. Walking was not an option and even laid on lots of floors while waiting for appointments. (The good news was I wasn't the only one!). I had my husband with me and he was literally running pushing my wheelchair to get me to some appointments so I was grateful to have him. The days are exhausting and I even needed him there for morale, he had to really push me to even make it out of bed the last 2 days! I think having someone with you is a really good idea.

3. We stayed in a hotel that is attached to Mayo so never had to go outside. I think it was a bit more cost wise but well worth it. Of course I lived far from Mayo so it was necessary to stay in a hotel. I think for me personally, even if I had lived within an hour drive, I would have wanted to stay there in the hotel because like I mentioned it is an exhausting few days and I could barely drag myself out of bed so certainly wouldn't have wanted to drive far.

4. I didn't try to ask for any special appointment time frame because I needed to be seen asap and the wait was quite long so just took the next available. I think if you are choosy you will find it will be harder to get seen or take longer but it never hurts to ask!

I hope you get more opinions and this helps. At the time I was seen there I could barely bathe myself and spent more time laying down (planned or not) than upright. I could only make a quick sprint to the nearby bathroom at home and barely make it back to bed before fainting. So I was barely functioning and this affects a lot. If I had to go to Mayo now, being slightly more functional (still homebound but able to be upright more and can sit for longer periods/ bathe easier/ rarely pass out (I have learned to live with my symptoms and manage them much better along with meds) I would still make the same choices above. I could not go through all that alone even now and would need the same accommodations due to the grueling schedule.

Good luck to you!

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You have got a referral.... but has Mayo accepted you? I know of people who had a negative experience. I was there two years ago (Rochester).

After your initial consultation - you go back out to the waiting room and wait for your schedule. Your schedule list where and when all your test will be conducted. It is not unheard of…in fact it’s probably the norm… that your test could be spread out over a week in a half. No kidding. You could have your blood test on Monday… tilt table on Wednesday… sweat test on Thursday… and your follow up with the doctor next Tuesday. So be prepared to live out of the local hotels for a while. Who knows you could get lucky and all your consultation and test are done with in a day or two – I wouldn’t bank on that though. So they do give you the option to go sit stand by for a certain test or doctors appointment. That is no guarantee that you will be seen. I got lucky with a few standby tests. Not trying to sound like a negative nanny – I’m just relaying the realities of a Rochester Mayo visit. So it’s like you buy a one way ticket there cause you don’t know or can predict when you will leave.

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I traveled to Minnesota from Florida. I had 3 appointments scheduled: GP, Dysautonomia Clinic and TTT. They were from 4 days to 3 weeks apart, with my tilt table being the last one (but they couldn't see me without ttt results in Dysautonomia Clinic anyway). I went to my first appointment with GP and then I went every morning to sign a stand by list for that day, for TTT, and later for Dysautonomia Clinic. If someone doesn't show up, they call people from a stand by list. You just have to be on the floor when the beeper goes off. Because of that, I spent most days entirely in the clinic. It was good to have my husband with me, he could go, get us something to eat and drink while I was waiting. I managed to do all the appointments, TTT and blood tests in 5 days and we left for home the day of my last appointment. We stayed at a nearby motel. Most of them have free shuttle service to the clinic.

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I was given choices of dates and took the earliest offered, which was the week before Xmas. This might work to your advantage since most people don't want that time, and with your school schedule, it might be perfect. They told me to plan for a week.

They tried to schedule me for an appointment the following week and I went and asked it to be rescheduled, I told them I wouldn't be able to be in town for over a week and was unable to return after I left. The really do seem to think people have unlimited time to be there. I had little kids at home.

As mentioned above, some days you might have back to back tests where you are literally running to get to on time and some days, one test. I was scheduled to have my last test on the Friday of the week I came and final summary appointment on that afternoon. On my slow day (Tuesday), I went to the place I was to have my Friday test, got on the wait list and got in that day. Then later Tuesday, I went to my Thursday afternoon appointment site and got in to that test. So I went to my doctors office and pleaded with them to let me see the doctor on Thursday afternoon, after my last test and got to be leave that afternoon.

As for being alone, if you can manage to walk/run on your own, you can probably go alone. I would recommend someone coming to the last summary with the doctor just so you don't miss anything. You will know your schedule for the week after your first appointment with the doctor. If your referral is to the autonomic clinic, it is possible it will be less tests and in a smaller area. You could try to talk to the autonomic clinic directly after you get an appointment and see if you can get a feel for what they plan to do.

I went back a year after my first week long appointment, and went just to the autonomic clinic and it was just a one day thing. They only did autonomic testing.

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not sure if anyone will see this but,

I got a call from mayo clinic today. they scheduled me to see the same cardiologist I saw when I was there last, calling the visit a 'cardiology consultation' (where they do all the tests and whatnot), which I've already done. One scheduler asked me if I was trying to go to the "POTS clinic" and the other scheduler I talked to said they dont have a pots clinic anymore. very confusing. guess I will have to follow up monday to see whats going on.

thanks for all the input and answers.

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