Mayo Clinic’s Autonomic Clinic — A Guide

This blog wouldn’t exist if I hadn’t gone to Mayo Clinic’s Autonomic Clinic and been lucky enough to have a lot of people who wanted to stay up to date. While I covered what it is like to go through the clinic, there are some basic (and important) questions I have come to realize I have left unanswered. If you want to know about the testing itself or my consultations, check out those posts. I will use Autonomic Clinic and POTS Clinic interchangeably. Autonomic Clinic is the more accurate term as they help people with all sorts of dysautonomia, not just POTS. However, I have gotten used to calling it the POTS Clinic, so too bad. 🙂

The "Welcome to Mayo Clinic" sign, we took this picture on our way out of town -- kind of backwards!

How did you get into Mayo Clinic?
It was actually quite easy. After my Tilt Table Test indicated I had POTS and it became clear to me it isn’t a common illness, I asked for a referral to Mayo. They have what is called The Autonomic Clinic or POTS Clinic and it is one of the best in the world. I am lucky enough to live a 6 hour drive away. I called their general number and explained the area of Mayo I was trying to get an appointment with which is their autonomic clinic. They connected me with them and I asked for their fax number where I could send a doctor referral. My cardiologist just sent a referral letter and my labs to Mayo. Once they had the referral and everything, they called to let me know I was on a wait list. There was a 5 month wait which is quite short compared to the waits I have heard about lately. If you can, I’d say just get your name on the wait list while you decide if you want to go or not. When the time comes closer, you can always back out!

In late June or early July, they called to give me official dates for my appointments. I was sent all sorts of paperwork (insurance, HIPPA, willingness to be included in research) etc… As the date got closer, I was sent a packet full of information about my appointments. Not only was I given a schedule or my entire time at Mayo Clinic (including doctor names/specialty), I was given details on how each and every test was conducted.

Here is a general page about becoming a Mayo Clinic Patient.

What should I think about when deciding if Mayo Clinic is the right choice for me at this point?

  • Realize the doctors at the Autonomic Clinic are not going to be your new autonomic specialist, cardiologist, neurologist or anything like that. They are consultants. They will happily speak to your doctor (and you) about the ins and outs of your condition and how to treat you, but they will not be the ones calling in your medications or adjusting the dose. A year later, I am still welcome to call when I hit a roadblock. They suggest a plan of action which my PCP is responsible for putting into place.
  • If you would like to know things such as what type of POTS you have, Mayo Clinic is an excellent choice. They will do testing in order to help determine if your POTS seems to have a neurological root or an adrenal root or possibly neither. I believe it is very important to know if your POTS is a result of nerve damage or over active adrenals as this could get you closer to finding the root of your POTS as well as give you a better idea of what to expect.
  • If you are concerned tests you’ve had done were done incorrectly, Mayo would be a good choice. Mayo Clinic has more expertise in reading autonomic tests than most doctors at a traditional medical facilities. They also have the facilities to do tests that, more often than not, cannot be done at a traditional hospital. They have high standards and do POTS testing very often. In fact, they will redo any testing you’ve had. While the tests your doctor at home did will get you in to the clinic, they will conduct their own testing for the purposes of their consultation with you.
  • If the doctors you have access to say things like “You probably have an underlying anxiety disorder” or “You’ll grow out of it, there is nothing to do except wait” or even “I’m not sure what to do for POTS” you would probably benefit from having access to autonomic experts such as those at Mayo. They will lay out a plan for you that includes recommendations for exercise and prescriptions. Mine included a timeline where if one thing didn’t work, we knew what we should try next. For example, if salt loading didn’t help my blood pressure, it was recommended I started taking Midodrine. One year later, I am still welcome to call and leave a message for the doctor. When my PCP is unsure on whether or not to give me a certain medicine or if a particular symptom is related to my POTS, we call Mayo and they guide us.
  • If you want to understand how POTS is causing other symptoms, Mayo Clinic might help. A lot of symptoms I had could be explained by the Autonomic Neurologist.
  • If you have been to other respected autonomic centers, in my opinion you probably will not gain much from Mayo Clinic in most cases.
  • If you are looking for a cure, you will be disappointed. If you find the cure for POTS, please let me and our fellow POTSies know!
  • If you want to find the root cause of your POTS (NET deficiency, EDS, kidney issues, etc.) then Mayo Clinic’s POTS Clinic will probably disappoint you. For example, I now know I have hyperadrenergic POTS, but I do not know what causes my body to release so much norepinephrine in the first place.

Do I get to pick what doctor I see?
It would depend. Some of the autonomic doctors you hear about at Mayo no longer take new patients, so they are off the table. I suppose if there was a specific doctor in the POTS Clinic you wanted to see, you could say you’d wait as long as you needed to in order to make sure you would see him/her.

I’m not recommending this, but just so you know… You also could just make an appointment with whatever doctor you want so long as the referral is appropriate and the doctor accepts you. (Yes, doctors can reject you LOL) For example, you can just make an appointment at Mayo Clinic in the gastro department for chronic bloating. There is no guarantee you’ll get all the testing, results, and everything in a week time frame like you would if going through a scheduled clinic, but still, it is an option.

Is the POTS Clinic inpatient or outpatient?
It is outpatient. Some patients who enter Mayo through the ER or admitted to the hospital may be seen by some of the autonomic specialists who will order tests and go over them with you. However, if you are going through the actual Autonomic Clinic I went through, it is outpatient.

How long do patients stay at the POTS Clinic?
This will vary case to case. From what I have gathered, the standard is one week (Monday-Friday). Once you are there, the doctors may refer you to specialists outside of the autonomic group or want additional testing. This is what happened in my case. We arrived on a Sunday planning on spending the week at Mayo and leaving Friday. I ended up staying through the weekend and into the following week until Wednesday. The doctors understand not everyone can do this and offered to order my tests in Illinois. I opted to just have them done at Mayo where the experts were.

What expenses should be considered when deciding whether or not to go to Mayo Clinic?

  • the cost of wherever you will be staying
  • transportation (airplane ticket/car rental/gas)
  • food (save money by cooking for yourself)
  • the cost of the clinic itself
  • parking passes if not staying near Mayo (as of now $25.00 for 5 day pass)
  • the cost of money lost from you or family member missing work
  • any special equipment needed for the trip (oxygen rental for airplane, motor wheelchair rental)

How much does the clinic cost?
In addition to the standard POTS Clinic testing and consults, I saw an endocrinologist for my thyroid, a gastroenterologist for my GI issues, had an ultrasound of my thyroid, and had a gastric emptying study. My bill came up to around $20,000. Thank God I had two insurances (BCBS of IL and BAS), one through each of my parents. It was 100% covered. I have heard of people being required to pay co-pays before each appointment, but this wasn’t the case for me due to my double insurance. The price will be different depending on what tests you do (or do not) need done. Most insurance companies will give you an estimation of cost of of services if you request it.

Mayo Clinic does not take Medicaid. They do have a financial assistance program, however it important to know it is a once in a lifetime program. If you use it now and in 20 years you get cancer and want to come to Mayo, you’re out of luck as far as getting help paying for it.

I hear a lot abut the doctors, but how were the staff at Mayo Clinic?
Before I went, I kept hearing, “You will not believe how great everyone is at Mayo Clinic!” I believed them, but I was not expecting them to be as kind as they were.

Everywhere you go, there are volunteers available to help you out. They know the ins and outs of Mayo Clinic itself as well as the city of Rochester. They will happily direct you to where you need to be. They are there as soon as you get out of the car with a wheelchair and help you get in. I thought it was neat how they offer to help even when your family member is right there and could help you. There was never once a time where I was given a strange look for appearing healthy but needing a wheelchair.

The receptionist area staff at each department were also friendly. They all seemed happy to explain anything we didn’t understand and offer guidance. Even if there was a line (which was rare), they never made us feel rushed. If you went up to ask how much longer of a wait they expected it to be, they didn’t look irritated, they just answered and apologized for the wait.

The nurses were my favorite! I felt like they really paid attention to whether I seemed to have energy and want to talk or if I was worn out and just wanted to be left alone. They were all friendly and made the whole experience comfortable, even if they were taping electrodes to my breasts. 🙂 When tests were difficult for me, such as the Tilt Table Test or Exercise Test, they were encouraging and sympathetic. It was everything you’d want in a nurse and never once did I feel like they thought I was crazy or making up symptoms.

I know us patients are staff, but other patients were pretty friendly. I had a few elderly ladies ask what is wrong with me. A bit forward, but I didn’t mind. I noted how in the morning, patients are kind of quiet and tense as they head off to our torture sessions appointments, but in the elevators around 4:30-5:00, everyone was in a great mood! We were all thinking “I’M FREE!!!”

All of those tests and appointments sound exhausting. How did you handle that?
Well, I’ve talked a lot about what a huge help my family was. So, if you have a Mom who will cook and plan for you, a Dad who will drive you everywhere and then walk back to meet you, and a fiance who will give you nightly massage and do anything he can to make you smile and keep your spirits up… you are in business!

Everyone isn’t as lucky as me. One thing that was pretty helpful was renting a motor wheelchair from The Mayo Clinic store. It was only 25.00 a day which is a steal! I rode it from the hotel to the clinic one day, on Jake’s lap. No lie! I also laid down wherever I was. I laid down in waiting rooms, in exam rooms, on outdoor benches.. everywhere! I didn’t use it, but there is a quiet room with reclining chairs and dim lighting. If I hadn’t had the hotel nearby to escape to, this room would have been a life saver! While there is no denying that several of the tests are miserable, it helps that the staff understands they are torturing you. The Tilt Table Test I had done at home was completely different because the nurse doing it didn’t quite understand how terrible it made me feel. I also took comfort in knowing these tests were going to be looked at by some of the best POTS experts in the world, so my suffering was going toward a good cause — understanding my health. Overall, I think my positive attitude is what helped me get through the experience.

Now.. about that family. If you don’t have a Mom to cook for you, you’ll be happy to know on the “subway” level (basement) of Mayo Clinic, there are tons of shops and little places to eat, including a food court. There wasn’t a ton for someone who can’t eat soy, dairy, gluten, or egg, but for people on a “normal” diet, it’d be helpful. There is also a pharmacy. If you don’t have a Mom to plan for you, you’ll be happy to know you are given a detailed schedules and volunteers are happy to help you out. If you don’t have a Dad to drive you, choose a hotel that has a shuttle to and from Mayo Clinic. They’ll take you wherever you need to go and pick you up when you are done. As for keeping your spirits up, that is different for everyone. Call family and friends and update them and get some encouragement. Rent a funny movie or if if you feel well, check out the town. Keeping up my blog really helped me cope with how difficult the whole thing was because everyone back home would leave messages for me. None of this could replace having my Mom, Dad, and Jake there, but it’d help!

Where should I stay?
This depends on what you want, need, and your budget. Almost all hotels in Rochester offer a Mayo Clinic patient discount if you ask. For my trip, it was my parents, me, and my fiance. We needed an apartment type place to stay with a kitchen so we didn’t have to rely on restaurants to eat. Not only does making your own meals save money, it is excellent for people such as myself with strict diets. We stayed at Best Western Soldier’s Field near Mayo Clinic. It came with two bedrooms, a living room, a large dining table (sat 6), and a complete kitchen that included a dishwasher, microwave, full size refrigerator, and stove. There was a shuttle available to transport us back and forth to Mayo Clinic, but my Dad just dropped my Mom and I off at appointment and then would walk to Mayo and meet us. It was about a 15 minute walk. I just checked, and with a Mayo Clinic patient discount, currently a one bedroom (one queen sized bed) suit is a reasonable 110.00 per night while a two bedroom (three queen sized beds) is 196.00. To get the discount, you just show them your Mayo Clinic schedule that you get mailed ahead of time.

If I hadn’t had the ability to have one person drop me off while the other got me to my appointment, it may have been a good idea to consider one of the hotels connected to Mayo Clinic through walkways. Here is information on the walkways from the Rochester visitor’s center website:

Downtown Rochester offers above the street walkways (skyways) as well as underground walkways (subways) for pedestrians to safely and easily maneuver between buildings and businesses. The walkways are heated and cooled to maintain a comfortable temperature year-round. This allows you to stay indoors no matter what the weather is like outside as well as safely cross busy downtown streets. – See more here.
Downtown Rochester offers above the street walkways (skyways) as well as underground walkways (subways) for pedestrians to safely and easily maneuver between buildings and businesses. The walkways are heated and cooled to maintain a comfortable temperature year-round. This allows you to stay indoors no matter what the weather is like outside as well as safely cross busy downtown streets. – See more at: http://www.rochestercvb.org/mayo-clinic-visitors/faq/#sthash.dSQYu60U.dpuf
Downtown Rochester offers above the street walkways (skyways) as well as underground walkways (subways) for pedestrians to safely and easily maneuver between buildings and businesses. The walkways are heated and cooled to maintain a comfortable temperature year-round. This allows you to stay indoors no matter what the weather is like outside as well as safely cross busy downtown streets. – See more at: http://www.rochestercvb.org/mayo-clinic-visitors/faq/#sthash.dSQYu60U.dpuf
Downtown Rochester offers above the street walkways (skyways) as well as underground walkways (subways) for pedestrians to safely and easily maneuver between buildings and businesses. The walkways are heated and cooled to maintain a comfortable temperature year-round. This allows you to stay indoors no matter what the weather is like outside as well as safely cross busy downtown streets. – See more at: http://www.rochestercvb.org/mayo-clinic-visitors/faq/#sthash.dSQYu60U.dpuf

If you do a search for “Rochester Minnesota hotels connected by subway/skyway” you will find connected hotels.

If you will be at Mayo Clinic for two weeks or more, look into short term housing options. The Serenity Housing Network has homes/townhouses/apartments, some with three bedrooms, for rent for less than 100 dollars a night. Here is a whole page of short term housing options.

If you had a time machine, would you go again? Is there anything you would do differently?
I would definitely go again. While Mayo Clinic didn’t “cure” me, they helped me quite a bit. Thanks to them, I know for sure my nerves are not damaged and my POTS seems to be hyperadrenergic in nature. I knew what medicines to try and in what order. Whenever I have a new symptom, I can call and see if it could be due to POTS. If I want to try a new medication but my doctor isn’t sure, I can call. It is priceless to have an expert available to answer questions.

I would do one thing differently if I could go back. I wouldn’t have let myself be pampered quite so much. At home, I tried to keep up with the house as much as I could. I admittedly failed at this most of the time and required quite a bit of help, but the point is, I had chores. My Mom cooked for me on a weekly basis, and more if I’d let her, but I also cooked for myself. On good days, I’d also cook for Jake. Every other weekend, I had a two year old around. When I was able to drive or go to a store, I walked down two sets of stairs to get to my car and, if I drove myself, walked from my car to the door at stores.

At Mayo Clinic, my Mom cooked for me the whole entire time. My Dad dropped me off at every single appointment at the door and Jake or a volunteer would grab a wheelchair. My Mom knew the schedule and would let me know where I needed to be and when. I didn’t have to figure anything out myself. I rested quite a bit. Overall, it was much more relaxing (other than the torture I was subjected to) and much less stressful than being at home. I think I should have walked a bit more and done other stuff to anger my body in order to have the tests shower much as possible. If the current-me went back and told the Mayo-Clinic-me this, I’m guessing the Mayo-Clinic-me would stab the current-me in the eyeballs. I remember how horrible I felt and how, at most appointments, I laid flat in the waiting rooms as well as in the examination rooms. Who knows if I could have even made it through the two weeks if I hadn’t been pampered? Still, I wish Mayo Clinic had seen me at my absolute worst.

I will leave you with a page devoted to Mayo Clinic patients visiting Rochester and this excellent patient guide to Mayo Clinic that answers almost any general question you could have. If you have any questions, please don’t hesitate to either leave a comment or use the contact form to get in touch with me!

21 thoughts on “Mayo Clinic’s Autonomic Clinic — A Guide

Add yours

  1. This is such a thorough post Jackie. Mayo sounds like an amazing place. I wish there was something similar in the UK but I don’t think there is. Hope you’re having a good day. I had a bad morning, feet went very purple in the shower, heart rate went from 74 to109, and then feet went even more of an odd colour once I was sat down afterwards. I look forward to reading your posts about your clinic visit for biofeedback, can’t be long til you go now?

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  2. Oh boy do I love Mayo. I can’t relate on the POTS side of things but I definitely can on the people at Mayo. Every single person I’ve encountered there has been fantastic. I’m actually looking forward to returning next month! The only thing..I wish the hotels connected by the walkways were a little more reasonable with their “Mayo Clinic Rate.” It is quite pricey, but so worth it in the cold Minnesota winter. We’ll be staying at the Country Inn and Suites South. Luckily, since my mom travels so much for work she has tons of rewards points through them. We’re only staying one night this time. This will also be the second time we’ve stayed for free. They also have a shuttle but it picks you up like an hour and a half before you really need to leave. Thankfully, she doesn’t mind getting up and driving me:)

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    1. Thanks for adding this. I’m sure it’ll be helpful to people! I agree it’d be nice if the connected hotels were affordable since most people sick enough to be at Mayo for prolonged periods of time are on a budget.

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  3. Wow! An autonomic neurologist!
    I too wish there was something even remotely similar in the UK.
    There is a Mayo in London but it’s definitely for the very rich and mostly famous.- and well enough to get there.

    I think the “while the Mayo didn’t cure me” bit is very important. I think we’ve been sold false advertising over medicine and when we aren’t sick we believe that should we get sick medicine will cure us. It’s simply not true. We have have to accept there are chronic diseases and they remain chronic. I sometimes think it’s the medics who have more of a problem with this than us chronics.

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  4. My 14 yr old diagnosed with pots at Mayo in Sept 2014 had been sick for 22 months. They did good in telling us that much and requested a MIR be done of her head when we came home . Finally in Nov 2014 a lesion was found in the optic chasim near the brain stalk. She has surgery next week to remove this lesion or tumor so let’s see if it makes a difference in the so called POTS. She has only worsened and this is not going away. There is a reason for autonomic dysfunction people find it. Be persistent. Not all teens have POTS that will just go away. My daughter as we found out has more wrong with her than just POTS!!!

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    1. POTS is definitely a symptom. Something causes the autonomic nervous system to malfunction. I think most people want to find out why, but struggle when specialists don’t give the patient any direction. I’ve been to the top EDS expert and Mayo, none had suggestions on how to identify my underlying cause. They all missed a common autoimmune disease. I had to read, read, read and identify the direction I would go myself.

      I hope your daughter’s surgery goes well! I’ll be thinking of your family.

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  5. My daughter was diagnosed at the Mayo Clinic in florida and referred to the clinic in rochester. She has already had all of the testing and has been bedridden now for 3 years. We are trying to make the decision to take her there or not. Last thing we want is more testing. We want treatment. Do they do treatment I am stil unclear as to what they do for treatment. Thanks!

    Liked by 1 person

    1. Response to Mayo Jackson –> Rochester

      Do you know the reason they want her to be seen in Rochester? If she already had autonomic testing (QSART, tilt table), I wonder if perhaps they are sending her because they think there’s a particular doctor there who may be able to help her more or do a specific workup.

      My experience was 5 years ago and was through the the week long autonomic clinic. They did testing, I consulted with several specialists, the specialists recommended treatments (as well as what to try if those treatments didn’t work), they each wrote a report, and it was all sent to my local doctors to carry out. That’s just my own experience though, and you said she already had autonomic testing at Jacksonville. Assuming this happened recently, I would be surprised if they are doing complete autonomic testing again.

      If I were you, I’d do two things:

      1) Get clarity on why you are being referred there. Is it for testing, a specific doctor, or both, and could they help you understand how come it needs done at Mayo Rochester rather than Jacksonville? Call the department the referring doctor is in and ask to leave a message. I have the best success with this sort of thing when I am friendly/collaborative each and every time I call, even if I’m feeling frustrated. Ask when you should expect a call back by. Write down the name of who you talk to, the date, and the time. That is all helpful to have in case you don’t hear back in the timeframe given and need to call back.

      2) If you don’t have them, request her records, including doctor notes in order to fully understand where the doctor(s) is coming from. The last time I needed records, I noticed Mayo makes this easy to do through their patient portal.

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      1. I have her records. She spent a week at mayo jacksonville and did all of the sweat test, tilt table test and inner ear testing. Was diagnosed with POTS and they suggested she go to the POTS clinic in Rochester for treatment. That is all the paperwork said is ROchester POTS clinic for treatment. But if all they will do is the same testing again that is useless. I assumed it was for specialized treatment of the disorder.
        All of her records and doctor notes are on the patient portal too so I can read through them there and the referral. We have suggestions on medications to try with her family physician but have tried all of them to no avail. Nothing has helped.
        Thank you for your reply

        Liked by 1 person

        1. I went through the same thing with trying treatment after treatment without much result. It’s wonderful she has you to advocate for her.

          So am I understanding this right – the paperwork states they are referring her to Mayo Rochester for treatment, but nothing further? No department, specialty, or particular doctor is listed, and the condition she is being referred for is POTS?

          What were the results of the QSART?

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          1. We are headed to an appointment right now but when I get back I will look at the exact name and let you know.
            Her case, i guess all are complicated, but hers is complicated too because she has lyme disease.
            I will let you know what the referral says. It stated outpatient treatment at the POTS clinic for 3 weeks. We stopped there wondering how we’d pay for a hotel for 3 weeks! But it has been three years and things are getting much worse so we have to do something more than a family physician troubleshooting meds that she has a bad reaction to every time anyway.

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