Mayo (Rochester) - General Descr Of My Condition

[Detrick7]

Long story short my cardiologist and/or neurologist are going to refer me to Mayo in Rochester. I have had a ttt, sleep study, sleep deprived EEG, 24 hour EEG, ECHO (twice), MRI, hearing test, and ultrasound(?) of artery in my neck. The only "promising" test really was the 24 hour EEG. It showed abnormal brain activity when I recorded epsiodes. Two neurologists looked at it and to the best of their knowledge showed a drop in blood pressure, but NO change in heart rate.

My episodes include getting light headed, weak in the knees, seeing black, sometimes jerking/tremors and sometimes falling upon standing (not all the time, but sometimes). I have smaller episodes sometimes just from turning head quickly, or turning around. Even sitting down just looking down and up will cause a small episode. Almost all of my episodes begin with a big yawn. Sometimes I drop things without realizing it happened until whatever I was holding hits the floor. Sometimes I feel like I completely black out, but just for a few seconds, and don't fall. I work fulltime, but feel like this really affects my work sometimes. Takes me much longer to do tasks I should be able to do quickly. I have a desk job and working at my desk the constant yawning, hand twitches, seeing black, and "brain fog" make me need to recollect my thoughts many times each day.

My cardiologist, neurologist, and regular doctor are great and all take me seriously and agree I should go to Mayo. I am currently on Midodrine (10 mg 3X a day) and Zoloft (50mg 1X a day). They seem to help, best way to describe is they don't prevent episodes but seem to make them not as bad.

I am male 32 years old, 5' 10", 150 lbs otherwise in good health. I am married with a 2 year old and another on the way. I am pretty much a normal functioning adult besides my dysautonomia (diagnosed with NCS, not sure if that is entirely correct since I don't have a change in heart rate during episodes). I get through most days ok, but days without multiple episodes I feel like I am draggig all day and just unloading the dishwasher (up and down), picking up, and playing with my son seem like much more of a challenge than they should be.

I drink plenty of water everyday (80-100 ounces)and try to get more salt in my diet. I completely cut caffefine out of my diet and otherwise eat a pretty normal well rounded diet.

Basically my questions are what to expect at Mayo? What kind of tests will they do? How long will I be there? How much does it costs (I have good insurance, even saying that I am sure this is difficult to calculate)? Will the doctors doing anything different than has already been tested?

Any comments on Mayo or general comments would be appreciated.

Thanks for reading,

Lance

[issie]

Plan to use up all of your out of pocket. It is expensive to go to Mayo - but, in my case a good experience - except for one doctor. They like to run their own test - so they may re-do allot of what you've already done. But, do take all your reports in, they scan them into their computer system and can refer to them easily. All the doctors will have access to whatever you bring in. Take your x-rays and anything relevant. Plan to stay for more than one week, they don't work on the weekends. You can go on stand-by if you have free time and can possibly speed up your visit that way. You can always go back to scheduling and have them try to crunch up your appointments. Tell them that you are on a time limit and they will try to get it all scheduled for you as close as possible. I went to the one in Phoenix, so that's the one I know of. Hope they get it figured out for you and that you will get some relief soon.

Issie

[potsgirl]

Hi Lance~

I've been diagnosed at Mayo Clinic (Scottsdale and Rochester) twice - once for heart problems back in 2006, when I was in congestive heart failure with cardiomyopathy (got a pacemaker for bradycardia, too), and then for dysautonomia at the Rochester clinic about a year and a half ago. A little reassurance - they've been great each time I've dealt with either clinic. You get your tests and results very quickly, and other doctors can see them almost immediately on the clinic-wide computer system.

When I went to Rochester, we stayed for 10 days because we had to stay over a week-end. As they start off with testing (sweat tests, possibly tilt table, nerve conduction - it depends on your particular symptoms), depending on the results, it may lead to you having more tests or being referred to another doctor in another specialty. You never know until you get there how long the testing might go on, and at the end of the testing, you'll have another consult with your main doctor. I'm guessing when you get your itinerary that you'll already be scheduled for a consult and some tests.

I'm not sure when you're going, but it might be darn cold up in Rochester when you go. There are a couple of hotels that connect directly via underground tunnels to the main clinic where most of your tests should be. That's where we stayed. Roll out of bed, get ready, and walk over there...it's very easy. Of course there are hotels all over the city, but then you have to drive in and park. The Kahler Hotel and their version of a 'express hotel' connect to the clinic, as does the Marriott Suites (?). We ended up staying there, and it was great. A little pricey, but it's cheaper the longer you stay. We saved on food by buying from a local grocery store and storing the food in the suite's fridge and pantry. There's also a microwave and coffee brewer.

The Mayo Clinic cafeteria is pretty good, and they have a great coffee/tea cart in the same area. There's a small shopping center underground, too, with restaurants and a drug store, etc. that you reach via the tunnels.

Hope this helps somewhat. If you have a specific question, feel free to PM (personal message) me. The Mayo site is also pretty informative.

Cheers,

Jana

[Detrick7]

Thanks for the replys. I am not sure when I am going yet. My regular doctor called me Friday, she had talked to my cardiologist and neurologist that day. She said my cardiologist was going to refer me and not sure how long it would take. I have heard a wide range of wait times so not sure what to expect when I will go. Does anyone have any idea? I have good insurance and live in Iowa so not a long trip for me so I would go whenever they could get me in.

[Guest tearose]

Mayo will say one week and it may take two! You may need additional time past that as well.

The Mayo experience will be like no other you ever had in your life!

You will be assigned one main doctor and be sent to other departments as may be needed. They will get a complete and full picture of what is going on in your body and will do all they can to get accurate diagnosis and treatment plan. You must be patient, offer all the information you can, ask questions, wait for answers AND request to have ALL you files copied and ready for you when you leave. You may need to wait for these as well. Otherwise you will wait three weeks for them to get to your home PCP.

Do call your insurance company and write down every thing they say. Remember, if you can, get things in writing because what you are told on the phone is not always accurate. I have learned that the hard way.

As for your stay, do try to find a place close to the clinic buildings because you will have many appointments in many buildings and will become tired from all the shuttling around. Mayo is a complex of many buildings connected by overpasses and tunnels.

To keep expenses low, I made sure I had a little fridge in my room and I had a coffemaker too. I ate cereal in my room for breakfast, brought a sandwich or ate lunch in a Mayo cafeteria, and for dinner would do different things.

It was an expense I barely could afford...but the value was/is priceless. I got my life back when I finally got a diagnosis from Mayo!!!

I still struggle with physical challenges of POTS (and Lymphedema) but my quality of life is better. I have been to Mayo three times now and in all those times only once did I have a dud doctor.

The clinic is one of a kind, the professionalism and exceptional quality of techniques, tools and people make it a journey worth making.

I am living with acceptance and a good management plan and am thankful for every day. I am hoping you will find your stay there as valuable.

best regards,

tearose

[houswoea]

Hey now, it's a balmy 60 degrees Fahrenheit up here in Minnesota! We're breakin out the short sleeves!

[ken870]

Detrick plan on waiting a long time for an appointment because i have been waiting ever since feburary and i called them thursday and they told me i would probably have to wait until feburary of next year to get an appointment.

[houswoea]

Ken,I don't understand why you have to wait that long. I got an appointment in four months. What's the deal??? I don't think something is working right somewhere along the line...

[ken870]

Ken,I don't understand why you have to wait that long. I got an appointment in four months. What's the deal??? I don't think something is working right somewhere along the line...

they tell me they want me to see a specialist in pots and so far all of the specialist have been booked up and this is why i have been having to wait also they tell me they have had other people wait this long it is not just me.