What Do They Do At Mayo Clinic?

[puppylove]

Both of my doctors don't really know what else to try right now, and suggested I go to Mayo. Both locations are pretty far away so it would be a big ordeal since I have three other siblings, and obviously one of parents would have to take me there. I was wondering how beneficial it has been for people who have gone, and what they do? Also, I think they said I would be there for a week if I went, how long did you stay?

[jpjd59]

Puppylove:

We ended up taking my daughter to the Mayo Clinic in Arizona. We found the trip useful as far as all of the autonomic tests that they can run which other places may not have. We were there for a week (arrived on Sunday and left late on Friday). The only bad part was that once we were back home any follow up care was hard because the Mayo was so far away.

[azmusiclover]

I have been to both Rochester and Arizona. I went to Rochester in 1999 and we stayed a week. This was in the early days of testing. I had some lab studies, the tilt table (which was deemed experimental at the time so we had to pay out of pocket!) an EEG and then I saw the doc again before we went home. It was worth it because I knew what was going on. I spent 2 years in a rough patch then got better. Symptoms flared up again starting last year, so since I am in Arizona now and my insurance covers Mayo, my husband said, go ahead. It's taking longer since I am local, they space it out, but at least it's summer here so I will get all squared away before the snowbirds arrive.

I think it's awesome. I love the way they coordinate everything and the Mayo machine is amazing. If you are able to do it, I recommend either Mayo. The waits will be longer in the winter in AZ. Mayo Rochester is neat too because they have all the buildings connected with underground hallways and shops and food.

Good luck with your decision.

[seaboardbc]

I had many awful experiences at Mayo. I don't know where you live, but I would recommend seeing Dr. Grubb in Toledo, Ohio. He has written several papers from his research on POTS. He is absolutely amazing! It may be quicker to get an appointment with his assistant Beverly Karabin, RN, PhD, CNP Nurse Practitioner. She is wonderful too! If you see Bev and she thinks that you need to see Dr. Grubb also, she will get you in sooner than just trying to get in with him yourself. Here is the link to their department http://utmc.utoledo.edu/clinics/hvc/Syncope_Center.html

Dr. Grubb diagnosed me a 10 yrs ago and he always comes up with the new ideas to help me get back (or stay on) track. Both Dr. Grubb and Bev are very knowledgable, compassionate, and understanding.

If you decide to go to Toledo, I can help you if you have travel questions. I grew up in Ohio and I am very familiar with the area.

[NMPotsie]

I go to Mayo Scottsdale and have found it very helpful. You get so much done so quickly and they are proactive in trying to figure out what is wrong with you. Many of the people I have talked to have associated issues that need to be addressed by other types of doctors than neuros and cardios (ie GI, immunology, etc.) and you can get a lot of that in while you are there. The big reason I like it is because the people are so kind and so caring. That is a rare commodity in the medical field, at least where I live. I fainted at the desk after a blood draw and they were so sweet to me. I said "I'm here because I can't stand in line, and you're making me stand in line" and they were like "well you should have told us you can't stand in line!" I never had to stand in line the rest of the time I was there.

I was there for a week and underwent testing pretty much all day from 6 am to 5 or 6 pm. I had numerous blood and urine labs, the full neuro exams for dysautonomia (ttt, qsart, valsalva, plasma cats, etc.), and lots of cardio. There were complications with the plasma cat test because absolutely no blood would come out of my arm. They tried everything, and finally had to cheat the test with a bp cuff after getting permission from the doctor. All of my schedule was thrown out of wack because it took 2.5 hours, but when I walked out they gave me a new schedule with everything rescheduled so I wasn't prevented from getting the tests I needed.

Some people have said they think it's expensive, as well, but compared to what I was paying locally it was actually much cheaper. My MRI was like $3k, and here it was $5500, so overall the bill hurt a lot less. I spent less at Mayo for useful answers than what I had spent locally for a handful of xanax prescriptions.

I was given an extensive consult with the neuro and cardiologist, med recommendations/prescriptions, an exercise program, and suggested lifestyle changes. I was, most importantly, given a pretty clear explanation of what was going on, why it was happening, and what I could expect my prognosis to be. It was a bit painful at that point, but the doctor was honest and still kind.

I'm going back for my 6 month followup in September, and told the appointment lady I was having trouble getting the recommended allergy panel here for my random hives/anaphylaxis, so she booked me there. How easy is that? The funny thing is, she had to put me in for "red, itchy eyes" because everything else required dermatology first (I've already seen multiple derms, to no avail). The point is, they figure it out.

Also, everything with Mayo is online so you have access to all your records and can print all your results as needed. That is great when you see a lot of doctors, and saves all the copying expenses/trouble. Also, I've found that tests from there carry a lot more weight with local doctors, generally (not all), than other tests. It is hard to find followup care, but I think that's true of anyone who lives in an area without a good doctor and who has to travel to find one. Also, Dr. Goodman's nurse is fantastic about answering any and all phone calls, even if they're like "my thumb is at a 90 degree angle; can this be a pots thing?"

Good luck with your decision.

[juliemc77]

Puppylove, thanks for asking the question. I am also considering Mayo. I know that the one in Rochester has the Autonomic Neurology Subspecialty Group so it would make sense to go that route, however, the travel expenses would be more for me. My parents live relatively close to the one in Arizona, so I'd be able to save some $$ by staying with them, but I don't know much about the doctors there. I've seen a few people mention Dr. Goodman, but I don't see POTS or dysautonomia listed as one of his specialties, but from the sounds of it, people on this forum seem to go to him.

I'd love to hear more stories about Mayo and other facilities/doctors so I can make an informed decision. Thank you to those who have posted so far.

[Kor1212]

Nice post NMPotsie! I was just diagnosed with dysautonomia in June at a big teaching University, they don't know why I have it ( I have no med history or risk factors) yet they told me to never expect to be better. They put me on Flurinef, Midodrine, salt and fluids and said come back in3 months! In the mean time I am seeking a 2nd opinion. It seems reasonable to me to do further testing ( I had TTT, QSART, tons of cardiac, Pulmunary, labs, etc) to find the mechanism of my dysautonomia. Do I have dopamine, NE, catecolemine, hormone, autoimmune antibody issues, etc? So I emailed doc at Mayo directly and had my local Neuro call him.....I got an apt within 6 weeks. The doc actually emailed me back from Mayo, and i'm not even his pt yet! This is coming up at the end of August and I can let you know how it goes. As far as the expense, I am flying from OR and staying a week for 1100 $. I have already met my deductible for BCBS, so whats a few more thousand? And who can put a cost on your health?

I believe everything happens for a reason, so I need to here from a professional, who is well versed in this disorder, why they think this is happening to my body and what I can do to minimize my symptoms and give myself the best chance to recover. I do not accept the Docs opinion of wait and see, and you won't get better when she doesn't treat this type of disorder on a daily basis. The challenge is finding the right doc for your disorder, POTS happens for so many different reasons.

You have to be your own, biggest advocate:))

[flyingsquirrel]

I was seen in Rochester earlier this year. I live nearby so my appointments were spread out to fit around my work schedule. I have nothing but good things to say about autonomic neurology (I saw Sandroni), sleep medicine (Altchuler), and everyone who did the testing. Cardiology, which is where I spent most of my time, I don't have good things to say about.

Mayo seems to be good at POTS. But I don't have POTS...I have a different autonomic problem (which had already been diagnosed but wasn't being effectively treated). My autonomic neurologist picked up on it right away, but because it was confined to my heart, she sent me back to cardiology. Cardiology basicially stopped taking me seriously as soon as they (re)discovered I didn't have POTS.

[puppylove]

Thanks for all your opinions. I will let you know what we choose.

[Christy_D]

We had my son's initial testing done at Case Western University Hospital in Cleveland and two years later we were at the Mayo Clinic in MN. Between the two, Case Western U. Hospital was much more thorough in the testing. The TTT in Cleveland was 40 minutes and computeriezed minute by minute, at the Mayo it was 10 minutes and done manually only checking bp/hr at rest, start and every five minutes. At the Mayo, we were in the pediatric department where as at Case Western they did all the autonomic testing at the same place. The Chelimsky's are no longer at Case Western so I don't know if everything is still run the same way. Overall, I was not impressed with the testing my son had done at the Mayo and very impressed by Case Western. That's my two cents.

[Millerla]

I was there foter a week, more for a comprehensive testing before giving me a solid diagnosis though. Although, with all of the things associated with POTS, I'm sure they could test us forever. Its possible that you would be done earlier than a week, but not likely.

When I went, I felt like some doctors understood me, and others didn't. The GI guy was pretty weird and not terribly helpful, but managed to pinpoint my lactose intolerance without any tests. The autonomic specialists definitely got me the best. I probably dislikme the exercise test people, but apparently they're used to that XD. My favorite was the TTT person. I was only tilted up for 10 minutes, like the other person said, but I was begging to be let down by then. They did all sorts of breathing things while I was laying down though. Other things I had included a pulmonary test, sweat test(back to my old days of cystic fibrosis testing...), exercise stress test, GI visit, Gyno visit, psychologist visit, x-rays, EKG, blood tests(and other bodily fluids ), a visit to the psychiatrist at the PRC, and several visits with autonomic specialists/nurses.

Edit: I went to the Rochester location, and stayed at a cheap hotel with a discounted rate from Ronald Mcdonald house. The main specialists were Dr. Kornobel(sp?) And Dr. Kizilbash. I liked Dr. Kornobel better, but she was out of town the end of the week with Dr. Fischer. I spent most of my time in the pediatrics unit. But that's more because of my insurance company.

Of course, assuming you already have a diagnosis, you may have completely different appointments.

In my opinion, it was totally and completely worth it, though stressful and exhausting.

[jangle]

Take what I say with a grain of salt because I did not go, but I called up Dr. Goodman's office to see what they do at Mayo Arizona. Basically said if Florinef or Midodrine didn't work they just recommend salt and exercise.

Well I'm not spending that much money to be told to do what I'm already doing.

[NMPotsie]

That's odd, jangle, because I go to Dr. G and I wasn't given either of those (one was due to my hypertension with flares, but don't know which). We discussed beta blockers (all types), ssris, snris, xanax/lorazapam, and various other treatments. I was also given lots of suggestions for lifestyle/diet modifications (other than salts) and told what testing I should pursue when I went home to try and get my symptoms under better control. Maybe the office is only familiar with those two meds?

[jangle]

That's odd, jangle, because I go to Dr. G and I wasn't given either of those (one was due to my hypertension with flares, but don't know which). We discussed beta blockers (all types), ssris, snris, xanax/lorazapam, and various other treatments. I was also given lots of suggestions for lifestyle/diet modifications (other than salts) and told what testing I should pursue when I went home to try and get my symptoms under better control. Maybe the office is only familiar with those two meds?

Well I substituted "salt and exercise" for what they said on the phone was "lifestyle modifications" I don't know what other lifestyle modifications they might be advocating.

[McBlonde]

Now that you say that, it reminds me of someone here on the board that took their child to Mayo in MN, spent a week and oodles of $$ only to come home with the "salt, fluid & exercise". ( but of course I can remember who or when it was posted)

[mully2014]

I went to Mayo in MN and I had a good experience there and my regular cardiologist still keeps in contact with my doctor there. They didn't have much for me personally to help me but they did reassure us in a lot of our thoughts and treatments. The cardiologist I normally see always goes above and beyond and Mayo said they couldn't believe everything we had already done.